Generated by All in One SEO Pro v5.0.1.1, this is an llms-full.txt file, used by LLMs to index the site. # MitoAction Support, Education, Outreach and Advocacy for Children and Adults Living with Mitochondrial Disease ## Posts ### [News](https://www.mitoaction.org/news/) **Published:** August 20, 2018 **Author:** mitoaction --- ### [Mighty Therapeutics to Develop MYTX-255 for Fatty Acid Oxidation Disorders.](https://www.mitoaction.org/enabling-studies-of-mytx-255-a-mitochondrial-targeted-therapeutic-candidate/) **Published:** September 10, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![Mighty Therapeutics Logo (PRNewsFoto/Mighty Therapeutics)](https://mmx.prnewswire.com/media/MS886719/Mighty-Therapeutics-Logo.jpg?id=OA2936860 "Mighty Therapeutics Logo (PRNewsFoto/Mighty Therapeutics)") **September 9, 2026** *New data presented in long-chain fatty acid oxidation disorders at INFORM 2026 support development of Company’s third mitochondrial-targeted candidate* NEEDHAM, Mass., Sept. 9, 2026 /PRNewswire/ — [Mighty Therapeutics](https://edge.prnewswire.com/c/link/?t=0&l=en&o=4769686-1&h=437614899&u=https%3A%2F%2Fmightytx.com%2F&a=Mighty+Therapeutics) (the “Company” or “Mighty”), a commercial-stage biotechnology company pioneering development of a new class of medicines that directly target mitochondrial dysfunction in rare and age-related diseases, today announced the initiation of IND-enabling studies of MYTX-255, a novel investigational mitochondrial-targeted therapeutic candidate. The Company plans to submit an Investigational New Drug (IND) application for MYTX-255 by year-end 2027. “We are thrilled to advance our third mitochondria-targeted therapeutic toward the clinic, furthering our pioneering work in mitochondrial medicine across a range of serious diseases,” said David A. Brown, PhD, Chief Scientific Officer at Mighty Therapeutics. “Based on the compelling data we recently presented at the INFORM Annual Meeting, we intend to develop MYTX-255 for fatty acid oxidation disorders, which are life-threatening genetic conditions that leave patients unable to generate the energy they need from fats, often leading to severe metabolic crises, muscle breakdown, and organ damage. We believe MYTX-255 has the potential to improve energy production, metabolic resilience, and mitochondrial function across multiple fatty acid oxidation disorders.” Mighty presented a study demonstrating beneficial effects of MYTX-255 in cells derived from patients with long-chain fatty acid oxidation disorders (LC-FAODs) at the [INFORM Annual Meeting](https://edge.prnewswire.com/c/link/?t=0&l=en&o=4769686-1&h=3877845608&u=https%3A%2F%2Finformnetwork.org%2Fannual-meeting%2F&a=INFORM+Annual+Meeting), held August 23-24, 2026, in Helsinki, Finland. In the study, fibroblasts from people with four genetically distinct LC-FAODs showed impaired mitochondrial function. Treatment with MYTX-255 significantly improved mitochondrial energy-producing capacity across all four types of LC-FAODs, as measured by two independent tests of mitochondrial function. These findings support further investigation of MYTX-255 as a potential therapeutic approach for multiple forms of LC-FAODs. MYTX-255 has also demonstrated potential in several different models of cardiac and muscle myopathy including hypertrophic cardiomyopathy, idiopathic cardiomyopathy, and aging cardiac and skeletal muscle. Mighty is advancing a robust clinical and preclinical pipeline across a range of diseases, including ocular diseases such as dry age-related macular degeneration; neurodegenerative diseases such as Parkinson’s disease, Leigh syndrome, and Friedreich’s ataxia; diseases of aging; and rare diseases associated with mitochondrial dysfunction such as POLG disease and Barth syndrome. **About Mighty Therapeutics** Mighty Therapeutics, together with its wholly owned operating subsidiary, Stealth BioTherapeutics Inc., is advancing novel therapies for people living with diseases involving mitochondrial dysfunction. Grounded in rigorous science and inspired by meaningful patient partnerships, the company is building a proprietary pipeline to directly address bioenergetic deficits at the source. In September 2025, Mighty marked a historic milestone with the U.S. Food and Drug Administration (FDA) approval of its first commercial therapy, establishing both the first FDA-approved treatment for Barth syndrome and the first FDA-approved therapy to directly target mitochondria. Today, Mighty’s development portfolio encompasses rare and age-related diseases. Mighty continues to develop elamipretide in Barth syndrome and polymerase gamma related mitochondrial disease. Mighty’s Phase 3 ReNEW clinical trial of elamipretide in dry age-related macular degeneration is fully enrolled, with data expected late 2027, and Mighty is progressing its next-generation clinical candidate, bevemipretide, into a Phase 2/3 clinical trial in dry age-related macular degeneration by year-end. Mighty is also developing systemic bevemipretide for Parkinson’s disease and continues to develop preclinical assets MYTX-255 and MYTX-589 for rare mitochondrial disorders. For more information, visit [www.mightytx.com](https://edge.prnewswire.com/c/link/?t=0&l=en&o=4769686-1&h=1595578804&u=http%3A%2F%2Fwww.mightytx.com%2F&a=www.mightytx.com). **Media Contact** Ascent Strategic Communications **Investor Contact** Precision AQ Austin Murtagh **Patient Advocacy** ![Cision](https://edge.prnewswire.com/c/img/favicon.png?sn=NE43127&sd=2026-09-09)View original content to download multimedia: **Categories:** MitoAction in the News, Mitochondrial Disease News, Press Releases **Tags:** BioSpace, Mighty Therapeutics --- ### [First-Ever Mitochondrial Disease Advocacy Coalition Launched,Uniting 17 Groups Behind a Single Voice on Capitol Hill](https://www.mitoaction.org/first-ever-mitochondrial-disease-advocacy-coalition-launcheduniting-17-groups-behind-a-single-voice-on-capitol-hill/) **Published:** September 3, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/09/UMDF-Color-logo-for-social-or-webpng-Logo-01-14-2025.png) **September 3, 2026** New coalition brings together organizations from across the mitochondrial disease community to accelerate research funding, advance patient-centered legislation, and foster a responsive regulatory environment for new therapies. (PITTSBURGH, PA) Seventeen mitochondrial disease-focused organizations in the United States today announced the launch of the Mitochondrial Disease Advocacy Coalition, a unified body formed to speak with one voice on Capitol Hill on behalf of the estimated 80,000 people living with mitochondrial disease in the U.S. Mitochondrial disease occurs when the mitochondria in a patient’s cells fail to convert food and oxygen into the energy the body needs to survive – a failure that can affect any organ system and rob a patient of the ability to see, hear, walk, talk, eat, and breathe. Many forms are devastatingly progressive, meaning some affected children do not survive beyond their teenage years. Adult-onset disease can bring rapid physical decline. Less than one percent of the 300-plus known genetic variants of mitochondrial disease currently have an FDA-approved treatment. There are no cures. The announcement comes as the community prepares to mark World Mitochondrial Disease Week Sept. 14 – Sept. 20, a time that unites patients, families, researchers, clinicians, and advocates worldwide to raise awareness and mobilize support for mitochondrial disease patients. The coalition, which is being convened by the United Mitochondrial Disease Foundation (UMDF), includes the following organizations: ADOA Association ATAD3A Patient Advocacy Alliance Barth Syndrome Foundation Cure LBSL Cure Mito Foundation CureARS Friedreich’s Ataxia Research Alliance (FARA) Heart of PPA2 Hope for PDCD Foundation Jeremiah Gracen TK2d Foundation LHON Collective MitoAction MitoWorld RareDNA Foundation The Champ Foundation The Elizabeth Watt PDCD Research Fund UMDF “Our community has never lacked passionate advocates. It was simply that the advocacy was directed in a lot of different directions, spread across hundreds of diseases,” said Kristen Clifford, President & CEO of the United Mitochondrial Disease Foundation. “Individually, each organization has fought hard for this community, but no single organization can carry that weight, or command the kind of attention we need on Capitol Hill, alone. This coalition harnesses our collective passion into a single, united voice.” The group will focus its efforts on three federal priorities: securing and expanding federal research funding for mitochondrial disease; advancing legislative priorities that directly affect mitochondrial disease families; and fostering a regulatory environment that meets the needs and urgency of the community. The public is encouraged to visit mitoadvocacy.org to learn more about the coalition’s priorities, member organizations, and take action on a number of advocacy items. **Categories:** MitoAction in the News, Mitochondrial Disease News, Press Releases **Tags:** advocacy, coalition, research, United Mitochondrial Disease Foundation --- ### [Pretzel Therapeutics Advances PX578 into Phase 2 Study in Individuals Living with POLG-mediated Primary Mitochondrial Disease Following FDA Clearance of IND](https://www.mitoaction.org/pretzel-therapeutics-advances-px578-into-phase-2-study-in-individuals-living-with-polg-mediated-primary-mitochondrial-disease-following-fda-clearance-of-ind/) **Published:** August 25, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Image-8-25-26-at-933-AM.jpeg) **August 25, 2026** PX578, a potentially disease-modifying, first-in-class investigational medicine cleared to start clinical trials in patients Initiation of Phase 2 Trial in POLG-PMD (POLG Disease) Planned for late 2026 Successful completion of Phase 1 study in healthy volunteers **WALTHAM, Mass. – Tuesday, August 25, 2026** – Pretzel Therapeutics, Inc., a clinical-stage biotechnology company advancing a new class of medicines designed to restore mitochondrial function, improve cellular energetics and impede disease progression across a range of neurological and rare diseases, today announced that the U.S. Food and Drug Administration (FDA) has cleared its Investigational New Drug (IND) application to initiate a first-in-patient clinical trial of PX578, the Company’s lead therapeutic candidate. The Phase 2 study, POLARIS (POLg Activation and Recovery In Subjects), will evaluate PX578 in adult patients with POLG-mediated primary mitochondrial disease (POLG disease), a rare, progressive genetic disorder caused by mutations in the POLG gene causing a depletion of mitochondrial DNA. This mitochondrial DNA depletion syndrome results in mitochondrial dysfunction and a range of debilitating neurological and systemic manifestations. There are currently no approved disease-modifying treatments for this condition. POLARIS will build on recent success with a Phase 1 healthy volunteer study with PX578 conducted in New Zealand. “FDA clearance of our IND application for PX578 is a significant milestone for our company and, more importantly, for individuals living with POLG disease,” said Jay Parrish, Ph.D., Chairman and Chief Executive Officer of Pretzel Therapeutics. “POLG disease is a devastating, progressive condition with no approved disease-modifying treatments. The clearance of our IND application reflects the strength of the scientific and clinical foundation supporting PX578 and brings us one step closer to advancing a potential therapy designed to address the underlying mitochondrial dysfunction that drives disease progression.” “The successful completion of our Phase 1 study in healthy volunteers which met all of its objectives, together with compelling preclinical data demonstrating the ability to increase mitochondrial DNA levels and improve function, gives us confidence that PX578 has the potential to address the fundamental driver of disease,” said Ashish Dugar, Chief Development Officer of Pretzel Therapeutics. “We have worked closely with regulators, the patient community and key opinion leaders to thoughtfully design POLARIS. We are eager to begin evaluating PX578 in patients with POLG disease, where there remains a profound unmet need for therapies that can meaningfully alter the course of disease.” POLARIS is a randomized, double-blind, placebo-controlled trial designed to evaluate safety, tolerability, pharmacokinetics, pharmacodynamics and clinical efficacy of PX578 in adults with POLG disease. Given the central role of impaired mitochondrial DNA replication in POLG disease, PX578’s ability to enhance POLγ processivity during mtDNA synthesis provides a strong mechanistic rationale for its evaluation in this patient population. “Today, there are no approved disease-modifying treatments that address the underlying biology of POLG disease, leaving patients and their families with limited options as the disease progresses. The opportunity to evaluate a therapy designed to potentially modify the course of disease – not simply manage its symptoms – offers a meaningful reason for hope. We look forward to seeing this program advance into the clinic and to the insights that clinical research may bring to the POLG community,” said Kristen Clifford, United Mitochondrial Disease Foundation, President and Chief Executive Officer. The advancement of PX578 into Phase 2 represents an important opportunity to test a therapeutic approach specifically designed to address the mitochondrial DNA depletion that lies at the heart of POLG disease. Supported by encouraging preclinical findings and successful completion of a Phase 1 study, PX578 is being developed on a strong scientific foundation that directly targets disease biology. While much work remains, the initiation of POLARIS marks a meaningful step forward and offers renewed hope for patients, families and clinicians seeking treatments capable of changing the course of this devastating disease. **About POLG-mediated Primary Mitochondrial Disease** POLG-mediated primary mitochondrial disease (POLG disease) is a progressive, multisystem disorder caused by impaired cellular energy production due to mitochondrial DNA (mtDNA) depletion. It represents one of the most common forms of mitochondrial DNA depletion syndromes (MDDS) yet remains considerably underdiagnosed or misdiagnosed. The disease affects individuals across all ages, with presentation and prognosis largely determined by age of onset: childhood-onset (prior to age 12) is severe and rapidly progressive, characterized by liver involvement, seizures, and cognitive regression; juvenile and adult-onset (ages 12-40) often presents with ataxia, peripheral neuropathy, and seizures; and late-onset (ages 40+) is typically more slowly progressive, characterized by ophthalmoplegia, ptosis, and myopathy. Across all forms, POLG disease is highly debilitating and associated with substantial morbidity and early mortality. There are currently no disease-modifying therapies, underscoring a critical and urgent need for treatments that address the underlying mitochondrial dysfunction. **About PX578** PX578 is a first-in-class, CNS penetrant small molecule activator of the mitochondrial polymerase POLG designed to increase mitochondrial DNA (mtDNA) levels, enhance mitochondrial function and improve quality of life by halting or reversing disease progression across mitochondrial disorders, including POLG-mediated primary mitochondrial disease, a rare and often devastating condition for which no approved disease-modifying therapies currently exist. Preclinical studies across multiple in vitro and in vivo models, as well as a recently completed Phase 1 healthy volunteers study, support the disease-modifying potential of PX578 and its advancement into Phase 2 clinical evaluation in patients with POLG disease. **About Pretzel Therapeutics** Pretzel Therapeutics, a clinical-stage biotechnology company building a deep, first-in-class pipeline of novel medicines designed to restore mitochondrial function, improve cellular energetics and impede disease progression across a range of neurological and rare diseases. The Company’s lead therapeutic candidate, PX578, is expected to enter Phase 2 clinical study for individuals with POLG disease in late 2026. The company is headquartered in Waltham, MA, and has research facilities in Mölndal, Sweden. For more information, visit www.pretzeltx.com. **Forward-Looking Statements** This press release contains “forward-looking statements” that involve substantial risks, assumptions, and uncertainties. Forward-looking statements are often identified by the use of words such as, but not limited to, “believe,” “estimate,” “intend,” “may,” “plan,” “potentially,” “will,” “expect,” “enable,” “likely” or the negative of these terms or other similar expressions. All statements, other than statements of historical facts, regarding management’s expectations, beliefs, goals, plans or Pretzel’s prospects should be considered forward-looking statements. Readers are cautioned that actual results may differ materially from projections or estimates due to a variety of important factors. These forward-looking statements are made as of the date of this presentation, and Pretzel assumes no obligation to update the forward-looking statements, or to update the reasons why actual results could differ from those projected in the forward-looking statements, except as required by law. **Media contact** Gina Nugent **Clinical contact** **Business Development contact** Baruch Harris, Ph.D., Chief Operating Officer **Categories:** MitoAction in the News, Mitochondrial Disease News, Press Releases **Tags:** fda, Medicine, POLARIS study, POLG, Pretzel Therapeutics, PX578 --- ### [Mighty Therapeutics, Formerly Stealth BioTherapeutics, Announces New Name Honoring the Mitochondrial Disease Community](https://www.mitoaction.org/mighty-therapeutics-formerly-stealth-biotherapeutics-announces-new-name-honoring-the-mitochondrial-disease-community/) **Published:** June 16, 2026 **Author:** Michael Green **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 16, 2026 **NEEDHAM, Mass., June 16, 2026 —** Stealth BioTherapeutics Holdings Inc., a commercial-stage biotechnology company focused on the discovery, development, and commercialization of novel therapies for rare and age-related diseases driven by mitochondrial dysfunction, today announced it will now operate as Mighty Therapeutics (the “Company” or “Mighty”) following the company’s evolution into a commercial-stage biotechnology company and reflecting its continued leadership in pioneering mitochondrial medicine. The rebrand follows the U.S. Food and Drug Administration (FDA)’s accelerated approval and the commercial launch of FORZINITY™ (elamipretide) injection for patients weighing at least 30 kg with Barth syndrome. This milestone introduced a new class of therapies offering hope for future therapeutic innovation for individuals living with mitochondrial disease. “Mighty Therapeutics honors the patients and families who inspire our work every day,” said Reenie McCarthy, chief executive officer of Mighty Therapeutics. “Their partnership, trust, and advocacy continue to shape our science and strengthen our commitment to advancing therapies that target mitochondrial dysfunction.” Mighty is advancing therapies designed to directly target the mitochondrial dysfunction underlying a range of rare and age-related diseases. Through its differentiated scientific focus on bioenergetics, development expertise, and maturing pipeline, the company is helping define the emerging field of mitochondrial medicine. “The mitochondrial disease community has long hoped for greater visibility, scientific investment, and therapeutic advancement,” said Kira Mann, chief executive officer of MitoAction. “Mighty Therapeutics openly centering patients and families in its identity is an encouraging moment for our community and for the future of this field.” Walker Burger, an individual living with Barth syndrome, shared what the new name means to him personally. “When I hear the word ‘Mighty,’ I think about continuing to push forward even when things are hard,” said Burger. “Living with Barth syndrome takes strength every day. To see a company choose a name that reflects how strong this community is makes me feel seen and hopeful for what comes next.” The company recently reported strong early commercial momentum for FORZINITY, including broad reimbursement access, rapid patient onboarding timelines, and widespread adoption of its Mito Assist™ patient support program. Mighty continues to expand its medical and commercial infrastructure to support patients and families, and to educate healthcare providers and treatment centers across the United States. The company is also progressing clinical and regulatory initiatives to address post marketing commitments and support potential label expansion for younger children living with Barth syndrome. Looking forward, Mighty remains focused on expanding the potential of mitochondrial medicine to other diseases of mitochondrial dysfunction. These include polymerase-gamma related mitochondrial disease, where ongoing regulatory engagement is planned to support pivotal trial initiation, and dry age-related macular degeneration (AMD), where the company’s fully enrolled ReNEW Phase 3 clinical trial is approaching completion in late 2027 and its Phase 2 clinical trial of bevemipretide topical ophthalmic drops is expected to start by year end. Beyond these programs, Mighty continues to innovate in mitochondrial medicine by investigating the role of mitochondria in aging and other diseases of mitochondrial dysfunction. The company will present data from a Phase 2a pilot study in older individuals at the American Aging Association in June. The company is also advancing preclinical initiatives to inform potential development for Parkinson’s disease, fatty acid oxidation disorders, Friedreich’s ataxia, Leigh syndrome and others. The rebrand to Mighty Therapeutics will be implemented across the company’s corporate identity, website, and communications materials over the coming weeks. Learn more at www.mightytx.com ## About Mighty Therapeutics Mighty Therapeutics is advancing novel therapies for people living with diseases involving mitochondrial dysfunction. Grounded in rigorous science and meaningful patient partnerships, the company is building a proprietary pipeline to directly address bioenergetic deficits at the source. In September 2025, Mighty marked a historic milestone with the U.S. Food and Drug Administration (FDA) approval of its first commercial therapy, establishing both the first FDA-approved treatment for Barth syndrome and the first FDA-approved therapy to directly target mitochondria. Today, Mighty’s development portfolio encompasses rare and age-related diseases. Mighty continues to develop elamipretide in Barth syndrome, polymerase gamma related mitochondrial disease and dry age-related macular degeneration. Mighty is also progressing its next-generation clinical candidate, bevemipretide, for ophthalmic and neurological pathologies, and continues to develop preclinical assets SBT-255 and SBT-589 for rare mitochondrial disorders. For more information, visit www.mightytx.com. ## About FORZINITY™ (elamipretide) injection ### Indication FORZINITY™ is a mitochondrial cardiolipin binder indicated to improve muscle strength in adult and pediatric patients with Barth syndrome weighing at least 30 kg. This indication is approved under accelerated approval based on an improvement in knee extensor muscle strength, an intermediate clinical endpoint. Continued approval for this indication may be contingent upon verification and description of clinical benefit in a confirmatory trial(s). ### Important Safety Information ##### Contraindications FORZINITY is contraindicated in patients with serious hypersensitivity to elamipretide or any of the excipients in FORZINITY. ##### Warnings and Precautions Benzyl Alcohol Toxicity – Do Not Use in Neonates Serious and fatal reactions (including metabolic acidosis progressing to neurotoxicity and gasping syndrome) have occurred in preterm and low–birth weight neonates receiving benzyl alcohol (BA)-containing drugs. FORZINITY contains 20 mg BA/mL and is not approved for use in neonates or for IV administration. ##### Hypersensitivity Reported reactions include rash, papular lesions, eczema/dermatitis, cough, and serious allergic reactions requiring emergency medical intervention. Reactions may occur minutes to months after starting treatment. Monitor patients for signs and symptoms during treatment. Discontinue FORZINITY permanently if a serious hypersensitivity reaction occurs. ##### Adverse Reactions Adverse reactions occurring more commonly on FORZINITY than on placebo included injection site reactions such as injection site erythema, pain, induration, pruritus, bruising, and urticaria. ##### Eosinophilia Modest elevations in eosinophil counts (peak ~90 days) occurred but were not associated with clinical symptoms. To report SUSPECTED ADVERSE REACTIONS, contact FDA at 1-800-FDA-1088 or www.fda.gov/medwatch. Please see Full Prescribing Information for FORZINITY. ## About Barth Syndrome BTHS is an ultra-rare genetic condition characterized by mitochondrial abnormalities leading to muscle weakness, exercise intolerance, debilitating fatigue, heart failure, recurrent infections, and delayed growth. The disease is associated with reduced life expectancy, with 85% of early deaths occurring by age 5. BTHS occurs primarily in males and is estimated to affect one in 1,000,000 male births. There are no EMA-approved therapies for patients with BTHS. ## Contact Information **Media Contact** Ascent Strategic Communications media@ascentcomms.com **Investor Contact** Precision AQ Austin Murtagh Austin.Murtagh@precisionaq.com **Patient Advocacy** PatientAdvocacy@mightytx.com *SOURCE Stealth BioTherapeutics Inc.* **Categories:** MitoAction in the News, Mitochondrial Disease News, Press Releases **Tags:** barth syndrome, FORZINITY, Mighty Therapeutics, Stealth BioTherapeutics --- ### [Khondrion Announces First Patient Dosed in Pivotal Phase 3 KHENERFIN Study of Sonlicromanol in Mitochondrial DNA 3243A>G Primary Mitochondrial Disease](https://www.mitoaction.org/khondrion-announces-first-patient-dosed-in-pivotal-phase-3-khenerfin-study-of-sonlicromanol-in-mitochondrial-dna-3243ag-primary-mitochondrial-disease/) **Published:** April 16, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/04/Kondrion.png)April 16, 2026 > - *52-week Phase 3 trial evaluating the efficacy and safety of sonlicromanol, a novel brain-penetrant redox-modulator with anti-ferroptotic and anti-inflammatory properties, in adult patients with the most common genetic defect causing primary mitochondrial disease, m.3243A>G* > - *Primary endpoints focus on most bothersome and frequently occurring effects of disease – chronic fatigue and muscle weakness – supported by consistent signals observed in Phase 2b program* > > **NIJMEGEN, The Netherlands – April 16, 2026** – Khondrion today announced that the first patient has been dosed in the pivotal, randomized, placebo-controlled Phase 3 *KHENERFIN* study (NCT 06451757) evaluating the efficacy and safety of sonlicromanol, its investigational small molecule for m.3243A>G-related Primary Mitochondrial Disease. > > “The initiation of patient dosing in our Phase 3 KHENERFIN study marks an important milestone in the development of a potential treatment for patients with m.3243A>G primary mitochondrial disease,” said Jasper Levink, CEO of Khondrion. “This trial is designed to rigorously evaluate the safety and efficacy of sonlicromanol in a larger, randomized setting, with endpoints reflecting key aspects of disease burden, building on the signals observed in our earlier clinical program.” > > Dr. Mirian Jansen, head of the clinical metabolic department of the Radboudumc and PI in the KHENERFIN study noted: “m.3243A>G mitochondrial disease is a progressive and debilitating condition with significant unmet medical need, affecting patients across multiple organ systems and often leading to increasing disability over time. As investigators, we are committed to advancing this Phase 3 study and working closely with patients to ensure high-quality data collection on outcomes that matter in daily life. This trial is designed to determine whether this investigational therapy can meaningfully impact patient function and fatigue.” > > “The most burdensome symptoms m.3243A>G patients experience are fatigue and muscle weakness. These symptoms are often debilitating and impact every area of life. The initiation of the Phase 3 *KHENERFIN* study by Khondrion is a significant achievement and provides hope to the international mitochondrial disease community. As the Chair of International Mito Patients (IMP), which represents 25 mitochondrial disease patient advocacy groups across five continents, we are encouraged by the progress being made in research and drug development for those living with Primary Mitochondrial Diseases. We optimistically await the outcome of the trial.” stated Paula Morandi, Chair of IMP. > > Jan Smeitink, Khondrion’s founder and CMO continued: “The KHENERFIN study will enroll up to 220 adult patients from 18 years and older across Europe, the United Kingdom and the US with genetically confirmed m.3243A>G Primary Mitochondrial Disease. Participants will be randomized 1:1 to receive sonlicromanol or placebo over a 52-week treatment period. Participants will receive 90 mg sonlicromanol or matching placebo as dispersible tablets twice daily. The study’s two independent primary endpoints are change in NeuroQoL Fatigue Short Form score and performance on the 5-times sit-to-stand test, reflecting key aspects of disease burden.” NOTES TO EDITORS **About Khondrion** Khondrion is a late-stage clinical biopharmaceutical company focused on developing therapies for patients with primary mitochondrial disease (PMD). Its lead asset, sonlicromanol, is a brain-penetrant redox modulator with anti-inflammatory properties designed to target key pathways underlying mitochondrial dysfunction. Sonlicromanol is being developed as a potential disease-modifying therapy targeting core disease mechanisms across multiple organ systems. Sonlicromanol has been evaluated in multiple clinical trials in patients with m.3243A>G PMD, including a randomized Phase 2b program and long-term extension studies. Named patients have received sonlicromanol for over three years, providing long-term safety and treatment experience. Sonlicromanol has received orphan drug designation in Europe for inherited mitochondrial oxidative phosphorylation defects, and in the United States for inherited mitochondrial respiratory chain disorders. It has also been granted Rare Pediatric Disease Designation in the United States for MELAS. Khondrion is also exploring additional applications of its redox-modulating compounds in other diseases characterized by mitochondrial dysfunction. **About Primary Mitochondrial Disease** Primary mitochondrial diseases are a group of genetic disorders caused by defects in mitochondrial function, leading to impaired cellular energy production and progressive cellular dysfunction and loss. These conditions can affect multiple organ systems and are associated with a wide range of symptoms that worsen over time, including fatigue, muscle weakness, neurological impairment, diabetes, and cardiac involvement. The m.3243A>G variant in mitochondrial DNA is one of the most common genetic causes of primary mitochondrial disease and is associated with a spectrum of clinical phenotypes, including MELAS, maternally inherited diabetes and deafness (MIDD), and mixed multi-system presentations. Learn more: . **Forward-looking statements** This press release contains forward-looking statements regarding, among other things, the expected conduct, progress and timing of the company’s clinical trials. These statements are based on current expectations and assumptions and are subject to risks and uncertainties beyond the company’s control that could cause actual results to differ materially. Forward-looking statements may be identified by words such as “aim,” “believe,” “expect,” “anticipate,” “plan,” “may,” “will,” “could,” and similar expressions. Except as required by law, the company undertakes no obligation to update these statements. **For more information, please visit [www.khondrion.com](http://www.khondrion.com).** Contacts: Khondrion BV Jasper Levink +31-24-7635000 info@khondrion.com **Categories:** MitoAction in the News, Mitochondrial Disease News, Press Releases --- ### [Navigating the FDA’s Complete Response Letter and identifying a path forwardfor SL1009 (DCA).](https://www.mitoaction.org/navigating-the-fdas-complete-response-letter-and-identifying-a-path-forwardfor-sl1009-dca/) **Published:** April 9, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2024/12/Saol-logo-FINAL_®-1024x442.png)March 31, 2026 Dear Members of the PDCD Community, We are deeply grateful for your support and advocacy throughout this process, particularly as we have worked to navigate the FDA’s Complete Response Letter and identify a path forward for SL1009 (DCA). Over the past several months, this community has shown up in meaningful ways by sharing your stories, engaging with policymakers, and continuing to push for progress when it mattered most. That collective effort has made a difference. On March 26th, we held our Type C meeting with the FDA to discuss the potential resubmission of our New Drug Application for SL1009 (DCA) for Pyruvate Dehydrogenase Complex Deficiency (PDCD). We were encouraged by the outcome of this meeting. The Agency provided guidance on the content and focus of the resubmission, helping to further clarify a feasible path forward. Importantly, no additional meetings were requested at this time, allowing us to move ahead with preparing our resubmission. While work remains, we view this as meaningful progress and a step forward that reflects not only the data but the strength and unmet needs of this community. We are moving forward with urgency and remain focused on bringing this therapy to individuals with PDCD as quickly as possible. As we continue this process, we will keep advocating for regulatory flexibility and speed. Thank you for continuing to stand with us and with one another. We’re committed to moving forward together. With gratitude, Dave Penake, CEO Saol Therapeutics Inc. **Categories:** MitoAction in the News, Mitochondrial Disease News, Press Releases --- ### [FDA Approval of KYGEVVI Marks a Defining Moment for Mitochondrial Disease Community and Families Affected by TK2d](https://www.mitoaction.org/fda-approval-of-kygevvi-marks-a-defining-moment-for-mitochondrial-disease-community-and-families-affected-by-tk2d/) **Published:** November 5, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **FOR IMMEDIATE RELEASE** **Contact:** Emily Grandahl Marketing Coordinator, MitoAction emily@mitoaction.org (888) 648-6228 www.mitoaction.org ## FDA Approval of KYGEVVI Marks a Defining Moment for Mitochondrial Disease Community and Families Affected by TK2d Boston, MA — November 3, 2025— MitoAction proudly announces the U.S. Food and Drug Administration’s (FDA) approval of KYGEVVI® (doxecitine and doxribtimine), a groundbreaking therapy developed by UCB for the treatment of thymidine kinase 2 deficiency (TK2d). This milestone marks a historic step forward for the mitochondrial disease community, offering long-awaited hope to patients and families who have endured years without effective treatment options. Remarkably, this approval represents the second FDA authorization for a mitochondrial disease therapy in just six weeks, underscoring the accelerating momentum in mitochondrial medicine and the power of collaboration among patients, researchers, and industry partners driving progress toward meaningful change. KYGEVVI® has been granted approval by the FDA for the treatment of adults and pediatric patients living with TK2d, with an age of symptom onset on or before 12 years. It is the first and only approved treatment for these patients living with TK2d. TK2d is an ultra-rare, life-threatening, genetic mitochondrial disease characterized by progressive and severe muscle weakness with no approved treatment options beyond supportive care until now. It is estimated that the worldwide prevalence of TK2d is 1.64 cases per 1,000,000 people. “The approval of doxecitine and doxribtimine represents a pivotal moment for the TK2d community who previously had no FDA-approved treatment options for this rare genetic mitochondrial disease beyond supportive \[palliative\] care,” said Donatello Crocetta, Chief Medical Officer at UCB. “We extend heartfelt thanks to the patients, families and friends, advocates, healthcare providers and dedicated clinical trial teams who have partnered with us on this important journey.” “Today’s decision by the FDA brings hope to so many in our community who have waited years for a breakthrough,” said Kira Mann, CEO of MitoAction. “For those affected by mitochondrial disease, specifically TK2d, this moment represents more than scientific progress, it’s a recognition of their perseverance, courage, and strength. It reminds us that when patients, researchers, regulators, and industry work together, we move closer to a future where effective treatments are not just possible, but within reach.” #### About MitoAction Founded in 2005, MitoAction is a leading national nonprofit dedicated to improving the quality of life for children, adults, and families affected by mitochondrial disease, a complex and often devastating condition. Through education, advocacy, support, and community-building, MitoAction empowers patients and caregivers to navigate daily challenges, connect with critical resources, and engage in groundbreaking initiatives that accelerate research and therapeutic progress. From direct family support programs to national policy advocacy and clinical collaborations, MitoAction is committed to transforming hope into tangible impact, ensuring that no one faces mitochondrial disease alone. #### More Information about KYGEVVI® For more information about KYGEVVI® including prescribing information and instructions for use, please visit . **Categories:** MitoAction in the News, Mitochondrial Disease News, Press Releases --- ### [Tisento Therapeutics Announces Publication of MELAS Interview Study, Incorporating Patients’ Perspectives to Elucidate Symptoms and Impacts of Rare Mitochondrial Disease](https://www.mitoaction.org/tisento-therapeutics-announces-publication-of-melas-interview-study-incorporating-patients-perspectives-to-elucidate-symptoms-and-impacts-of-rare-mitochondrial-disease/) **Published:** November 3, 2025 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") *Originally Published by [Tisento Therapeutics](https://www.tisentotx.com/news/tisento-therapeutics-announces-publication-of-melas-interview-study-incorporating-patients-perspectives-to-elucidate-symptoms-and-impacts-of-rare-mitochondrial-disease) on November 3, 2025.* *Findings Demonstrate the Importance of Addressing Both Fatigue and Cognitive Symptoms of MELAS* CAMBRIDGE, Mass., November 3, 2025 – Tisento Therapeutics today announced that the findings from the company’s [interview study](https://www.tisentotx.com/news/interview-study) in MELAS (Mitochondrial Encephalomyopathy, Lactic Acidosis, and Stroke-like Episodes) were published on October 27, 2025, in the *Journal of Patient-Reported Outcomes*. Based on qualitative interviews with five expert clinicians and 16 adults with MELAS in North America, the study aimed to identify, describe, and substantiate important and relevant signs, symptoms, and health-related quality-of-life impacts of this rare mitochondrial disease. The publication, entitled “Signs, Symptoms, and Health-Related Quality of Life in MELAS: Measuring What’s Important from the Patient and Clinician Perspectives,” can be viewed [here](https://link.springer.com/article/10.1186/s41687-025-00962-6?utm_source=rct_congratemailt&utm_medium=email&utm_campaign=oa_20251027&utm_content=10.1186%2Fs41687-025-00962-6). This groundbreaking work informed the clinical outcome assessments and endpoint strategy for the company’s ongoing global Phase 2b [PRIZM study](https://www.tisentotx.com/prizm), which is evaluating the impact of investigational zagociguat treatment on fatigue, cognitive performance, and other key aspects of MELAS. “Those living with MELAS have historically faced a lack of understanding about their condition and their lived experiences. This study addresses a critical research gap in this rare disease,” said Kira Mann, chief executive officer of MitoAction. “As this study shows, MELAS manifests in a wide range of symptoms, including fatigue and cognition, and profoundly affects multiple aspects of patients’ lives. Those living with MELAS urgently need treatments that target the most debilitating aspects of this disease.” Patients in the study reported a total of 35 signs and symptoms. The most frequently reported symptoms were physical fatigue (n=15, 93.8%), hearing loss (n=13, 81.3%), mental fatigue (n=12, 75.0%), exercise intolerance (n=11, 68.8%), and memory problems (n=11, 68.8%). In addition, 68 health-related quality-of-life impact concepts emerged, which were categorized into 15 impact domains. The impact domains reported by the most participants were adaptive behaviors (n=14, 87.5%); work impacts (n=14, 87.5%); and emotional function (n=13, 81.3%). “At Tisento, we believe that meaningful innovation starts with listening to the lived experiences of those affected by a disease. We are pleased that the MELAS interview study has advanced the understanding of this rare disease by elucidating both patients’ and physicians’ perspectives about the most important symptoms to address,” said Peter Hecht, Ph.D., chief executive officer of Tisento. “We’re grateful to everyone who participated, as their insights helped shape our clinical program. We are excited to continue advancing zagociguat, an investigational treatment for MELAS with the potential to improve both fatigue and cognitive function.” **About the PRIZM Study** PRIZM – a Phase 2b Randomized, Placebo-Controlled Trial Investigating Zagociguat in MELAS – is evaluating the efficacy and safety of oral zagociguat 15 mg or 30 mg compared to placebo when administered once-daily for 12 weeks in participants with genetically and phenotypically defined MELAS. The PRIZM study has a crossover design, with two 12-week treatment periods separated by a 4-week washout period. All participants will receive zagociguat during one of the 12-week periods and placebo during the other. Participants who complete treatment in the study have the opportunity to enroll in an open-label extension study. The global PRIZM study is enrolling approximately 44 participants at mitochondrial disease centers of excellence in the U.S., Italy, Germany, United Kingdom, Australia, and Canada. More information may be found at [www.tisentotx.com/prizm](http://www.tisentotx.com/prizm) and ClinicalTrials.gov ([NCT06402123](https://clinicaltrials.gov/study/NCT06402123)). **About Zagociguat** Zagociguat is a once-daily, oral, clinical-stage investigational medicine with potential to positively impact both peripheral and central nervous system manifestations of mitochondrial diseases. Zagociguat stimulates soluble guanylate cyclase (sGC), an enzyme that is found in virtually every cell in every tissue of the body and is part of a system of cellular mechanisms that control critical physiological functions including neuronal function and blood flow. A first-in-class, brain-penetrant sGC stimulator, zagociguat is hypothesized to rebalance dysregulated cellular pathways in MELAS. By restoring cellular functions that support mitochondria, zagociguat may help restore mitochondrial energy production and physiological function. In a Phase 2a study in patients with MELAS, zagociguat exhibited a favorable safety profile, exposure throughout the body including in the central nervous system, and improvements in neuronal function, mitochondrial function, and blood flow in the brain. Zagociguat is currently being evaluated as a treatment for MELAS in the Phase 2b PRIZM study. Zagociguat received [Fast Track designation](https://www.tisentotx.com/news/tisento-therapeutics-receives-us-fda-fast-track-designation-for-zagociguat-for-the-treatment-of-melas) from the U.S. Food and Drug Administration for the treatment of MELAS. Fast Track is a process designed to facilitate the development and potentially expedite the review of medicines to treat serious conditions and fill an unmet medical need, with the goal of getting important new drugs to patients earlier. For more information, visit [www.tisentotx.com/our-science](http://www.tisentotx.com/our-science). **About Tisento Therapeutics** Tisento Therapeutics, a privately held biotech company, is developing novel medicines to treat diseases with significant unmet need, beginning with MELAS and other genetic mitochondrial diseases. *Ti sento* means “I hear you” in Italian; our approach to innovation begins with listening to patients and then channeling what we learn into decisive actions that shape our research and clinical programs. Tisento is guided by a high-caliber internal team of biopharma veterans and an extensive external network of expert physicians, patient advocacy groups, researchers, industry-leading vendors, and other close collaborators who are partners in our mission to develop meaningful treatments for mitochondrial diseases. Learn more at our website, [www.tisentotx.com](http://www.tisentotx.com/), or connect with us on [LinkedIn](https://www.linkedin.com/company/tisentotx), [Facebook](https://www.facebook.com/tisentotx), X ([@tisentotx](https://twitter.com/tisentotx)), or [Bluesky](https://bsky.app/profile/tisentotx.bsky.social). **Categories:** Mitochondrial Disease News --- ### [Stealth BioTherapeutics Announces FDA Accelerated Approval of FORZINITY™ (elamipretide HCl), the First Therapy for Progressive and Life-limiting Ultra-rare Genetic Disease Barth Syndrome](https://www.mitoaction.org/stealth-announces-fda-approval/) **Published:** September 24, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") *“The approval of FORZINITY, the first treatment option for Barth syndrome and the first approved mitochondria-targeted therapeutic, is a pivotal victory for the Barth syndrome community and offers hope for expedited regulatory attention to other ultra-rare diseases,” said Reenie McCarthy, Stealth’s Chief Executive Officer.* Click [HERE](https://stealthbt.com/stealth-biotherapeutics-announces-fda-accelerated-approval-of-forzinity-elamipretide-hcl-the-first-therapy-for-progressive-and-life-limiting-ultra-rare-genetic-disease-barth-syndrome/) to read the full press release from Stealth Biotherapeutics ![](https://www.mitoaction.org/wp-content/uploads/2025/03/Stealth_BioTherapeutics_Logo-1024x537.jpg) **Categories:** Mitochondrial Disease News **Tags:** barth syndrome, fda --- ### [BPGbio Sponsors MitoAction Energy Walk at Boston’s Franklin Park Zoo on September 27th, 2025](https://www.mitoaction.org/bpgbio-sponsors-mitoaction-energy-walk/) **Published:** September 24, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ***Company honored in its commitment to patients and families living with mitochondrial disease; invites the community to walk with BPGbio colleagues and MitoAction*** **BOSTON, MA — September 12, 2025** — BPGbio, Inc., a biology-first, AI-powered, clinical-stage biopharma focused on mitochondrial biology and protein homeostasis, today announced its sponsorship of the **MitoAction Energy Walk** at Boston’s **Franklin Park Zoo** on **Saturday, September 27, 2025**. The family-friendly event brings together patients, caregivers, clinicians, advocates, and supporters to raise awareness of **mitochondrial diseases** and to fund programs that improve quality of life for those affected. “As a company committed to advancing mitochondrial medicine, we’re honored to support MitoAction and the patient community,” said **Niven R. Narain, Ph.D., President & CEO of BPGbio**. “Mitochondria are the cell’s engines, and energy failure is a common denominator across many serious, multi-system diseases such as Primary CoQ10 Deficiency that BPGbio is working on a treatment for. We’re grateful to organizations like MitoAction for rallying the community and raising awareness through events like the Energy Walk.” BPGbio has a longstanding commitment to mitochondrial biology in human disease. The company has built an international research ecosystem spanning industry partners, patient advocacy groups, and academic collaborators to uncover the biological drivers of mitochondrial disorders and translate those insights into potential therapies. As the first company in the world to apply AI and systems medicine to develop treatments, BPGbio is advancing BPM 31510, an investigational therapy designed to target directly to the mitochondria and is planning on a phase 3 trial for Primary CoQ10 Dificiency. “Partnerships like this are essential to move mitochondrial medicine forward,” said **Kira Mann, CEO of MitoAction**. “By uniting patients, families, clinicians, and industry leaders at the Energy Walk, we build awareness today while helping catalyze better solutions for tomorrow. We appreciate BPGbio’s commitment to developing a treatment for the Primary CoQ10 Deficiency patients and the broader mitochondrial patients’ community.” **Join the Walk** - **Date:** Saturday, September 27, 2025 - **Time:** 6:00 PM ET *(gates open earlier; check event details)* - **Location:** Franklin Park Zoo, 1 Franklin Park Rd, Boston, MA - **Registration & Donations:** Visit MitoAction’s event page to register, donate, or form a team. *(Insert link)* BPGbio encourages employees, families, collaborators, and neighbors to **walk with our team** in support of patients and caregivers navigating mitochondrial disease. Attendees can expect an evening of connection, inspiration, and learning—alongside opportunities to support MitoAction’s year-round patient programs. **Why It Matters** Mitochondrial diseases encompass a diverse group of disorders that impair cellular energy production, affecting multiple organs and systems with symptoms ranging from fatigue and muscle weakness to neurological and cardiac complications. Greater awareness translates into earlier diagnosis, improved care pathways, and sustained momentum for therapeutic innovation. **About BPGbio** ![](https://www.mitoaction.org/wp-content/uploads/2025/09/image.png)![](https://www.mitoaction.org/wp-content/uploads/2025/09/image-2.png)BPGbio is a leading biology-first AI-powered clinical stage biopharma focused on mitochondrial biology and protein homeostasis. The company has a deep pipeline of AI-developed therapeutics spanning oncology, rare disease and neurology, including several in late-stage clinical trials. BPGbio’s novel approach is underpinned by NAi, its proprietary Interrogative Biology Platform, protected by over 500 US and international patents; one of the world’s largest clinically annotated non-governmental biobanks with longitudinal samples; and exclusive access to the most powerful supercomputer in the world. With these tools, BPGbio is redefining how patient biology can be modeled using bespoke Bayesian AI specifically designed for solving large-scale biology challenges. Headquartered in greater Boston, the company is at the forefront of a new era in medicine, combining biology, multi-modal data, and AI to transform the way we understand, diagnose, and treat disease. For more information, visit www.bpgbio.com. **About MitoAction** **MitoAction** is a nonprofit organization founded by patients, parents, and Boston hospital healthcare leaders who had a vision of improving quality of life for children and adults with mitochondrial disease. The organization began in 2005 as an idea and has evolved from a small New England support group to a dynamic, active service organization helping thousands of patients and families. For more information, visit: https://www.mitoaction.org --- **Media Contacts** *media@bpgbio.com* **Categories:** Mitochondrial Disease News **Tags:** Energy Walk --- ### [FDA denies approval for dichloroacetate (DCA), a treatment for Pyruvate Dehydrogenase Complex Deficiency (PDCD).](https://www.mitoaction.org/fda-denies-approval-for-dca/) **Published:** September 4, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/09/Screenshot-2025-09-04-at-3.02.16-PM-1024x180.png)Earlier today, Saol Therapeutics shared the U.S. Food and Drug Administration (FDA) has issued a Complete Response Letter (CRL) regarding the company’s application for dichloroacetate (DCA) to treat Pyruvate Dehydrogenase Complex Deficiency (PDCD). In this CRL, the FDA declined to approve DCA at this time and requested that Saol initiate a new clinical trial to address remaining questions. Attached you will find a community statement from Saol. We are deeply disappointed by this outcome and mindful of what it means for families awaiting options. Our collective organizations and Saol remain committed to advocating for timely, patient-centered next steps, engaging with regulators, and keeping you informed as more details emerge. In response to this decision, we have joined with fellow PDCD and mitochondrial disease-related patient advocacy groups to issue the below statement and call to action. On behalf of the mitochondrial disease community, we, the United Mitochondrial Disease Foundation, MitoAction, Cure Mito Foundation, Hope for PDCD, and the Elizabeth Watt PDCD Research Fund, collectively express our deep disappointment with the FDA’s recent decision not to approve dichloroacetate (DCA) for the treatment of the mitochondrial disease Pyruvate Dehydrogenase Complex Deficiency (PDCD). While we fully support rigorous scientific standards, regulatory flexibility is essential for rare disease populations like PDCD, where delays in access to potentially life-saving therapies can lead to irreversible damage – or even death. Make no mistake, that is the risk when it comes to DCA not being available for PDCD patients. PDCD is a genetic disorder of carbohydrate metabolism and the most common cause of congenital lactic acidosis. Families in the DCA trial report significant quality of life improvements. There are patients in our community who have been on some form of this therapy for nearly 30 years. This well-understood drug with a strong safety profile is supported by both patients and clinicians. The approval of DCA would have addressed a profound unmet medical need for affected PDCD patients in the US. Instead, another generation of PDCD patients face an uncertain future. The FDA has statutory authority, and a moral and ethical obligation, to apply flexibility when evaluating therapies for life-threatening rare diseases like PDCD. When this authority is not exercised, it raises serious questions about whether the rare disease drug approval pathway is truly serving the patients it was intended to help. We are asking the FDA to continue to work with Saol Therapeutics to find an expedited path forward for DCA. There is simply too much on the line for any other option. As the unified voice of the mitochondrial disease community, we will not stop advocating until PDCD patients gain access to the therapies they need and deserve. Our groups will be scheduling a call to go over some suggested talking points and the most effective way to tell the story of PDCD and DCA shortly. Until then, we encourage you to reach out to your members of Congress to help them better understand PDCD and the importance of regulatory flexibility for therapies like DCA. [Click HERE for a form letter that will be sent straight to your representative.](https://igniteadvocacy.com/go/ask-congress-to-encourage-hhs-amp-fda-to-apply-regulatory-flexibility-for-dca/881) Saol remains committed to this community and plans to host a community town hall on Thursday, Sept. 18 at 3pm ET. Watch for an invite in the coming days. We encourage you to attend and submit whatever questions you may have. Sincerely, United Mitochondrial Disease Foundation MitoAction Cure Mito Foundation Hope for PDCD Elizabeth Watt PDCD Research Fund **Click [HERE](https://www.mitoaction.org/wp-content/uploads/2025/09/Saol-Community-Letter_final-04Sept25-1.pdf) to read the full Community Letter from Saol Therapeutics** **Categories:** Mitochondrial Disease News **Tags:** barth syndrome, fda --- ### [MitoAction Advocates for Barth Syndrome Community in FDA Listening Session](https://www.mitoaction.org/mitoaction-advocates-for-barth-syndrome-community-in-fda-listening-session/) **Published:** April 1, 2024 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **FOR IMMEDIATE RELEASE** \[Boston, MA, April 1, 2024\] – MitoAction, a leading nonprofit organization dedicated to improving the lives of individuals and families affected by mitochondrial disease, recently convened a pivotal FDA listening session on March 22nd, 2024. This session served as a crucial platform for MitoAction to underscore the persistent unmet needs and ongoing challenges faced by the Barth syndrome community. Barth syndrome is an ultra-rare, life-threatening genetic disorder characterized by cardiac and skeletal muscle weakness, as well as immune system dysfunction. Individuals living with Barth Syndrome and their families continue to confront significant obstacles in accessing appropriate care and therapies. There are currently no FDA approved therapies for Barth syndrome. The FDA listening session organized by MitoAction provided an invaluable opportunity for stakeholders within the Barth syndrome community to engage directly with regulatory authorities. During the session, participants, who included Key Opinion Leaders and moms of boys diagnosed with this rare disorder, shared compelling insights into the lived experiences of individuals affected by Barth syndrome, highlighting the urgent need for accelerated research and expanded treatment options. “MitoAction remains steadfast in our commitment to advocating for the Barth syndrome and the entire mitochondrial disease community,” said Kira Mann, CEO at MitoAction. “Our recent FDA listening session was a pivotal moment for amplifying the voices of those affected by this devastating condition. By fostering dialogue and collaboration with the Barth Syndrome Foundation and the FDA, we are working tirelessly to drive positive change and improve outcomes for individuals living with Barth syndrome.” Through collaborative efforts with regulatory agencies like the FDA, MitoAction continues to champion initiatives aimed at advancing research, accelerating drug development, and enhancing access to care for individuals and families affected by mitochondrial diseases, including Barth syndrome. For more information about MitoAction and its advocacy efforts, please visit www.mitoaction.org ##### About MitoAction: MitoAction is a nonprofit organization dedicated to improving the quality of life for individuals and families affected by mitochondrial disease through support, education, advocacy, and clinical research initiatives. Since its founding in 2005 MitoAction has been at the forefront of empowering the mitochondrial disease community and driving positive change in the field of mitochondrial medicine. MitoAction serves families from across the U.S. and the globe, working tirelessly to offer comprehensive, up-to-date, expert resources, information, and support at no cost to any patient, family, clinician, educator, or community member. Learn more at www.mitoaction.org. **Press Contact** **Kira Mann**, CEO, MitoAction E-mail: www.mitoaction.org [Press-Release-FDA-Lisitenting-Session-Barth-Syndromw.docx](https://www.mitoaction.org/wp-content/uploads/2024/04/Press-Release-FDA-Lisitenting-Session-Barth-Syndromw.docx.pdf) **Categories:** Mitochondrial Disease News **Tags:** barth syndrome, fda --- ### [Mitochondrial Disease Researchers Win Major Award](https://www.mitoaction.org/mitochondrial-disease-researchers-win-major-award/) **Published:** February 25, 2024 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The Lurie Prize in Biomedical Sciences recognizes outstanding achievement by a promising young scientist (52 or younger) in biomedical research. It is worth $100,000, and awarded annually by the Foundation for the National Institutes of Health. Prizewinners are selected, by a jury of six distinguished biomedical researchers, from a list of nominations. This year, for the first time ever, the two winners are both leaders in research on mitochondrial disease, Drs. Navdeep Chandel of Northwestern University and Vamsi Mootha of Howard Hughes Medical Institute and Harvard Medical School. It is thrilling to see mitochondrial research recognized at the highest levels in biomedicine! From the press release: “Navdeep S. Chandel, Ph.D., of Northwestern University Feinberg School of Medicine, and Vamsi Mootha, M.D., of Howard Hughes Medical Institute and Harvard Medical School, as recipients of the 2023 Lurie Prize in Biomedical Sciences. Each has made important and distinct discoveries in the field of mitochondrial science by exploring the characteristics and functions of mitochondria in human physiology and disease. “Each of this year’s Lurie Prize recipients are breaking new ground in mitochondrial research,” said Dr. Julie Gerberding, President and CEO of the FNIH. “Drs. Chandel and Mootha embody the innovative spirit of the Lurie Prize as they advance our understanding of the many roles these complex structures play in health and disease.” Dr. Navdeep Chandel is the David W. Cugell Professor of Medicine, Biochemistry, and Molecular Genetics at Northwestern University Feinberg School of Medicine. The Chandel research team has shown that mitochondria do much more than supply energy to cells. His research team has revealed how mitochondria function as signaling organelles that control the body’s normal functions and impact diseases, including cancer and inflammation. “Mitochondrial signals are critical regulators and unraveling their complex functions could advance the design of new therapies,” said Dr. Chandel. “Receiving the Lurie Prize honors the entire past and present Chandel Lab. It is a celebration of my mentors, collaborators, and my mentees and a recognition of the importance of progress in the mitochondrial field.” Dr. Vamsi Mootha is an investigator of the Howard Hughes Medical Institute, investigator in the Department of Molecular Biology at Massachusetts General Hospital, a member of the Broad Institute of MIT and Harvard, and a professor of Systems Biology and Medicine at Harvard Medical School. His laboratory team combines genomics and computation with classic biochemistry and physiology to gain a holistic view of the genes and proteins relevant to mitochondrial function. Although mitochondria contain their own DNA that encodes just 13 proteins, the Mootha research team has identified the other 99% of mitochondrial proteins encoded by nuclear DNA and compiled their findings in a widely used reference tool used to discover new protein functions and disease genes. “I’ve dedicated much of my research career to treating these organelles as a ‘system,’ trying to define all of their individual components, how they operate together, and uncovering what happens when they are disrupted,” said Dr. Mootha. “I am deeply humbled to receive the Lurie Prize. I have been lucky to assemble an amazing group of multidisciplinary researchers who work in synergy to impact science and medicine. This award really honors the contributions of past and present lab members.” The Foundation for the National Institutes of Health (FNIH) is a not-for-profit, 501(c)(3) charitable organization established by the US Congress in 1990. Located in North Bethesda, MD, the FNIH raises private-sector funds, and creates and manages alliances with public and private institutions in support of the mission of the National Institutes of Health (NIH). [](https://fnih.org/.../the-fnih-awards-2023-lurie-prize-in.../?fbclid=IwAR3Gv-Y1ObefnPmZ0NmMMUMTiyzln17-FYpiR9Qy88i_KqHHDh4YRv2TM90) **Categories:** Mitochondrial Disease News --- ### [Mito Research on the Fly: Dissecting the complexity of Complex I diseases using an insect model species](https://www.mitoaction.org/mito-research-on-the-fly-dissecting-the-complexity-of-complex-i-diseases-using-an-insect-model-species/) **Published:** February 24, 2024 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [https://cob.silverchair-cdn.com/cob/content\_public/journal/bio/jam/10.1242\_bio.060278/3/bio060278.pdf?Expires=1711827491&Signature=G4px-hX-CQRWqXepaWcuG0-Y-QYF06N9pma-LYMFv5E9CQq~vlJaOQI2uuSjvfqBwOSWi3OMmI79SiubfEXv94SN1ek0zC2F01FEYHL7El0mIQtZ-GTaXhO6IjvA-oOCPOcMpSjZomYdtICQ2E9FpDyRKP70OsoFX-c2qxbyQ6LnPrRgiFgfraB~UqADJy-WSqYrLgNvjSfnUXahRkSo45PxA9pSq8kAm8Pxjivc59PF27oDji~p2dufwrRQlCvYKzjcgaPRg43qMsmTh8DML0rdu1BZWnxueti5C-Rr6znyJPQQfRWDoQw1JVg28p9n15vtBkZjOIRdKg04gKVFSw\_\_&Key-Pair-Id=APKAIE5G5CRDK6RD3PGA](https://cob.silverchair-cdn.com/cob/content_public/journal/bio/jam/10.1242_bio.060278/3/bio060278.pdf?Expires=1711827491&Signature=G4px-hX-CQRWqXepaWcuG0-Y-QYF06N9pma-LYMFv5E9CQq~vlJaOQI2uuSjvfqBwOSWi3OMmI79SiubfEXv94SN1ek0zC2F01FEYHL7El0mIQtZ-GTaXhO6IjvA-oOCPOcMpSjZomYdtICQ2E9FpDyRKP70OsoFX-c2qxbyQ6LnPrRgiFgfraB~UqADJy-WSqYrLgNvjSfnUXahRkSo45PxA9pSq8kAm8Pxjivc59PF27oDji~p2dufwrRQlCvYKzjcgaPRg43qMsmTh8DML0rdu1BZWnxueti5C-Rr6znyJPQQfRWDoQw1JVg28p9n15vtBkZjOIRdKg04gKVFSw__&Key-Pair-Id=APKAIE5G5CRDK6RD3PGA) One of the great scientific discoveries of the 20th century is the extraordinary similarity among all living species at the molecular level, despite the extreme diversity of their appearance and habits. An especially surprising example was the 1980s finding that nearly all animals share a common small set of genes and molecular pathways that guide embryonic development from the fertilized egg. It did not have to turn out this way! Aside from corroborating the descent of all living things from a single common ancestor, these results have great practical importance for human medicine. Experimental study of biological processes in humans, such as embryonic development, inheritance and many others, especially at the molecular level, is often difficult to impossible. Our long generation times and small family sizes make genetic research extremely slow, and many of the experimental manipulations one might like to do (amputating appendages and the like) are slow, expensive, and/or unethical. Much faster progress is possible if one can identify a so-called model species, in which: (a)generation time is short; (b) large numbers of individuals can be cheaply obtained; (c) ethical barriers to experimentation are minimal; and,(d) ideally, the process in question is similar to, but less complex than, the human equivalent. A leading model species, for over 100 years, has been the common fruit fly, *Drosophila melanogaster*. It is easily reared in vast numbers in captivity, with a typical generation time of two weeks or less. Most fundamental aspects of human genetics were first discovered in *Drosophila*; genetically speaking we are pretty much just souped-up fruit flies. About 75% of all genes involved in human diseases have an unambiguous counterpart in *Drosophila*, where they perform similar but generally fewer normal functions. With the astounding current technology, one can construct a fly strain of essentially any desired genetic makeup, producing a close analog to a selected human disease. Detailed experimentation on this model can then yield strong clues about what goes wrong in the disease, and how it might be fixed. Fly models are now part of the research on many chronic disorders, including, recently, mitochondrial disease. This study uses a *Drosophila* model to address a fundamental mystery in mitochondrial medicine, the extreme variability of symptoms among patients with ostensibly the same disease. The paper centers on Complex I deficiency, the most common childhood mitochondrial disease broadly defined, which takes on many forms including Leigh’s syndrome. The authors focus in particular on defects in one component of Complex 1 that is often involved in disease, namely the nuclear gene NDUFS1. Pathogenic NDUFS1 mutations typically result in severe leukoencephalopathy (degeneration of white matter in the brain) and death by the age of two, but some children with NDUFS1 complex I deficiency have much milder symptoms. To model the reasons for this difference, the authors constructed two contrasting fly strains, using a gene repression technique called RNAi, one with severe, the other with mild, NDUSFS1 deficiency. These strains were compared on a long list of potential types of dysfunctions, all of which have counterparts in human Complex 1 disease symptoms. The differences turned out to correspond closely, at the genetic and functional levels, to those between severe and mild cases in humans. The human-medical realism of the fly model is thus validated in this initial study. Therefore, the authors can now confidently go on to use it in probing the probable causes and potential solutions for the drastic symptoms of the typical, severe form of human NDUSFS1 deficiency. **Categories:** Mitochondrial Disease News --- ### [Energy shortage is not always the  main problem in mitochondrial disease: New insight from the first proven inherited mitochondrial disorder](https://www.mitoaction.org/energy-shortage-is-not-always-the-main-problem-in-mitochondrial-disease-new-insight-from-the-first-proven-inherited-mitochondrial-disorder/) **Published:** February 4, 2024 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This paper is a brilliant advance in our scientific understanding of mitochondrial disease, though it does not lead immediately to a treatment. [https://www.pnas.org/doi/10.1073/pnas.2304884120](https://www.pnas.org/doi/10.1073/pnas.2304884120 "Coenzyme Q10 trapping in mitochondrial complex I underlies Leber’s hereditary optic neuropathy") Leber hereditary optic neuropathy (LHON) is one of the most common mitochondrial diseases. It typically presents with swift vision loss due to degeneration of the optic nerve. It occurs 3x as often in males as in females. In males there is a median age and sharp peak of onset at 20 years. In females, the median onset age is 30, with no clear peak at any age. In 1988, LHON became the first disease proven to be caused by a mutation in a mitochondrial gene, a landmark event in mitochondrial medicine. (It seems fitting that the editor for this study was the senior author of that initial breakthrough.) Until now, however, in LHON as in nearly all mitochondrial disorders, we have not known the mechanism by which pathogenic mutations lead to dysfunction and disease. Three mutations account for about 90% of LHON cases. All three are in the mitochondrial DNA, and hinder the function of complex I in the respiratory chain, leading to selective degeneration of retinal ganglion cells. This paper addresses the question of exactly how these mutations cause dysfunction of Complex I. It focuses on the most harmful of the three, the m.3460 G>A mutation, which causes a change from alanine to threonine at amino acid position 52 in the MT-ND1 protein. In Complex I, Coenzyme Q slides into a channel within the ND1 protein, receives two electrons from NADH, then exits the channel to carry these electrons to Complex III. The amino acid at position 52 is part of the channel wall. A threonine at that position, unlike the normal alanine, projects side chains into the channel, slowing the exit of Coenzyme Q and hence the rate of ATP production. In addition, the delayed exit gives the electrons carried by Coenzyme Q an increased chance of escaping to some place they shouldn’t. For example, an electron could wind up associating instead with an oxygen molecule, creating an unstable form of oxygen that the cell quickly converts to hydrogen peroxide, H2O2. H2O2 is one of the so-called reactive oxygen species (ROS), that can easily damage cells and their components including DNA, and proteins, and mitochondria. If this happens in nerve cells of the retina, those cells can die, leading to blindness. LHON mutations can thus both lower ATP production and increase cell death from reactive oxygen species. It turns out that the effect on energy production is modest and probably not that important. It is instead the damage caused by increased reactive oxygen species that contributes most to the disease symptoms. It is increasingly clear that energy shortage is not always the biggest problem in mitochondrial disease. We can think of oxidative phosphorylation as somewhat analogous to nuclear power: the energy gain does not always outweigh the toxic by-products. Why might these findings matter? They have no obvious immediate clinical relevance. But in the future, hypothetically at least, if one were trying to find a way to slow the disease progression, it might be more important to focus on reducing ROS (e.g., with anti-oxidants) than on compensating for reduced ATP production. This might not matter in the end; for example, gene therapy for LHON, now under development, might make the whole problem go away. But you never know what is actually going to work, so every potential approach is worth exploring in the meantime. Turning up new possibilities and understanding, as this paper does, is part of the arduous process of searching for cures of rare diseases. **Categories:** Mitochondrial Disease News --- ### [The Multiple Roles of Mitochondria in Disease - A Synopsis](https://www.mitoaction.org/the-multiple-roles-of-mitochondria-in-disease-a-synopsis/) **Published:** January 31, 2024 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Today I ran across what I thought was an especially clear and concise overview of the several ways in which mitochondria contribute to disease, extracted from the web site of the MRC Mitochondrial Biology Unit at the University of Cambridge. I felt it was worth sharing. “Mitochondria are central to how our cells work and contribute in all sorts of ways to our well-being. In addition to their main role in making the energy stored in food available to power our bodies, mitochondria are also central to how cells are put together and die, how they respond to infections and injury, and in the changes that lead to cancer and ageing. Consequently, damage or disruption to mitochondria underlies many human pathologies and diseases. These range from genetic disorders that affect how mitochondria are made, to acute injuries such as heart attack and stroke, chronic conditions such as obesity and diabetes, to neurodegenerative disorders such as Parkinson’s and Alzheimer’s disease. Therefore a better understanding of how mitochondria work and why they stop working well in disease is vital so we can develop new treatments for many diseases…” **How mitochondrial damage contributes to human diseases** “The mitochondrial damage that causes disease can be divided into two broad categories, primary or secondary damage. The primary category is due to genetic defects in the DNA within mitochondria (mitochondrial DNA) or to a defect in a gene in the cell nucleus that is important for mitochondrial function. These genetic defects mean that mitochondria are incorrectly assembled or do not work properly. Often these “mitochondrial diseases” show up in babies or young children, and affect the brain, heart or other essential organs that use a lot of energy. However, there are many other forms of mitochondrial disease that show up in adults, for example leading to blindness, diabetes and fatigue.” “The other type of mitochondrial disorder, secondary mitochondrial dysfunction, is caused by damaging events during the patient’s lifetime. For example, in a heart attack, the damage is started by a blockage in a blood vessel in the heart, but this kills cells of the heart by disrupting their mitochondria. Similarly, there is a wide range of other disorders in which mitochondrial damage plays a significant role, including sepsis, neurodegenerative diseases, obesity, organ transplantation, cancer, autoimmune diseases, ageing and diabetes. Therefore mitochondrial damage is central to many of the most serious disorders facing our ageing population…” **Therapies for mitochondria** “As mitochondria are central to so many important diseases they are an important target for new therapies and drugs. Surprisingly, mitochondria have long been neglected by the pharmaceutical industry and overcoming this oversight is a key goal of the MBU. Some of the ways we are investigating are to address the genetic defects causing primary mitochondrial diseases by developing gene therapies that replace the defective gene in the nucleus. A related approach is to treat the disease by replacing, repairing or “switching off” the damaged gene inside the mitochondria. Complementary approaches are to try and develop drugs that prevent the damage associated with mitochondrial diseases. For example, the MBU is developing drugs that are designed to go to mitochondria in patients in order to block the damage caused by a heart attack or stroke…” Source: . \[I have corrected several typos in the original.\] **Categories:** Mitochondrial Disease News --- ### [On Curing Genetic Diseases by Genome Editing – Eric Topol interviews Fyodor Urnov](https://www.mitoaction.org/on-curing-genetic-diseases-by-genome-editing-eric-topol-interviews-fyodor-urnov/) **Published:** February 5, 2024 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [https://erictopol.substack.com/p/on-genome-editing-with-fyodor-urnov?utm\_campaign=email-half-post&r=3we41&utm\_source=substack&utm\_medium=email#details](https://erictopol.substack.com/p/on-genome-editing-with-fyodor-urnov?utm_campaign=email-half-post&r=3we41&utm_source=substack&utm_medium=email#details) Fyodor Urnov has been a pioneer and leader in genome editing, a term he invented, since that field began. He is a U.C. Berkeley colleague of Jennifer Doudna, who along with French scientist Emmanuele Charpentier won the 2020 Nobel Prize in Chemistry for their invention of CRISPR. Urnov’s pioneering work paved the way for that breakthrough. This is an exciting, even emotionally exhausting interview. Urnov provides a dazzling overview of the astonishing recent progress in genome editing and its applications in medicine, some of which his lab is pursuing. He is bursting with enthusiasm and optimism about its near-term prospects for helping rare disease patients. This approach provides perhaps the strongest ray of hope yet, for improving the lives of mito patients for whom no treatment currently exists. Video and transcript are both provided. **Categories:** Mitochondrial Disease News --- ### [A novel, brutally clever approach to ameliorating mitochondrial disease](https://www.mitoaction.org/a-novel-general-therapeutic-approach-for-ameliorating-mitochondrial-disease/) **Published:** February 5, 2024 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Every now and then there appears a truly novel proposal for alleviating the misery of mitochondrial disease. In this paper an international team presents such an idea. It’s a bit technical but worth looking into. (I.e., it is so geeky and cool!). It is a good example of why basic research on mitochondrial function is so important in the search for treatment. The crowning step in oxidative phosphorylation takes place in mitochondrial Complex V (five), also known as ATP synthase, where ADP is combined with inorganic phosphate (Pi) to yield ATP. It has long been known, however, that the reaction at Complex V can go either direction, depending on the conditions. That is, under some circumstances, the ATP synthase can equally easily break down ATP into ADP plus phosphate, instead of the reverse, **reducing** the amount of chemical energy made available for cellular activities. This loss of potential ATP production is turning out to be more important than previously realized. And, the negative effect is greater, the less effective the previous steps in ATP generation, for example, when harmful mutations disrupt the workings of the electron transport chain. Slower production of ATP leads to greater losses of the ATP that is produced, potentially a vicious circle. The authors looked for and found a compound that blocks operation of the ATPase in the wrong direction. This is sort of like fixing a leak in the ATP “delivery pipeline.” It increases the total ATP yield from oxidative phosphorylation, counteracting to a degree the harm from mitochondrial dysfunction, no matter where in the process the defect lies. Although it is not a cure, it could potentially help alleviate the harm from almost any type of disorder in oxidative phosphorylation, by making maximal use of the ATP that does get produced. Experiments of several kinds show measurable benefits in model organisms. The reversal-blocking compound is a flavonoid readily available from plants, already in use as a dietary supplement. I am providing links to both the original paper, and an editorial that explains its importance. **Categories:** Mitochondrial Disease News --- ### [Non-monogenic inheritance of mitochondrial disease: a case of atypical Leigh syndrome caused by three apparently pathogenic variants, each in the heterozygous state](https://www.mitoaction.org/non-monogenic-inheritance-of-mitochondrial-disease-a-case-of-atypical-leigh-syndrome-caused-by-three-apparently-pathogenic-variants-each-in-the-heterozygous-state/) **Published:** February 6, 2024 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The application of DNA sequencing has led to tremendous progress in our understanding and diagnosis of mitochondrial disease, with mutations in hundreds of genes now established as causes. However, the now-standard screening of hundreds of candidate genes one at a time yields a genetic diagnosis less than half the time. For the sake of the majority of mitochondrial disease patients, who suffer both from persistent medical uncertainty and from denial of care available to those with genetic diagnoses, we urgently need to figure out why. This study adds to the growing evidence that the single-gene paradigm of mitochondrial disease fails for many patients, and that more complex modes of inheritance will help to explain that shortfall. This subject in this study is an extremely disabled six-year-old boy. The admirably exhaustive analysis of his illness revealed, among other things, pathogenic mutations in three separate genes. Each gene was previously known to harbor other pathogenic variants in other Leigh’s patients, and was thus a likely suspect a priori. In each instance, the mutant was paired with a normal variant. This is a bit surprising, as the inheritance of Leigh syndrome is most often autosomal recessive. It seems likely, though not conclusively proven here, that disease in this case is a cumulative effect of multiple mutations, each only mildly deleterious, such that no one of these heterozygotes by itself could have caused the observed symptoms. As the authors summarize, “Recently, oligogenic inheritance of heterozygous variants has increasingly been recognized as a pathogenic mechanism underlying complex phenotypes of metabolic myopathies and mitochondrial neurodegenerative diseases with a deficit in energy metabolism…Thus, our study extends the traditional approach of a single-gene disorder linked to mitochondrial inborn errors of metabolism diseases with the concept of multiple heterozygous variants mapping in genes known to cause monogenic metabolic disorders.” **Categories:** Mitochondrial Disease News --- ### [Stand Up For Family Rights](https://www.mitoaction.org/stand-up-for-family-rights/) **Published:** August 11, 2022 **Author:** Sarah Harty **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **MitoAction’s Response to the Pelletier Case** **ad·vo·ca·cy:** The act of pleading or arguing in favor of something, such as a cause, idea, or policy; active support. **Justina Pelletier goes home!** **MitoAction’s statement** After a 16-month ordeal, Justina Pelletier is finally going home. On behalf of everyone at MitoAction and the mitochondrial disease community we represent, we hope that Justina’s transition back to her family is smooth and that she will gain strength in the comfort of her own home. Mitochondrial disease is a complex disorder caused by a cellular defect which impairs the body’s ability to generate energy necessary for proper organ function. This case not only has taken its toll on the Pelletier family but also has had a significant impact on the mitochondrial disease and rare disease community. Our community’s faith in the medical and legal systems has been shaken to the core. Families are afraid to seek emergency medical care for their children for fear of having them taken away. Parents are being questioned more than ever about their children’s diagnoses and treatment plans. The accusation of medical child abuse is being used liberally based on individual interpretations of a child’s diagnosis, a family’s actions, and the history of medical treatment and intervention. As a result, parents are being held accountable for every decision in their child’s care, even when there is lack of consensus between healthcare providers. The Pelletier situation also has exposed rifts within the medical community over the scope of mitochondrial disease, polarizing physicians between those who restrict mitochondrial disease to a small subset of genetic or other well-described disorders and those who treat symptomatic patients clinically even if a faulty gene cannot be found. Allowing such disagreements to enter into the hospital acute care setting represents a huge step backwards for patients and families, many of whom already have undergone a diagnostic odyssey with their doctors. If only one change were to come from the Pelletier family’s ordeal, recognition of the value of the patient and family as part of an integrated care model due to the nature of the disorder would be a significant process improvement. MitoAction is addressing these concerns through its recently created Advocacy Task Force and medical education outreach initiatives, which seek to prevent and defend against unwarranted accusations of medical child abuse, and to improve fundamental understanding of day-to-day patient care approaches amongst healthcare providers. By initiating a community response to the Pelletier case, MitoAction hopes to spark a nationwide dialogue on alleged overmedicalization and proactively improve the circumstances for mitochondrial disease families going forward. ![](http://www.mitoawareness.org/files/Pillars-graphic.jpg) **Will you help MitoAction provide legal advocacy to these families in need? Help us to be strong as the voice of the Mito community.** Have you feared having your child with Mito taken from you due to clinical disagreement, institutional policy, and a gross lack of knowledge about mitochondrial disease? While this is an extreme case, it is certainly — and sadly — NOT a new situation. Sometimes the diagnosis of mitochondrial disease and its symptoms are hard to understand. Sometimes there is a lot of confusion, especially when symptoms come and go without rhyme or reason. Sometimes (all the time) parents are stressed, families are overextended, and moms and dads are expected to advocate on multiple levels. MitoAction’s family-centered resources provide the safety net and support so critical to patients, their families, and the community supporting them. MitoAction’s mission is to reach both the families who are suffering and to improve patient care by educating physicians and supporting new treatments for the disease. “This situation is an example of something that has happened frequently in a horrifying amount of numbers in past five years,” Cristy said in the article, “Hospital Holding Teen Against Parents’ Will Accused of Having a History of Doing it Before.” “More children are being diagnosed with mitochondrial disease. There’s a lack of understanding about the disease and it becomes a situation especially in academic hospitals … with many people involved in the decision making process. The erratic nature of symptoms causes a great deal of confusion among hospitals.” Will you help MitoAction provide legal advocacy to these families in need? Help us to be strong as the voice of the Mito community. ## Timeline ![](http://www.mitoawareness.org/files/chronicle%20logo.jpg) ### JUNE 17, 2014: Cristy Baclcells appears on Chronicle. [Justina’s Story: A Fateful Day in February](http://www.wcvb.com/chronicle/justinas-story-a-fateful-day-in-february/26547546) [Justina’s Story: What is Mitochondrial Disease?](http://www.wcvb.com/chronicle/justinas-story-what-is-mitochondrial-disease/26539804) [Justina’s Story: Another Family’s Fight](http://www.wcvb.com/chronicle/justinas-story-another-familys-fight/26540588) [Justina’s Story: Going Home](http://www.wcvb.com/chronicle/justinas-story-going-home/26540560) ![](http://www.mitoawareness.org/files/graham.png) MARCH 26, 2014: Cristy Balcells appears on the Michael Graham Radio Show, Reaction To Ruling In “Free Justina” Case. Download The Audio Here (4.51 MB). ![](http://www.mitoawareness.org/files/graham.png) MARCH 26, 2104: Christine Cox appears on the Michael Graham Radio Show, Reaction To Ruling In “Free Justina” Case. Download The Audio Here (3.22 MB) MARCH 20, 2014: MitoAction’s letter to Judge Johnston ![](http://www.mitoawareness.org/files/Kuhner%20Report.png) FEB. 25, 2014: Cristy talks on the Kuhner Report on WRKO. ![](http://www.mitoawareness.org/files/graham.png) FEB. 24, 2014: MitoAction Executive Director Cristy Balcells on the Michael Graham Radio Show: “Free Justina” Case Comes to a Boston Courtroom ![](http://www.mitoawareness.org/files/Gordon-Media_0.jpg) FEB. 24, 2014: Board member Gordon Russell on WCVB report: Battle over Medical Care for Ailing Teen Takes Major Turn ![](http://www.mitoawareness.org/files/no-org-mitoaction.jpg) FEB. 24, 2014: MitoAction’s statement after judge ruled Justina Pelletier would be sent to foster care. ![](http://www.mitoawareness.org/files/HuffPost.png) FEB. 23, 2014: On Huffington Post, Cristy writes “First, Do No Harm: How We Failed Justina Pelletier and Her Family ![](http://www.mitoawareness.org/files/Gordon-Petra.jpg) JAN 13, 2014: Gordon Russell on the Petra Destinee Program, “Justina Pelletier: Mitochondrial Disease Does Exist ![](http://www.mitoawareness.org/files/WBUR.jpeg) JAN. 10, 2014: Cristy featured on WBUR: Teen in State Custody after Boston Hospital Accuses Parents of Medical Child Abuse ![](http://www.mitoawareness.org/files/boston-globe-logo1.jpg) JAN. 7, 2014: Cristy writes an op-ed piece for the Boston Globe called “Understanding mito.” (Click here for a pdf version.) ![](http://www.mitoawareness.org/files/no-org-mitoaction_2.jpg) DEC. 15, 2013: MitoAction’s Leadership Creed for Mitochondrial Disease ![](http://www.mitoawareness.org/files/theblaze_logo_2x.png) DEC. 4, 2013: Read Cristy’s essay: A Broken System Lets the Chronically Ill Slip Through the Medical Maze Cracks ![](http://www.mitoawareness.org/files/foxct-fixed2.png) NOV. 26, 2013: Update on FoxCT: Girl Held at Boston Children’s Hospital, Parents Fight for Custody ![](http://www.mitoawareness.org/files/theblaze_logo_2x.png) NOV 25, 2013: Hospital Holding Teen Against Parents’ Will Accused of Having a History of Doing it Before ![](http://www.mitoawareness.org/files/theblaze_logo_2x.png) NOV. 25, 2013: Cristy appeared on the Glenn Beck Show to impart her knowledge and be the voice for mitochondrial disease patients. More than ever before, families of children with mitochondrial disease are being questioned or accused of “making up the diagnosis” or “overmedicalizing the child’s care.” Over the past 12 months, MitoAction has extensively interviewed a number of families across the country who have faced this horrifying plight. In the majority of cases, the parents have exhausted their life savings, mortgaged their homes, hired advocates and lawyers, and fought the system they trusted to gain back their rights as a parent. During this period of time, we heard from parents that they watched helplessly from afar while their child’s health declined even further, despite the intention by the hospital or child protective services to “prove” that the parents were responsible for the child’s complex medical issues. Mitochondrial disease is characterized by a conglomeration of symptoms that affect multiple organ systems and which present in an erratic fashion. It makes the disease difficult to describe, difficult to diagnose, and difficult to treat. However, it does not make it appropriate to traumatize a child and a family because it is misunderstood and because precise diagnosis is not always possible. MitoAction’s goal is to make an impact on this terrifying trend by educating primary healthcare providers, non-Mito specialists, and medical residents about the complexity of mitochondrial disease. We also intend to design a retrospective study to examine the similarities in symptoms and circumstances among these patients and publish an academic paper with our findings in an effort to demonstrate the threat of death and decline when these children are removed from their family and treated inappropriately – all due to misperceptions and ignorance about mitochondrial disease. Our vision is to dramatically improve awareness of mitochondrial disease as well as empower affected individuals and families. You can help us by coming forward if you or your family has been involved in a case like this. If you have been accused of medical child abuse, Munchausen by proxy, somatization disorder, or fabrication of symptoms related to misinterpretation of a child’s symptoms, let us know. We respect your right to privacy and will keep your information confidential. Your feedback can help us determine ways we can help to both assist families and to educate the medical community. Please contact us via email at [info@mitoaction.org](info@mitoaction.org). Munchausen by Proxy Accusations in Children with Mitochondrial Disease: Dr. Alex Flores from Tufts Floating Hospital for Children presented Munchausen by Proxy Accusations in Children with Mitochondrial Disease in 2009 in response to the increasing number of accusations of child abuse and Munchausen by proxy that have been placed upon many parents of children struggling from the devastating symptoms of mitochondrial disease. Listen to the podcast here: Advocating Responsibly and Communicating Effectively: [ https://www.mitoaction.org/blog/advocating-responsibly-and-communicating-effectively.](https://www.mitoaction.org/blog/advocating-responsibly-and-communicating-effectively.) Mannie Taimuty-Loomis, BS OD, MAHED and Executive Director of the Jonah & The Whale Foundation, Inc. presented this topic in 2012. During a time when families with children with mitochondrial disease may face accusations of medical child abuse or Munchausen’s by proxy, it is incredibly important to advocate responsibly and communicate effectively. To listen to the podcast: Other helpful links: Becoming a Great Advocate: Advice for Parents & Adult Patients with Complex Needs Coordinating Care for Mito Patients: An impossible dream? **Categories:** Uncategorized --- ### [Caroline Payne](https://www.mitoaction.org/caroline-payne/) **Published:** September 6, 2019 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > *Though she be but little, she is fierce* Caroline Hope Payne was born 8 weeks premature in 2010, weighing only 2 lbs., 4 oz., resulting in a 47 day stay in the NICU. She is a twin and during pregnancy we discovered she had slow Doppler flow, poor growth, and a hole in her heart. The doctors told us that she would not make it, while her sister was thriving. Two days before the twins were born, the sonogram showed that she had reverse Doppler flow, which caused an immediate admission to the hospital. Regardless, Caroline came out shaking a fist and making the doctors laugh! In her newborn and toddler years, she missed all the typical milestones and wasn’t gaining weight. At 8 months old, she started physical, occupational, and speech therapy. When Caroline was around 3 years old, I noticed a story on Facebook about a girl with mitochondrial disease that had many of the same symptoms that Caroline seemed to have. I asked the pediatrician about mitochondrial disease and she said it wasn’t something we needed to worry about. Caroline had a brain MRI at 3 years old which came back showing no issues. But, then in January 2016, when Caroline was 5, a new MRI showed a “significant enlargement” in her brain that was diagnosed quickly as “probably a brain tumor.” This was cause for more testing and of course, more panic. Over a period of 3 days, we met with neurologists, oncologists, radiologists and a pediatric neuro surgeon. More and more doctors weighed in and determined that maybe it wasn’t a tumor after all. Our neurologist ordered a series of tests and diagnosed her with a probable metabolic or genetic condition. After another EEG, MRI, and multiple other tests, we were referred to the Center for Development, Behavior, and Genetics at Upstate University Hospital in February 2016 for an evaluation of a possible mitochondrial disorder. **On March 17, 2016, Caroline was officially diagnosed with mitochondrial disease with 2 mutations (ND-1 and ATP-8), as well as Leber’s Hereditary Optic Neuropathy.** Caroline is now 8 and a half years old and the smallest of 4 girls in our family. However, she likes to point out that she is 1 minute older than her twin sister! She makes friends and impressions everywhere we go. At school, she is often called “The Mayor.” She still receives physical and occupational therapy and deals with a heart condition and poor vision. She tires easily, but she doesn’t let that stop her from living life fiercely! She loves to read and watch cooking shows and is a cheerleader on a special needs cheer team at an all-star gym. She continues to meet milestones, but on her own timeline. “*Though she be but little*” – she is a fighter and continues to persevere! “*Tiny Liney*” as her family often calls her, continues to remind them that now matter her size, she is BIG and so is the impact she continues to make on everyone she meets! **Categories:** Patient Spotlight --- ### [Lillian DeJean](https://www.mitoaction.org/lillian-dejean/) **Published:** September 6, 2019 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Lillian DeJean was six years old when she was diagnosed with Mitochondrial Disease. Prior to the official diagnosis, however, she had an underlying, overwhelming feeling that something was wrong. Given the odd symptoms she had growing up; it was evident there was something more going on beneath the surface. Being diagnosed at such a young age was tough for Lillian. “*Not only did I not know what was going on but I didn’t want to know and I didn’t want to share it*,” Lillian said. Now 10 years since she was initially diagnosed, Lillian is a teen advocate for people with disabilities. Lillian and her family live in Louisiana, a state that has been in a budget crisis for years now. In Louisiana’s constitution, the only two areas that are financially unprotected are healthcare and education. When Lillian was 13 years old, the state decided to cut medical waivers, which for her and her family, provide Medicaid insurance and hours of help from the support worker. These services allow her family to stay afloat and covers some of the medical bills that their private insurance refuses to. In 2016, Families Helping Families, an organization dedicated to serving the disability community in all facets of life suggested that Lillian testify in front of the Ways and Means Committee and share her story in hopes of stopping the budget cuts. Lillian’s advocacy did not stop there. In the summer of 2017, Lillian, along with many other disability advocates from Louisiana traveled to Washington DC to try to stop Medicaid from being cut across the country. Although they were denied meetings with all of the points of contact they planned on meeting with, CNN documented their whole trip, launching their message of advocacy across the nation. Lillian then became the first minor to hold a position on a state council, which brings her to today. When asked what she thinks other teens can do to become advocates for the Mito community, Lillian stated “*I think a lot of people view their senators and representatives as removed from the general population, which really isn’t true. Their contact information is typically out; it has to be. So just giving them a call, sending them an email, or even meeting with them face to face is possible. They’re not as unreachable as we think. Even though you may not be allowed to vote right now, you can still talk about it to adults who can vote*.” Lillian is a force to be reckon with, and hasn’t let her disease darken her positive outlook on life. “*The fact of the matter is I have Mito, there’s no treatment, there’s no cure, but I have a really good team of doctors, and I’m here. It’s just life*.” When asked what advice she has for new Mito patients, Lillian said “*definitely take the time you need to mourn and be private about it. Let yourself process it. But, you can’t let it over take your life. There’s no reason for that*.” It took a long time for Lillian to open up about her illness, as many other teens with Mito experience as well. It’s normal to want to hide when you don’t feel as normal as everyone around you, but she encourages other teens to open up now. “*It’s up to us to normalize it because no one else really knows how to. If we don’t normalize this disease, who will?*” **Categories:** Patient Spotlight --- ### [Exenatide Therapy Increases Key Frataxin Protein Levels, Study Finds](https://www.mitoaction.org/exenatide-therapy-increases-key-frataxin-protein-levels-study-finds-2/) **Published:** March 6, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > PERTINENT TO FRIEDRICH’S ATAXIA: Exenatide, a drug that mimics the effects of the gut hormone GLP-1, increased the levels of frataxin — a protein involved in iron metabolism, whose deficiency leads to Friedreich’s ataxia (FA) — in a mouse model of the disease, a new study shows. Treatment with exanatide also improved the \[…\] [Click here to view original web page at friedreichsataxianews.com](https://friedreichsataxianews.com/2020/03/05/fa-exenatide-treatment-increases-key-frataxin-levels-improves-mitochondria-function-study-reports/) **Categories:** Mitochondrial Disease News --- ### [New Mitochondrial Gene Mutation Speeds GRACILE Progression, Study Shows](https://www.mitoaction.org/new-mitochondrial-gene-mutation-speeds-gracile-progression-study-shows/) **Published:** March 8, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > A new spontaneous mutation in the MT-CYB gene — which provides instructions for making a protein called cytochrome b that plays a key role in mitochondria — was found to accelerate the progression of GRACILE syndrome , a rare mitochondrial disease , a study in mice showed. This finding \[…\] [Click here to view original web page at mitochondrialdiseasenews.com](https://mitochondrialdiseasenews.com/2020/03/06/new-mitochondrial-gene-mutation-speeds-gracile-syndrome-progression-study-shows/) **Categories:** Mitochondrial Disease News --- ### [Mayo Clinic researchers clarify how cells defend themselves from viruses](https://www.mitoaction.org/mayo-clinic-researchers-clarify-how-cells-defend-themselves-from-viruses-2/) **Published:** March 8, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > MITOCHONDRIA PLAY A KEY ROLE: Newswise — ROCHESTER, Minn. — A protein known to help cells defend against infection also regulates the form and function of mitochondria, according to a new paper in Nature Communications . The protein, one of a group called myxovirus-resistance (Mx) proteins, help cells fight infections without the use of \[…\] [Click here to view original web page at www.newswise.com](https://www.newswise.com/articles/mayo-clinic-researchers-clarify-how-cells-defend-themselves-from-viruses) **Categories:** Mitochondrial Disease News --- ### [Boosting Damaged Nerves' Energy Levels Could Help Them Heal](https://www.mitoaction.org/boosting-damaged-nerves-energy-levels-could-help-them-heal/) **Published:** March 8, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > MITOCHONDRIA HIGHLIGHTED: Credit: iStock When the spinal cord is injured, the damaged nerve fibers—called axons—are normally incapable of regrowth, leading to permanent loss of function. Considerable research has been done to find ways to promote the regeneration of axons following injury. Results of a study performed in mice suggest that increasing \[…\] [Click here to view original web page at www.technologynetworks.com](https://www.technologynetworks.com/neuroscience/news/boosting-damaged-nerves-energy-levels-could-help-them-heal-331625) **Categories:** Mitochondrial Disease News --- ### [In vivo bioimaging to elucidate sex-dependent differences in skeletal muscle function](https://www.mitoaction.org/in-vivo-bioimaging-to-elucidate-sex-dependent-differences-in-skeletal-muscle-function/) **Published:** March 11, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > NEW KNOWLEDGE WITH POTENTIAL FOR MITOCHONDRIAL DYSFUNCTION THERAPY: Left: Sex-dependent difference in ultrastructure of intermyofibrillar mitochondria. Right: Effects of Ca2+ uptake inhibition of sarcoplasmic reticulum (SR). The red color area has high Ca2+ concentration (Male). Green color indicates low Ca2+ area (Female). These images show the difference in mitochondrial Ca2+ buffering capacity. Credit: University of Electro Communications \[…\] [Click here to view original web page at phys.org](https://phys.org/news/2020-03-vivo-bioimaging-elucidate-sex-dependent-differences.html) **Categories:** Mitochondrial Disease News --- ### [Antioxidant derived from mushrooms may be beneficial in treating preeclampsia](https://www.mitoaction.org/antioxidant-derived-from-mushrooms-may-be-beneficial-in-treating-preeclampsia/) **Published:** March 1, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > SEARCH FOR ANSWERS FOR PREECLAMPSIA, MITOCHONDRIAL COMPONENT TO THE PUZZLE: Antioxidant derived from mushrooms beneficial in treating preeclampsia A recent study in rats reports that an antioxidant present in mushrooms can relieve some symptoms of preeclampsia or pregnancy-related high blood pressure. Preeclampsia is a common complication in pregnancies where the mother’s blood pressure increases above 140mm Hg/90 mm Hg \[…\] [Click here to view original web page at medicalnewsbulletin.com](https://medicalnewsbulletin.com/antioxidant-derived-from-mushrooms-beneficial-in-treating-preeclampsia/) **Categories:** Mitochondrial Disease News --- ### [X-ray microscopy at BESSY II: Nanoparticles can change cells](https://www.mitoaction.org/x-ray-microscopy-at-bessy-ii-nanoparticles-can-change-cells/) **Published:** March 5, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > CHANGES TO MITOCHONDRIA: IMAGE: 3D architecture of the cell with different organelles: mitochondria (green), lysosomes (purple), multivesicular bodies (red), endoplasmic reticulum (cream). view more Credit: Burcu Kepsutlu/HZB Today, nanoparticles are not only in cosmetic products, but everywhere, in the air, in water, in the soil and in food. Because they are so \[…\] [Click here to view original web page at eurekalert.org](https://eurekalert.org/pub_releases/2020-02/hbfm-xma021220.php) **Categories:** Mitochondrial Disease News --- ### [Precision medicine treatments for Parkinson's disease closer to reality](https://www.mitoaction.org/precision-medicine-treatments-for-parkinsons-disease-closer-to-reality/) **Published:** March 5, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > MITOCHONDRIAL DYSFUNCTION DESCRIBED IN ALZHEIMER’S: Immunohistochemistry for alpha-synuclein showing positive staining (brown) of an intraneural Lewy-body in the Substantia nigra in Parkinson’s disease. Credit: Wikipedia A huge step forward has been made in understanding the multiple ways Parkinson’s Disease can develop; the findings of which could be a crucial catalyst to discover new personalized \[…\] [Click here to view original web page at medicalxpress.com](https://medicalxpress.com/news/2020-03-precision-medicine-treatments-parkinson-disease.html) **Categories:** Mitochondrial Disease News --- ### [Mass General researchers find clue in attempt to understand autism](https://www.mitoaction.org/mass-general-researchers-find-clue-in-attempt-to-understand-autism/) **Published:** February 22, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > AUTISM STUDY: BOSTON, MA. – SEPTEMBER 20: Mass. General Hospital , September 20, 2018 in Boston, Massachusetts. (Staff Photo By Stuart Cahill/Boston Herald) The brains of young men with autism have surprisingly low levels of a key protein that plays a role in inflammation and metabolism, researchers at Massachusetts General Hospital \[…\] [Click here to view original web page at www.bostonherald.com](https://www.bostonherald.com/2020/02/21/massgen-researchers-discover-men-with-autism-have-surprising-levels-of-key-brain-proteins/) **Categories:** Mitochondrial Disease News --- ### [Transporter mutation alters cell energy](https://www.mitoaction.org/transporter-mutation-alters-cell-energy/) **Published:** February 22, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > NEWS IN THE STUDY OF MITOCHONDRIAL RESPIRATION: Credit: CC0 Public Domain The cotransporter NKCC1 moves sodium, potassium and chloride ions across the cell membrane and has roles regulating cell volume, epithelial transport and neuronal excitability. Eric Delpire, Ph.D., and colleagues recently discovered that a patient suffering from multiorgan failure had a mutation in the gene encoding \[…\] [Click here to view original web page at phys.org](https://phys.org/news/2020-02-mutation-cell-energy.html) **Categories:** Mitochondrial Disease News --- ### [Inner membrane of Mitochondria changes structure every few seconds, finds study](https://www.mitoaction.org/inner-membrane-of-mitochondria-changes-structure-every-few-seconds-finds-study/) **Published:** February 25, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Representative Image Washington D.C. \[USA\], Feb 22 (ANI): A group of researchers has discovered that the inner membrane of mitochondria – the powerhouse of all living cells – is constantly moving rather than being static as it continuously changes its structure every few seconds. This dynamic adaptation process further \[…\] [Click here to view original web page at www.aninews.in](https://www.aninews.in/news/health/inner-membrane-of-mitochondria-changes-structure-every-few-seconds-finds-study20200222152157/) **Categories:** Mitochondrial Disease News --- ### [Tool to Test Health of Mitochondria in Neurons May Lead to ALS Therapies, Study Reports](https://www.mitoaction.org/tool-to-test-health-of-mitochondria-in-neurons-may-lead-to-als-therapies-study-reports-2/) **Published:** February 7, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > **RESEARCH evaluating role of mitochondria and treatment of neurodegenerative diseases:** A new tool to search for medicines that might treat neurodegenerative diseases linked to problems with mitochondria, including amyotrophic lateral sclerosis (ALS), has been developed by a team of scientists at the Scripps Research Institute , a study reports. This tool can screen thousands of potential medicines by directly \[…\] [Click here to view original web page at alsnewstoday.com](https://alsnewstoday.com/2020/02/06/tool-testing-mitochondria-health-in-neurons-may-lead-to-als-therapies-study-reports/) **Categories:** Mitochondrial Disease News --- ### [Study provides new understanding of mitochondria genome, potential for new avenues of treatment for cancers](https://www.mitoaction.org/study-provides-new-understanding-of-mitochondria-genome-potential-for-new-avenues-of-treatment-for-cancers/) **Published:** February 12, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > **Study provides new understanding of mitochondria genome, potential for new avenues of treatment for cancers:** Credit: CC0 Public Domain A study led by The University of Texas MD Anderson Cancer Center furthered understanding about mitochondria, the cell components known as the “powerhouse of the cell.” Knowing more about the genome is crucial given that mitochondria play important roles in tumorigenesis. Findings were published in \[…\] [Click here to view original web page at medicalxpress.com](https://medicalxpress.com/news/2020-02-mitochondria-genome-potential-avenues-treatment.html) **Categories:** Mitochondrial Disease News --- ### [Pertaining to Friedrich's Ataxia: New Therapy SNH6 May Work for Cardiomyopathy in FA, Mouse Study Says](https://www.mitoaction.org/new-therapy-snh6-may-work-for-cardiomyopathy-in-fa-mouse-study-says/) **Published:** February 13, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > SNH6, a new dual-action therapy, has the potential to restore mitochondria function and may ultimately be used to treat cardiomyopathy in patients with Friedreich’s ataxia (FA), a mouse study found. The compound’s dual mechanism allows it to both reduce the buildup of iron and modulate levels of important mitochondrial \[…\] [Click here to view original web page at friedreichsataxianews.com](https://friedreichsataxianews.com/2020/02/13/new-therapy-snh6-may-work-for-cardiomyopathy-in-fa-mouse-study-says/) **Categories:** Mitochondrial Disease News --- ### [Unlocking how cells regulate energy production](https://www.mitoaction.org/unlocking-how-cells-regulate-energy-production/) **Published:** February 20, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > **HOW DO CELLS GET MORE ATP WHEN THEY NEED IT?** > > Researchers at the University of Maryland School of Medicine (UMSOM) identified an important regulatory mechanism by which cells control the production of ATP, a universal energy-rich chemical that enables our brains to think, our muscles to contract, and our hearts to beat. In a recent set of findings published \[…\] [Click here to view original web page at www.umaryland.edu](https://www.umaryland.edu/news/archived-news/february-2020/newspressreleaseshottopics/unlocking-how-cells-regulate-energy-production.php) **Categories:** Mitochondrial Disease News --- ### [Unexpected insights into the dynamic structure of mitochondria](https://www.mitoaction.org/unexpected-insights-into-the-dynamic-structure-of-mitochondria/) **Published:** February 21, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > As power plants and energy stores, mitochondria are essential components of almost all cells in plants, fungi and animals. Until now, it has been assumed that these functions underlie a static structure of mitochondrial membranes. Researchers at the Heinrich Heine University Düsseldorf (HHU) and the University of California Los \[…\] [Click here to view original web page at www.sciencedaily.com](https://www.sciencedaily.com/releases/2020/02/200218182156.htm) **Categories:** Mitochondrial Disease News --- ### [Yale researchers help restore hormonal balance disrupted in metabolic diseases](https://www.mitoaction.org/yale-researchers-help-restore-hormonal-balance-disrupted-in-metabolic-diseases/) **Published:** March 5, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > MITOCHONDRIA, PROTEIN AND CALCIUM SIGNALING: Super-resolution microscopy of liver cells shows the close association between (green) mitochondria, the cells energy-producing factory, and (red) endoplasmic reticulum, which helps shape proteins. A new Yale study shows how a specific protein helps regulate activity of mitochondria and influence metabolism. (Image credit: Allison Brill and Dr. Barbara Ehrlich) \[…\] [Click here to view original web page at news.yale.edu](https://news.yale.edu/2020/03/04/researchers-help-restore-hormonal-balance-disrupted-metabolic-diseases) **Categories:** Mitochondrial Disease News --- ### [Mitochondrial distress call moves to the cytosol to trigger a response to stress](https://www.mitoaction.org/mitochondrial-distress-call-moves-to-the-cytosol-to-trigger-a-response-to-stress/) **Published:** March 11, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Read the paper: A pathway coordinated by DELE1 relays mitochondrial stress to the cytosol Studies of the nematode worm indicate that coordination between the nucleus and mitochondria during stress is regulated by a combination of remodelling of chromatin (the complex of DNA and protein in the nucleus) and activity \[…\] [Click here to view original web page at www.nature.com](https://www.nature.com/articles/d41586-020-00552-0) **Categories:** Mitochondrial Disease News --- ### [Sandra's Story](https://www.mitoaction.org/sandras-story/) **Published:** October 22, 2019 **Author:** Sarah Harty **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Sandra Russell is a mother of two boys, ages 22 and 18. It’s no wonder she’s tired after raising two boys, with her husband Gordon, and co-owning and running a chain of retail stores. But her fatigue was more than the norm, says Gordon. “The first noticeable symptom was her hearing loss, and she had trouble keeping up with the busy pace of our life. I became frustrated with this as I felt like I was always having to remind her of the tasks she was supposed to be doing.” That was in 2001. In October of 2004 a seizure in the midst of a hearing test led to finding abnormalities in an MRI of her brain. Sandra and Gordon were fortunate to have access to Boston hospitals and doctors and it wasn’t long after her first seizure that Sandra was diagnosed with MELAS, a progressive neurodegenerative disorder associated with Mitochondrial myopathy. This only confirmed what Gordon had suspected after his many nights of searching the internet and finding many of Sandra’s characteristics and symptoms matched with a MELAS diagnosis. This track even landed Gordon in the hospital out of exhaustion; the very thing his wife had been suffering from. Today Sandra “goes about her limited (but productive) routine with enthusiasm and commitment,” says her husband, who adds, “It is difficult on us because our boys have been thrust into the role of parenting their mother, and I have lost my partner and my spouse.” Sandra’s brain remains, “under daily attack and she has suffered significant cognitive impairment,” says Gordon. But, he adds, “the blessing here is that, Sandra does not fully appreciate or understand much of what has happened to her. She is entirely focused on what she CAN do and is not concerned at all with what she cannot do.” This new lifestyle has forced the boys to mature beyond their years while Gordon accepts the foremost challenge of keeping Sandra safe. She needs to be reminded to take her medicine, eat meals, stay properly hydrated, and get adequate rest. Getting through the next day is the future for the Russell family. Gordon says he, “grabs the joy where it can be found and focuses on the positives of the situation” while he hopes and prays that our children will remain asymptomatic.” Gordon also finds solace in the old saying that applies so well to Sandra’s condition, “you don’t know what you don’t know.” **Categories:** Patient Spotlight --- ### [Know thy mitochondria: Autoimmunity to organelles and their DNA](https://www.mitoaction.org/know-thy-mitochondria-autoimmunity-to-organelles-and-their-dna-3/) **Published:** January 6, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > VDAC1 oligomerization forms a pore for mtDNA. Credit: Jeonghan Kim et al. National Heart Lung and Blood Institute, Bethesda, MD The immune system uses its mitochondria to self-stimulate innate and adaptive responses to infection. Reactive oxygen species (ROS), immunogenic mitochondrial DNA (mtDNA), and even whole mitochondria are locally mobilized \[…\] [Click here to view original web page at medicalxpress.com](https://medicalxpress.com/news/2020-01-thy-mitochondria-autoimmunity-organelles-dna.html) **Categories:** Mitochondrial Disease News --- ### [Mitochondria are the 'canary in the coal mine' for cellular stress](https://www.mitoaction.org/mitochondria-are-the-canary-in-the-coal-mine-for-cellular-stress-2/) **Published:** January 9, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Illustration of mitochondria (stock image). Mitochondria, tiny structures present in most cells, are known for their energy-generating machinery. Now, Salk researchers have discovered a new function of mitochondria: they set off molecular alarms when cells are exposed to stress or chemicals that can damage DNA, such as chemotherapy. The \[…\] [Click here to view original web page at www.sciencedaily.com](https://www.sciencedaily.com/releases/2019/12/191214122543.htm) **Categories:** Mitochondrial Disease News --- ### [UCP2-induced hypoxia promotes lipid accumulation and tubulointerstitial fibrosis during ischemic kidney injury](https://www.mitoaction.org/ucp2-induced-hypoxia-promotes-lipid-accumulation-and-tubulointerstitial-fibrosis-during-ischemic-kidney-injury/) **Published:** January 20, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Abstract Mitochondrial dysfunction leads to loss of renal function and structure; however, the precise mechanisms by which mitochondrial function can regulate renal fibrosis remain unclear. Proximal tubular cells (PTCs) prefer fatty acid oxidation as their energy source and dysregulation of lipid metabolism has been linked to tubulointerstitial fibrosis (TIF). \[…\] [Click here to view original web page at www.nature.com](https://www.nature.com/articles/s41419-019-2219-4) **Categories:** Mitochondrial Disease News --- ### [Experimental therapy may offer hope for rare genetic disorders](https://www.mitoaction.org/experimental-therapy-may-offer-hope-for-rare-genetic-disorders/) **Published:** January 26, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > This is a very technical article about a proposed new treatment approach for mitochondrial disease. It is in very early phases of development: > > Credit: CC0 Public Domain Researchers at Massachusetts General Hospital (MGH) have developed a new way to alleviate problems caused by dysfunctional mitochondria, which are the “powerhouses” that produce energy in cells. Their discovery, reported in the journal Nature Biotechnology on January 13, could lead to a new treatment for \[…\] [Click here to view original web page at medicalxpress.com](https://medicalxpress.com/news/2020-01-experimental-therapy-rare-genetic-disorders.html) **Categories:** Mitochondrial Disease News --- ### [CRISPR gene-editing corrects muscular dystrophy in pigs](https://www.mitoaction.org/crispr-gene-editing-corrects-muscular-dystrophy-in-pigs-2/) **Published:** January 28, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Gene editing technique offering hope for Duchenne Muscular dystrophy: > > Researchers have used CRISPR to correct muscular dystrophy in pigs Duchenne muscular dystrophy (DMD) is one of the most common and most devastating muscular diseases, greatly reducing patients’ quality of life and life expectancy. Now, researchers in Germany have managed to use the CRISPR gene-editing tool to correct the \[…\] [Click here to view original web page at newatlas.com](https://newatlas.com/medical/crispr-gene-editing-muscular-dystrophy-pigs/) **Categories:** Mitochondrial Disease News --- ### [Cerrutis Craft a Way to Raise Mito Awareness](https://www.mitoaction.org/cerrutis-craft-a-way-to-raise-mito-awareness/) **Published:** October 22, 2019 **Author:** Sarah Harty **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Every year, Rita Cerruti makes more than 300 mitochondrial disease awareness ribbons to hand out at the MitoAction Energy Walk & 5K. And every year, they are gone in minutes! It’s just one way Rita, 82, a lifelong crafter, raises awareness about the disease that affects her daughter, Lisa, team captain of LC’s MitoBusters. “Making these things is my way to raise awareness,” Rita said. Both women are looking forward to the 10th annual MitoAction Energy Walk & 5K, presented by America’s Compounding Center, to be held Sunday, Sept. 14, 2014 at DCR’s Mother’s Rest in South Boston, MA. For more information and to register, please visit [www.mitoaction.org/energywalk](https://www.mitoaction.org/energywalk). “I’m looking forward to seeing the same people and the same teams,” Lisa said. “My favorite thing is meeting families and other patients and seeing the teams.” Lisa, 38, who was diagnosed with mitochondrial cytopathy with dysfunction of the electron transport chain connectors 1, 2, and 3 at age 29, has had a rough summer. She has spent about five weeks in the hospital because her whole body locks up. Lisa is hoping she’s on the upswing now and will be well enough to attend the walk. Mitochondrial disease is an inherited chronic illness that can be present at birth or develop later in life. It causes debilitating physical, developmental, and mental disabilities with symptoms including poor growth; loss of muscle coordination; muscle weakness and pain; seizures; vision and/or hearing loss; gastrointestinal issues; learning disabilities; and heart, liver, or kidney failure. About 1 in 2,000 people has Mito. It’s progressive and there is no cure. In Lisa’s case, she thinks the Mito was dormant until the Hepatitis C vaccine triggered the disease. After Round 1 of the vaccine, Lisa started experiencing headaches. Two weeks after the second dose, she couldn’t walk and the journey to a diagnosis had begun. The Cerruti family knows that raising awareness about Mito is vital. When Lisa was diagnosed in 2005, the family had never heard of Mito. After the diagnosis, Lisa’s sister, Sue Kneeskern, started researching Mito. Sue is the one who told the family about the MitoAction walk and LC’s MitoBusters was born. “It was devastating when Lisa was first diagnosed,” Rita said. “She’s still not doing that well. We do the best we can.” Rita makes the ribbons with plastic canvas and yarn and works on them everywhere. The ribbons are always a conversation starter. “People see her making them and they ask her about it,” Lisa said. “She always brings a finished ribbon to show people what she’s making.” Rita, who works in many craft mediums, including crocheting, beadwork, knitting, and needlepoint, also creates beautiful handmade Mito items that appear in the walk raffle, including afghans, sweaters, and home accessories. She is currently working on a shawl with a pocket. A Mito Man figure, created by Lisa and Sue, appears at every walk to lead the LC’s MitoBusters team. He’s a goofy, funny guy on a stick. “We bring him out for every walk,” Lisa said. The team also goes all out in the accessory department, from green hair and wigs to jewelry, feather boas, and anything else they can think of. They often win the Team Spirit Award at the walk! “MitoAction is the voice of the mitochondrial disease patient community, and we are inspired by the teams, families, sponsors, and individuals who come together each year to support this event,” said Cristy Balcells, MitoAction’s Executive Director. “For us, celebrating the 10th anniversary of the MitoAction Energy Walk & 5K signifies much more than excitement about an annual event. September 14th is a celebration of the heroes in our community, of our shared successes and frustrations, and of tremendous growth. We are proud to walk together and to raise awareness in Boston about mitochondrial disease.” Rita looks forward to talking with different people and offering a kind word. “I encourage people as much as I can; I try to lift up their spirits. A kind word goes a long way.” The walk is presented by America’s Compounding Center and sponsored by Stealth Peptides, Courtagen Life Sciences, Inc., ThriveRx, Acton Pharmacy, and Deep River Snacks. Proceeds from the walk/5K benefit MitoAction, a Boston-based 501(c)(3) dedicated to improving the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, and clinical research initiatives. Learn more at [www.MitoAction.org](https://www.mitoaction.org). For more information, email[ walk@mitoaction.org](mailto:walk@mitoaction.org) or call 888-648-6228. To register, visit [www.mitoaction.org/energywalk](https://www.mitoaction.org/energywalk). **Categories:** Patient Spotlight --- ### [On the Wings of Hope](https://www.mitoaction.org/on-the-wings-of-hope/) **Published:** October 22, 2019 **Author:** Sarah Harty **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Lori Jubinville of Chicopee, MA, was diagnosed with mitochondrial disease in June 2005. In September 2005, Lori and husband Mark attended the first MitoAction Energy Walk. This year, along with MitoAction, the couple will mark 10 years of walking to raise awareness about this devastating disease. The 10th annual MitoAction Energy Walk & 5K, presented by America’s Compounding Center, will be held Sunday, Sept. 14, 2014 at DCR’s Mother’s Rest in South Boston, MA. For more information and to register, please visit [www.mitoaction.org/energywalk](https://www.mitoaction.org/energywalk). Soon after Lori’s diagnosis of mitochondrial disease, complex I, she heard about the walk from her doctor. “We started fighting from the get-go,” Lori said about their decision to attend the walk. “I had never heard of mitochondrial disease.” “It was hard,” Mark said about getting the diagnosis. “We didn’t know anything. We had no clue what to do, what to expect.” Mitochondrial disease is an inherited chronic illness that can be present at birth or develop later in life. It causes debilitating physical, developmental, and mental disabilities with symptoms including poor growth; loss of muscle coordination; muscle weakness and pain; seizures; vision and/or hearing loss; gastrointestinal issues; learning disabilities; and heart, liver, or kidney failure. About 1 in 2,000 people has Mito. It’s progressive and there is no cure. Lori was born with cerebral arteriovenous malformation (AVM), an abnormal connection between the arteries and veins in the brain. She suffered her first stroke at age 17, and her fourth and most severe stroke in 1992. She has partial sight and hearing loss and her left side is paralyzed. The AVM was removed and she was able to start exercising again. But then the fatigue started, the heaviness and pain in her legs and arms grew. Her head felt like a bowling ball; it felt like the blood in her legs was frozen. After numerous tests, muscle biopsies, and 10 years, Lori, at age 44, was finally diagnosed with Mito, which caused two more strokes in 2008. That first walk, around Boston Common, attracted about 100 people, Mark estimates. This year, more than 1,200 people from around New England and as far away as California will attend to raise awareness and gain support. “Being with so many other people who face the same thing is a good thing,” Mark said. “You’re not the only one … it helps to see that.” That first walk had a tent, a couple of booths, and coffee and bagels. Back then, MitoAction was known as the Mitochondrial Disease Action Committee. Lori and Mark marvel at how the walk has grown in 10 years, from the number of people and teams participating to the major sponsors now onboard who have information booths at the event. The walk is presented by America’s Compounding Center and sponsored by Stealth Peptides, Courtagen Life Sciences, Inc., ThriveRx, Acton Pharmacy, and Deep River Snacks. “Anytime you can walk away from that day and gain at least one piece of knowledge, you’re ahead of the game,” Mark said. Lori, who captains Lori’s Wings of Hope team, looks forward to the walk every year because it keeps hope alive. “Hope is my favorite word. If you don’t have hope, you don’t have anything,” she said. She also looks forward to seeing the friends she has made at past walks. “It’s the camaraderie,” Mark said. “You meet a lot of people there.” “MitoAction is the voice of the mitochondrial disease patient community, and we are inspired by the teams, families, sponsors, and individuals who come together each year to support this event,” said Cristy Balcells, MitoAction’s Executive Director. “For us, celebrating the 10th anniversary of the MitoAction Energy Walk and 5K signifies much more than excitement about an annual event. September 14th is a celebration of the heroes in our community, of our shared successes and frustrations, and of tremendous growth. We are proud to walk together and to raise awareness in Boston about mitochondrial disease.” While the walk kicks off Mitochondrial Disease Awareness Week, the Jubinvilles and their son, Joe, raise awareness year-round. They named their yellow lab “Mito,” which always leads to an explanation of the name. Mark has T-shirts from every MitoAction walk and wears them to places where he’ll meet a lot of people. They leave MitoAction brochures at doctors’ offices and hospitals. They wear their Mito bracelets all the time. And they ask their friends to bring up Mito when talking to others so they can explain it, too. Proceeds from the walk/5K benefit MitoAction, a Boston-based 501(c)(3) dedicated to improving the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, and clinical research initiatives. Learn more at [www.MitoAction.org](https://www.mitoaction.org). For more information, email or call 888-648-6228. To register, visit [www.mitoaction.org/energywalk](https://www.mitoaction.org/energywalk). **Categories:** Patient Spotlight --- ### [NEW UPDATED! List of Medicines to be Used in Caution in Mitochondrial Disease 2020](https://www.mitoaction.org/new-updated-list-of-medicines-to-be-used-in-caution-in-mitochondrial-disease-2020/) **Published:** February 11, 2020 **Author:** Soozi Scheller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **“Hot off the press!” The new, updated list of medicines to be used with caution in mitochondrial disease 2020** **Suggestions**: 1. Copy/paste or otherwise download this updated list for handy reference (part of ICE in the mobile phone, on your laptop . . . for those authorized to assist in health care emergency). 2. Print this list, keep copies at home, in the glove compartment . . . 3. Share this list with your health care providers or place copies in your health records for reference. 4. Share with others you know who might be affected. **Link to the list of medicines on the IMP website:** **Categories:** Mitochondrial Disease News --- ### [Microbiome-derived carnitine mimics as previously unknown mediators of gut-brain axis communication](https://www.mitoaction.org/microbiome-derived-carnitine-mimics-as-previously-unknown-mediators-of-gut-brain-axis-communication-2/) **Published:** March 13, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Alterations to the gut microbiome are associated with various neurological diseases, yet evidence of causality and identity of microbiome-derived compounds that mediate gut-brain axis interaction remain elusive. Here, we identify two previously unknown bacterial metabolites 3-methyl-4-(trimethylammonio)butanoate and 4-(trimethylammonio)pentanoate, structural analogs of carnitine that are present in both gut and \[…\] [Click here to view original web page at advances.sciencemag.org](https://advances.sciencemag.org/content/6/11/eaax6328) **Categories:** Mitochondrial Disease News --- ### [Marquis Family Fighting for Little Miss Roo](https://www.mitoaction.org/marquis-family-fighting-for-little-miss-roo/) **Published:** October 22, 2019 **Author:** Sarah Harty **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") DERRY, NH –Amy and Jason Marquis’ daughter was given a death sentence. Riley, also known as Little Miss Roo, has Leigh’s Disease, one of the most devastating forms of mitochondrial disease. When they got the diagnosis on March 9, 2014, “I asked the doctor, ‘Is this a death sentence?’ and she said yes,” Amy said, noting they were told it’s a slow progressing disease and they would likely have a couple years. But Leigh’s kids actually experience a rapid regression and the 17-month-old has had several close calls with death, the last of which landed her in the hospital for more than three months and included a bout with viral meningitis and led to a tracheotomy for her to breathe. Riley was finally able to go home on Aug. 7. When Amy heard about the MitoAction Energy Walk & 5K presented by America’s Compounding Center, she said, “We needed to do this. We need to get awareness out. Let people know it’s a disease. I have to explain it so many times.” Amy captains the team “Little Miss Roo.” The 10th annual MitoAction Energy Walk & 5K will be held Sunday, Sept. 14, 2014 at DCR’s Mother’s Rest in South Boston, MA. For more information and to register, please visit [www.mitoaction.org/energywalk](https://www.mitoaction.org/energywalk). Riley has a twin brother named Carter. The Derry, NH, family noticed that at 9 months, Riley couldn’t do the same things as Carter. Riley had low muscle tone, she was wobbly and fell a lot, and she stopped crying. “She hasn’t cried since 9 months,” Amy said. Then Riley had what was thought to be a seizure and the journey to a diagnosis began. Mitochondrial disease is an inherited chronic illness that can be present at birth or develop later in life. It causes debilitating physical, developmental, and mental disabilities with symptoms including poor growth; loss of muscle coordination; muscle weakness and pain; seizures; vision and/or hearing loss; gastrointestinal issues; learning disabilities; and heart, liver, or kidney failure. About 1 in 2,000 people has Mito. It’s progressive and there is no cure. The Marquis know more heartbreak than most. After taking fertility drugs in 2009, and it taking on the first try, Amy lost one triplet in utero and the other two were stillborn. In 2012, their son lost his life in a day care accident. And now this … Amy’s mission is to raise awareness about Mito. “It gives me something to do,” she said. “It’s my outlet. I’ll have time to cry later.” To that end, Amy has started the Facebook page “Prayers for Roo” to share Riley’s life with others. She made shirts for Riley supporters that contain the words “Mito awareness” that friends all over the country wear. She drops Mito facts whenever and wherever she can. She’s part of different online forums and boards. And they are attending the MitoAction walk, hopefully with Little Miss Roo in tow. “I’m looking forward to the experience and getting together with all the people there, to share awareness for the same disease,” Amy said. “I’m looking forward to bonding with families going through the same things.” “MitoAction is the voice of the mitochondrial disease patient community, and we are inspired by the teams, families, sponsors, and individuals who come together each year to support this event,” said Cristy Balcells, MitoAction’s Executive Director. “For us, celebrating the 10th anniversary of the MitoAction Energy Walk & 5K signifies much more than excitement about an annual event. September 14th is a celebration of the heroes in our community, of our shared successes and frustrations, and of tremendous growth. We are proud to walk together and to raise awareness in Boston about mitochondrial disease.” The walk is presented by America’s Compounding Center and sponsored by Stealth Peptides, Courtagen Life Sciences, Inc., ThriveRx, Acton Pharmacy, and Deep River Snacks. Proceeds from the walk/5K benefit MitoAction, a Boston-based 501(c)(3) dedicated to improving the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, and clinical research initiatives. Learn more at [www.MitoAction.org](https://www.mitoaction.org). For more information, email or call 888-648-6228. To register, visit [www.mitoaction.org/energywalk](https://www.mitoaction.org/energywalk). **Categories:** Patient Spotlight --- ### [Team Lissy Loo Creates Colorful Fundraiser](https://www.mitoaction.org/team-lissy-loo-creates-colorful-fundraiser/) **Published:** October 22, 2019 **Author:** Sarah Harty **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") One little girl is using the colors of the rainbow to raise awareness about mitochondrial disease, the disorder that affects her. Alyssa Curley, the heart and soul of Team Lissy Loo of the MitoAction Energy Walk & 5K, decided to make and sell rainbow loom bracelets to benefit MitoAction. Every year Alyssa’s mom, Kelley Curley, and family come up with a major project to raise funds on behalf of their team. Last year, it was a cookbook. This year, it’s loom bracelets. “Alyssa got the idea after getting a rainbow loom for Christmas,” said the Mansfield, MA, mom. Alyssa and Kelley spend time every night making the bracelets – it takes Alyssa about 10 minutes to make one and Kelley about three minutes — and Kelley sells them online. So far they have sold more than 400! Kelley’s lifelong mission is to raise awareness about the disease that affects her 7-year-old daughter. It’s a year-round effort that culminates at the MitoAction Energy Walk & 5K presented by America’s Compounding Center. This year will be Team Lissy Loo’s fourth walk and MitoAction’s 10th! The event will be held Sunday, Sept. 14, 2014 at DCR’s Mother’s Rest in South Boston, MA. Register today at [www.mitoaction.org/energywalk](https://www.mitoaction.org/energywalk). Mitochondrial disease is an inherited chronic illness that can be present at birth or develop later in life. It causes debilitating physical, developmental, and mental disabilities with symptoms including poor growth; loss of muscle coordination; muscle weakness and pain; seizures; vision and/or hearing loss; gastrointestinal issues; learning disabilities; and heart, liver, or kidney failure. About 1 in 2,000 people has Mito. It’s progressive and there is no cure. Alyssa’s diagnosis is Mito Complex III, hypotonia, failure to thrive, dysmotility, asthma, severe GERD, and is tube-dependent. It’s been a particularly rough winter for Alyssa. She’s been hospitalized many times. She’s had back-to-back infections, back-to-back-to-back strep infections, bronchitis, and stomach infections that required numerous g-tube replacements. And while these issues – as well as Kelley’s own health issues (lupus) — have slowed the family down, it hasn’t stopped them from their mission. In addition to the bracelet project, Kelley’s employer, Mini Miracles, holds a Hop-A-Thon for Team Lissy Loo and the family does canister drives and bake sales at local grocery stores that include information about Mito. The walk is especially important this year after the Justina Pelletier case, said Kelley. “It’s still not a well-known disease,” she said. “It’s crucial to get people to know about and understand Mito. “It’s important to get the word out about acceptance. Mito is real. It affects all members of the family.” Alyssa is proud of her team and knows the walk is about raising awareness. But she’s also becoming more aware that she’s a little different from other kids. “She’s very self-conscious of her disease,” Kelley said. “She’s been teased and didn’t want to wear her tube anymore.” But at the walk, Alyssa is a member of a loving, supportive MitoAction community that comes together every year to raise awareness and celebrate the lives of all who have Mito. “MitoAction is the voice of the mitochondrial disease patient community, and we are inspired by the teams, families, sponsors, and individuals who come together each year to support this event,” said Cristy Balcells, MitoAction’s Executive Director. “For us, celebrating the 10th anniversary of the MitoAction Energy Walk & 5K signifies much more than excitement about an annual event. September 14th is a celebration of the heroes in our community, of our shared successes and frustrations, and of tremendous growth. We are proud to walk together and to raise awareness in Boston about mitochondrial disease.” The event is presented by America’s Compounding Center and sponsored by Stealth Peptides, Courtagen Life Sciences, Inc., ThriveRx, Acton Pharmacy, and Deep River Snacks. Proceeds from the walk/5K benefit MitoAction, a Boston-based 501(c)(3) dedicated to improving the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, and clinical research initiatives. Learn more at www.MitoAction.org. For more information, email[ walk@mitoaction.org](mailto:walk@mitoaction.org) or call 888-648-6228. To register, visit [www.mitoaction.org/energywalk](https://www.mitoaction.org/energywalk). **Categories:** Patient Spotlight --- ### [Correcting Barth Syndrome With Gene Therapy](https://www.mitoaction.org/correcting-barth-syndrome-with-gene-therapy/) **Published:** March 19, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Barth syndrome is an X-linked metabolic disorder, affecting only males. It has widespread systemic effects presenting with cardiomyopathy, neutropenia, muscle weakness, stunted growth, exercise intolerance and abnormal skeletal structures. In many cases, it results in stillbirth. It is strongly related to mutations in the tafazzin gene, also known as \[…\] [Click here to view original web page at www.gilmorehealth.com](https://www.gilmorehealth.com/correcting-barth-syndrome-with-gene-therapy/) **Categories:** Mitochondrial Disease News --- ### [Team supercharged cells with mitochondrial transplantation](https://www.mitoaction.org/team-supercharged-cells-with-mitochondrial-transplantation/) **Published:** March 25, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Researchers at the University of California, Irvine have shown that they can give cells a short-term boost of energy through mitochondrial transplantation. The team’s study, published today in the Journal of the American Heart Association , suggests that mitochondrial transplantation could one day be employed to cure various cardiovascular, \[…\] [Click here to view original web page at scienceblog.com](https://scienceblog.com/514961/team-supercharged-cells-with-mitochondrial-transplantation/) **Categories:** Mitochondrial Disease News --- ### [Worsening Physical Impairments Affect Quality of Life in FA, Study Shows](https://www.mitoaction.org/worsening-physical-impairments-affect-quality-of-life-in-fa-study-shows/) **Published:** March 19, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > FRIEDREICH’S ATAXIA: Physical impairments that worsen with disease progression are the main contributors to a poor health-related quality of life among people with Friedreich’s ataxia (FA), according to a recent study. Data also showed that quality of life measures effectively reflected disease progression in FA patients. That suggests they could be \[…\] [Click here to view original web page at friedreichsataxianews.com](https://friedreichsataxianews.com/2020/03/12/worsening-physical-impairments-significantly-affect-quality-of-life-fa-study-shows/) **Categories:** Mitochondrial Disease News --- ### [2 New Mutations in Mitochondrial Genes Linked to Complex I Deficiency](https://www.mitoaction.org/2-new-mutations-in-mitochondrial-genes-linked-to-complex-i-deficiency/) **Published:** March 19, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > New mutations in two mitochondrial genes, found through biopsies taken after years of complaints, led to mitochondrial complex I deficiency — with widely differing symptoms — being diagnosed in two patients, a case study reported. These findings highlight the importance of muscle biopsies taken to identify a disease, and \[…\] [Click here to view original web page at mitochondrialdiseasenews.com](https://mitochondrialdiseasenews.com/2020/03/13/new-mutations-in-mitochondrial-genes-linked-to-complex-i-deficiency/) **Categories:** Mitochondrial Disease News --- ### [Gene Therapy Reverses Heart Failure in Animal Model of Barth Syndrome](https://www.mitoaction.org/gene-therapy-reverses-heart-failure-in-animal-model-of-barth-syndrome-3/) **Published:** March 15, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Boston Children’s Hospital researchers used an investigational gene therapy to treat heart failure in a mouse model of Barth syndrome. Barth syndrome is a rare genetic disorder in boys that results in life-threatening heart failure. It also causes weakness of the skeletal muscles and the immune system. The disease \[…\] [Click here to view original web page at www.biospace.com](https://www.biospace.com/article/experimental-gene-therapy-reverses-heart-failure-in-mice/) **Categories:** Mitochondrial Disease News --- ### [New biochemical mechanism in cells is crucial component of anti-aging program](https://www.mitoaction.org/new-biochemical-mechanism-in-cells-is-crucial-component-of-anti-aging-program/) **Published:** March 17, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > EXPLAINS ROS ROLE:Aging is an inevitable part of life, yet some species are aging very differently than others, even than very similar ones. Naked mole rats for example, an east African rodent of a size comparable to moles or mice, show a strongly delayed process of aging and live up to \[…\] [Click here to view original web page at www.news-medical.net](https://www.news-medical.net/news/20200311/New-biochemical-mechanism-in-cells-is-crucial-component-of-anti-aging-program.aspx) **Categories:** Mitochondrial Disease News --- ### [Study Provides Insights Into How Cells Defend Themselves From Viruses](https://www.mitoaction.org/study-provides-insights-into-how-cells-defend-themselves-from-viruses/) **Published:** March 20, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > MITOCHONDRIA ARE INOVLVED: Credit: Pixabay A protein known to help cells defend against infection also regulates the form and function of mitochondria, according to a new paper in Nature Communications. The protein, one of a group called myxovirus-resistance (Mx) proteins, help cells fight infections without the use of systemic antibodies or white \[…\] [Click here to view original web page at www.technologynetworks.com](https://www.technologynetworks.com/cell-science/news/study-provides-insights-into-how-cells-defend-themselves-from-viruses-331611) **Categories:** Mitochondrial Disease News --- ### [PD98059 Protects Cerebral Cortex Mitochondrial Structure and Function at 48 h Post-Resuscitation in a Rat Model of Cardiac Arrest](https://www.mitoaction.org/pd98059-protects-cerebral-cortex-mitochondrial-structure-and-function-at-48-h-post-resuscitation-in-a-rat-model-of-cardiac-arrest/) **Published:** March 13, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > MITOCHONDRIA AND BRAIN INJURY STUDY: Accepted for publication 29 January 2020 Published 12 March 2020 Volume 2020:14 Pages 1107—1115 Checked for plagiarism Yes Peer reviewer comments 2 1 Integrated Internal Medicine, Affiliated Tumor Hospital of Guangxi Medical University, Nanning, Guangxi 530021, People’s Republic of China; 2 Department of Intensive Care Unit, The Second Affiliated \[…\] [Click here to view original web page at www.dovepress.com](https://www.dovepress.com/pd98059-protects-cerebral-cortex-mitochondrial-structure-and-function--peer-reviewed-article-DDDT) **Categories:** Mitochondrial Disease News --- ### [MOF delivers cancer drug candidate straight to mitochondria](https://www.mitoaction.org/mof-delivers-cancer-drug-candidate-straight-to-mitochondria/) **Published:** April 15, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > INTERESTING – MOST CANCER CELLS USE A DIFFERENT FORM OF METABOLISM THAN MITOCHONDRIAL ATP PRODUCTION: Super-resolution imaging of breast cancer cells (MCF-7). Images show mitochondria coloured in red, MOFs in green, and nuclei in blue. The MOF-based drug delivery system induce changes in the shape of mithocondria A metal-organic framework (MOF) has been created to effectively smuggle drugs into mitochondria, which are where cancers \[…\] [Click here to view original web page at www.chemistryworld.com](https://www.chemistryworld.com/news/mof-delivers-cancer-drug-candidate-straight-to-mitochondria/4011516.article) **Categories:** Mitochondrial Disease News --- ### [Muscle MRI Reveals Deterioration in Late-onset Pompe Patients, Study Says](https://www.mitoaction.org/muscle-mri-reveals-deterioration-in-late-onset-pompe-patients-study-says/) **Published:** April 17, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > People with late-onset Pompe disease (LOPD) show significant increases in the amount of muscle replaced by fat while on treatment, which is linked to reduced muscle strength and motor function, according to a new study. These findings support the use of muscle imaging to assess disease progression in clinical \[…\] [Click here to view original web page at pompediseasenews.com](https://pompediseasenews.com/2020/04/16/muscle-mri-reveals-muscle-deterioration-in-lopd-patients-study-says/) **Categories:** Mitochondrial Disease News --- ### [Alterations in Nerve Cells’ Proteins May Lead to Neurodegeneration in FA, Mouse Study Suggests](https://www.mitoaction.org/alterations-in-nerve-cells-proteins-may-lead-to-neurodegeneration-in-fa-mouse-study-suggests/) **Published:** April 23, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > RE: FRIEDRICH:S ATAXIA: Altered regulation of a protein called actin may contribute to neurodegeneration in Friedreich’s ataxia , according to a study in a mouse model of the disease. The work highlighted a potential association between the underlying cause of FA (lack of the frataxin protein) and both over-activation of cofilin (a \[…\] [Click here to view original web page at friedreichsataxianews.com](https://friedreichsataxianews.com/2020/04/23/alterations-in-nerve-cells-proteins-may-lead-to-neurodegeneration-in-fa-mouse-study-suggests/) **Categories:** Mitochondrial Disease News --- ### [Link between blood vessel inflammation, malfunctioning cellular powerhouses](https://www.mitoaction.org/link-between-blood-vessel-inflammation-malfunctioning-cellular-powerhouses/) **Published:** May 12, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > The vast majority of cells in the human body contain tiny power plants known as mitochondria that generate much of the energy cells use for day-to-day activities. Like a dynamic renewable resource, these little power plants are constantly dividing and uniting in processes called fission and fusion. The balance \[…\] [Click here to view original web page at www.sciencedaily.com](https://www.sciencedaily.com/releases/2020/05/200511092931.htm) **Categories:** Mitochondrial Disease News --- ### [Vitamin B3 Has Therapeutic Effect in Progressive Muscle Disease](https://www.mitoaction.org/vitamin-b3-has-therapeutic-effect-in-progressive-muscle-disease/) **Published:** May 14, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > RE: MITOCHONDRIAL MYOPATHY: Credit: Eija Pirinen; A. Wartiovaara’s research group. An international team of scientists, led by University of Helsinki reported that vitamin B3, niacin, has therapeutic effect in progressive muscle disease. Niacin delayed disease progression in patients with mitochondrial myopathy, a progressive disease with no previous curative treatments. Vitamin B3 forms \[…\] [Click here to view original web page at www.technologynetworks.com](https://www.technologynetworks.com/tn/news/vitamin-b3-has-therapeutic-effect-in-progressive-muscle-disease-334820) **Categories:** Mitochondrial Disease News --- ### [Mitochondrial Pathways Not the Culprit in Bortezomib Neurotoxicity, Study Finds](https://www.mitoaction.org/mitochondrial-pathways-not-the-culprit-in-bortezomib-neurotoxicity-study-finds/) **Published:** April 17, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > New research evaluates bortezomib and carfilzomib in an attempt to understand the causes of neurotoxicity in the former. They found the mitochondrial pathway is likely not the problem. Higher rates of neurotoxicity in bortezomib compared to carfilzomib do not appear to be due to mitochondrial pathways, but rather due \[…\] [Click here to view original web page at www.ajmc.com](https://www.ajmc.com/newsroom/mitochondrial-pathways-not-the-culprit-in-bortezomib-neurotoxicity-study-finds) **Categories:** Mitochondrial Disease News --- ### [Metabolic stroke or stroke-like lesion: Peculiarities of a phenomenon](https://www.mitoaction.org/metabolic-stroke-or-stroke-like-lesion-peculiarities-of-a-phenomenon/) **Published:** April 20, 2020 **Author:** Soozi Scheller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Journal of the Neurological Sciences (02/07/2020)- Short scientific article about the study of stroke-like lesions in MELAS, highlights: - Stroke-like lesions (SLLs) are a unique CNS feature of various MIDs, in particular MELAS. - SLLs run through an acute and chronic stage, are dynamic, and change their appearance over time. - SLLs must be identified as they are accessible to treatment, which is at variance from that of ischemic stroke. To access the full article, click this link: **Categories:** Mitochondrial Disease News --- ### [First Simulation of a Full-Sized Mitochondrial Membrane](https://www.mitoaction.org/first-simulation-of-a-full-sized-mitochondrial-membrane-2/) **Published:** May 9, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Snapshot of the membranes of an entire organelle, a mitochondrion, simulated for the first time at molecular resolution. Scientists from the University of Groningen have developed a method that combines different resolution levels in a computer simulation of biological membranes. Their algorithm backmaps a large-scale model that includes features, \[…\] [Click here to view original web page at www.labmanager.com](https://www.labmanager.com/news/first-simulation-of-a-full-sized-mitochondrial-membrane-22638) **Categories:** Mitochondrial Disease News --- ### [Study Illuminates the Role of Mitochondria in Neurodegeneration](https://www.mitoaction.org/study-illuminates-the-role-of-mitochondria-in-neurodegeneration/) **Published:** May 12, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Researchers at the University of Pittsburgh have found a way to observe how misbehaving mitochondria can lead to neurological problems resembling neurodegenerative diseases in humans. The study, published recently in eLife , uses genetically-modified zebrafish larvae, whose see-through bodies give researchers a chance to watch what’s happening inside their \[…\] [Click here to view original web page at inside.upmc.com](https://inside.upmc.com/study-illuminates-the-role-of-mitochondria-in-neurodegeneration/) **Categories:** Mitochondrial Disease News --- ### [Intracellular delivery of Parkin rescues neurons from accumulation of damaged mitochondria and pathological α-synuclein](https://www.mitoaction.org/intracellular-delivery-of-parkin-rescues-neurons-from-accumulation-of-damaged-mitochondria-and-pathological-α-synuclein/) **Published:** April 30, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > FOCUS IS ON PARKINSON’S DISEASE: Parkinson’s disease (PD) is a progressive neurodegenerative disorder characterized by mitochondrial dysfunction, Lewy body formation, and loss of dopaminergic neurons. Parkin, an E3 ubiquitin ligase, is thought to inhibit PD progression by removing damaged mitochondria and suppressing the accumulation of α-synuclein and other protein aggregates. The present study describes \[…\] [Click here to view original web page at advances.sciencemag.org](https://advances.sciencemag.org/content/6/18/eaba1193) **Categories:** Mitochondrial Disease News --- ### [Ultrasound May Help Assess Diaphragm Dysfunction in LOPD Patients](https://www.mitoaction.org/ultrasound-may-help-assess-diaphragm-dysfunction-in-lopd-patients/) **Published:** March 27, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > NEWS FOR LATE-ONSET POMPE DISEASE PATIENTS: Ultrasound could help evaluate diaphragm and respiratory function in people with late-onset Pompe disease (LOPD), a study suggests. The study, “ Ultrasound assessment of diaphragm function in patients with late-onset Pompe disease ,” was published in the journal Neurological Sciences. LOPD is a genetic disorder caused by mutations \[…\] [Click here to view original web page at pompediseasenews.com](https://pompediseasenews.com/2020/03/26/diaphragm-ultrasound-may-help-assess-diaphragm-dysfunction-in-lopd/) **Categories:** Mitochondrial Disease News --- ### [Spinal Nerve Healing Enhanced by Boost in Cellular Energy, New Findings Reveal](https://www.mitoaction.org/spinal-nerve-healing-enhanced-by-boost-in-cellular-energy-new-findings-reveal/) **Published:** March 31, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > MITOCHONDRIA AND CREATINE ROLES: Credit: iStock images Every year, up to half a million people around the world suffer a spinal cord injury. Such injuries can damage a few, many, or almost all of the nearby axons—the extensions of nerve cells that carry signals up and down the spinal cord between the brain \[…\] [Click here to view original web page at www.technologynetworks.com](https://www.technologynetworks.com/neuroscience/news/spinal-nerve-healing-enhanced-by-boost-in-cellular-energy-new-findings-reveal-332713) **Categories:** Mitochondrial Disease News --- ### [Gut Microbiota Regulates Depression-Like Behavior in Rats Through the Neuroendocrine-Immune-Mitochondrial Pathway](https://www.mitoaction.org/gut-microbiota-regulates-depression-like-behavior-in-rats-through-the-neuroendocrine-immune-mitochondrial-pathway/) **Published:** April 5, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > MICROBIOTA IN THE GUT INFLUENCE MITOCHONDRIA THERE: Authors Liu S, Guo R, Liu F, Yuan Q, Yu Y , Ren F Accepted for publication 1 March 2020 Published 31 March 2020 Volume 2020:16 Pages 859—869 Checked for plagiarism Yes Peer reviewer comments 2 1 Second Clinical Medical College, Beijing University of Chinese Medicine, Beijing 100029, People’s \[…\] [Click here to view original web page at www.dovepress.com](https://www.dovepress.com/gut-microbiota-regulates-depression-like-behavior-in-rats-through-the--peer-reviewed-article-NDT) **Categories:** Mitochondrial Disease News --- ### [Researchers uncover molecular link between trans fats and variety of disorders](https://www.mitoaction.org/researchers-uncover-molecular-link-between-trans-fats-and-variety-of-disorders/) **Published:** April 5, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > MITOCHONDRIAL CONNECTION: Tohoku University researchers in Japan have uncovered a molecular link between some trans fats and a variety of disorders, including cardiovascular and neurodegenerative diseases. Their findings, published in the journal Science Reports, implicate their role in enhancing a mitochondrial signaling pathway that leads to programmed cell death. Accumulating evidence \[…\] [Click here to view original web page at www.news-medical.net](https://www.news-medical.net/news/20200325/Researchers-uncover-molecular-link-between-trans-fats-and-variety-of-disorders.aspx) **Categories:** Mitochondrial Disease News --- ### [Study reveals importance of mitochondrial small proteins in energy production](https://www.mitoaction.org/study-reveals-importance-of-mitochondrial-small-proteins-in-energy-production/) **Published:** April 17, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Credit: CC0 Public Domain A newly discovered small protein in mitochondria is essential for energy production, report Duke-NUS researchers and their colleagues in the journal Nature Communications . Zebrafish lacking the small protein, which the scientists named BRAWNIN, have similar features to rare mitochondrial diseases in humans, suggesting further \[…\] [Click here to view original web page at phys.org](https://phys.org/news/2020-04-reveals-importance-mitochondrial-small-proteins.html) **Categories:** Mitochondrial Disease News --- ### [Study reveals new mechanism underlying organelle communication in brown fat cells](https://www.mitoaction.org/study-reveals-new-mechanism-underlying-organelle-communication-in-brown-fat-cells/) **Published:** March 31, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > MITOCHONDRIAL ROLE DESCRIBED, TECHNICAL ARTICLE: In recent years, brown fat has garnered increasing attention as the so-called good fat that can protect against obesity and associated health risks, like cardiovascular disease and diabetes. Brown fat is located in small pockets throughout the body and helps maintain body temperature in cold environments. It gets its \[…\] [Click here to view original web page at www.news-medical.net](https://www.news-medical.net/news/20200330/Study-reveals-new-mechanism-underlying-organelle-communication-in-brown-fat-cells.aspx) **Categories:** Mitochondrial Disease News --- ### [Golgi-derived PI(4)P-containing vesicles drive late steps of mitochondrial division](https://www.mitoaction.org/golgi-derived-pi4p-containing-vesicles-drive-late-steps-of-mitochondrial-division/) **Published:** April 7, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > SHORT ABSTRACT POINTING TO SOURCE OF CHANGES IN MITOCHONDRIA: PI(4)P regulates mitochondrial fission Mitochondria are dynamic intracellular organelles, the shape and number of which are regulated by various cell-signaling pathways. Mitochondrial division is driven by the recruitment of a constricting guanosine triphosphatase protein at sites of contact with the endoplasmic reticulum, but other factors, including lysosomes, are also \[…\] [Click here to view original web page at science.sciencemag.org](https://science.sciencemag.org/content/367/6484/1366.editor-summary) **Categories:** Mitochondrial Disease News --- ### [Mitochondria Transplant Could Someday Be Viable Treatment Option, Study Shows](https://www.mitoaction.org/mitochondria-transplant-could-someday-be-viable-treatment-option-study-shows/) **Published:** April 11, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Transplanting mitochondria — the cell compartments responsible for the production of energy in our body — from healthy skeletal muscle cells provides a short-term energy boost in heart cells, a study has found. These findings suggest that mitochondria transplants could one day be used therapeutically to treat mitochondrial diseases \[…\] [Click here to view original web page at mitochondrialdiseasenews.com](https://mitochondrialdiseasenews.com/2020/04/10/mitochondria-transplant-could-become-viable-treatment-option/) **Categories:** Mitochondrial Disease News --- ### [Neonatal diet impacts liver mitochondrial bioenergetics in piglets fed formula or human milk](https://www.mitoaction.org/neonatal-diet-impacts-liver-mitochondrial-bioenergetics-in-piglets-fed-formula-or-human-milk/) **Published:** April 17, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > EARLY STUDY IN A LOOK AT NEONATAL FEEING EFFECTS METABOLISM: Abstract Neonatal diet impacts many physiological systems and can modify risk for developing metabolic disease and obesity later in life. Less well studied is the effect of postnatal diet (e.g., comparing human milk (HM) or milk formula (MF) feeding) on mitochondrial bioenergetics. Such effects may be most profound in \[…\] [Click here to view original web page at bmcnutr.biomedcentral.com](https://bmcnutr.biomedcentral.com/articles/10.1186/s40795-020-00338-7) **Categories:** Mitochondrial Disease News --- ### [Single-cell analysis provides new insights into mitochondrial diseases](https://www.mitoaction.org/single-cell-analysis-provides-new-insights-into-mitochondrial-diseases/) **Published:** August 14, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > BOSTON – Investigators led by a team at Massachusetts General Hospital (MGH) have made discoveries at the single cell level to uncover new details concerning mitochondrial diseases– inherited disorders that interfere with energy production in the body and currently have no cure. The findings, which are published in the \[…\] [Click here to view original web page at www.eurekalert.org](https://www.eurekalert.org/pub_releases/2020-08/mgh-sap081320.php) **Categories:** Mitochondrial Disease News --- ### [Essential function for histones: making copper accessible](https://www.mitoaction.org/study-pinpoints-new-function-for-histones/) **Published:** July 3, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > IMPLICATIONS FOR MITOCHONDRIAL FUNCTION RELATED TO COPPER’S ROLE IN CELLULAR HEALTH: From left: Maria Vogelauer, lead author Siavash Kurdistani, Chen Cheng and Oscar Campos FINDINGS UCLA scientists have identified a new function for histones, the spool-shaped proteins that regulate gene expression and serve as anchors for strands of DNA to wrap around. The researchers discovered that histones act as an \[…\] [Click here to view original web page at www.newswise.com](https://www.newswise.com/articles/study-pinpoints-new-function-for-histones) **Categories:** Mitochondrial Disease News --- ### [COVID-19: Mitochondria’s Pivotal Role in COVID-19.](https://www.mitoaction.org/covid-19-mitochondrias-pivotal-role-in-covid-19-3/) **Published:** July 20, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > GEBERAL ARTICLE ABOUT MITOCHONDRIAL DYSFUNCTION: Symptoms such as sleep disturbance, fatigue, appetite disturbance, loss of interest in usual activities, and decreased social interaction are observed in both sickness behavior and clinical depression related to viral infection (1) . Loss of energy, loss of motivation , chronic unremitting fatigue, with or without muscle weakness and \[…\] [Click here to view original web page at www.psychologytoday.com](https://www.psychologytoday.com/ca/blog/the-truisms-wellness/202006/covid-19-mitochondria-s-pivotal-role-in-covid-19) **Categories:** Mitochondrial Disease News --- ### [Study unveils the role of mitochondria in combating Salmonella](https://www.mitoaction.org/study-unveils-the-role-of-mitochondria-in-combating-typhoid-fever/) **Published:** July 25, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > INTERESTING BRIEF DESRIPTION OF ROLE OF MITOCHONDRIA IN IMMUNITY: Salmonella Typhi is bacterias that cause typhoid fever. The bacterias infect the intestinal tract and the blood. The lab of Yale microbiologist Jorge Galan explored an evolutionarily ancient defense system possessed by mitochondria. Using advanced imaging technology, scientists find out that mitochondria produce the compound itaconate to combat Salmonella \[…\] [Click here to view original web page at www.techexplorist.com](https://www.techexplorist.com/role-mitochondria-combating-typhoid-fever/34032/) **Categories:** Mitochondrial Disease News --- ### [Single cells have their own defenses against pathogens](https://www.mitoaction.org/single-cells-have-their-own-defenses-against-pathogens/) **Published:** August 2, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > MITOCHONDRIAL ROLE IN CELLULAR DEFENSE: In the fight against pathogens, most researchers have focused on the diverse immune system arsenal that protects people against infection. However, the lab of Yale microbiologist Jorge Galan explored an evolutionarily ancient defense system possessed by every individual cell in the body. In work published July 24th in the \[…\] [Click here to view original web page at scienceblog.com](https://scienceblog.com/517568/single-cells-have-their-own-defenses-against-pathogens/) **Categories:** Mitochondrial Disease News --- ### [Mitochondria control cells using their own complete fatty acid synthesis machine](https://www.mitoaction.org/mitochondria-control-cells-using-their-own-complete-fatty-acid-synthesis-machine/) **Published:** September 1, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > INFORMATION RE: MEPAN: Pathways in fatty acid metabolism. Credit: eLife (2020). DOI: 10.7554/eLife.58041 It shouldn’t be any secret that mitochondria can make their own fatty acids. The enzymes mitochondria use to do it were discovered decades ago. Unfortunately, only a few individuals among the biologically literate masses have come to appreciate this \[…\] [Click here to view original web page at phys.org](https://phys.org/news/2020-08-mitochondria-cells-fatty-acid-synthesis.html) **Categories:** Mitochondrial Disease News --- ### [Simple change to microscope opens up complex panorama of cells](https://www.mitoaction.org/simple-change-to-microscope-opens-up-complex-panorama-of-cells/) **Published:** September 11, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > A NEWER WAY TO VIEW MITOCHONDRIA: Fluorescence microscopy has offered scientists a colorful panorama of the interior of cells. However, as the scale gets well below a micrometer, its ability to resolve key cellular structures such as nuclear pores or mitochondria diminishes. Yale researchers in the lab of Joerg Bewersdorf have solved this technological problem \[…\] [Click here to view original web page at news.yale.edu](https://news.yale.edu/2020/09/10/simple-change-microscope-opens-complex-panorama-cells) **Categories:** Mitochondrial Disease News --- ### [UoH researchers identify possible cause for platelet reduction in dengue patients](https://www.mitoaction.org/uoh-researchers-identify-possible-cause-for-platelet-reduction-in-dengue-patients/) **Published:** July 13, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > THe DENGUE VIRUS MYSTERY UNFOLDING, THE VIRUS ATTACKS MITOCHONDRIA: Hyderabad : Dengue virus infections pose a significant threat to human health currently, as it has been reported from nearly 140 countries. About 40 per cent of the world’s population is at the risk of dengue virus infections. There is no specific drug or potential vaccine for these infections. \[…\] [Click here to view original web page at www.siasat.com](https://www.siasat.com/uoh-researchers-identify-possible-cause-for-platelet-reduction-in-dengue-patients-1922980/) **Categories:** Mitochondrial Disease News --- ### [Becoming a nerve cell: Timing is of the essence](https://www.mitoaction.org/becoming-a-nerve-cell-timing-is-of-the-essence/) **Published:** August 14, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > MITOCHONDRIAL ROLE DESCRIBED: Human progenitor cells with their DNA-containing nucleus color red after division and their mitochondria labeled in green. Human cells with fragmented mitochondria (top) became neurons (top), whereas those with tubular mitochondria (bottom) remained progenitors. Progenitor cells have their DNA-containing nucleus marked with blue while new born neurons are marked \[…\] [Click here to view original web page at phys.org](https://phys.org/news/2020-08-nerve-cell-essence.html) **Categories:** Mitochondrial Disease News --- ### [Nerve Cells Can Circumvent Mitochondrial Damage with Metabolic Rewiring](https://www.mitoaction.org/nerve-cells-can-circumvent-mitochondrial-damage-with-metabolic-rewiring/) **Published:** September 1, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > As a large portion of society continues to advance into age groups that are at the highest risk for the onset of neurodegenerative diseases, it has become increasingly important to gain a greater understanding of the underlying mechanisms that mediate the onset and progression of these illnesses. A growing \[…\] [Click here to view original web page at www.genengnews.com](https://www.genengnews.com/news/nerve-cells-can-circumvent-mitochondrial-damage-with-metabolic-rewiring/) **Categories:** Mitochondrial Disease News --- ### [Researchers solve decades old mitochondrial mystery that could lead to new disease treatments](https://www.mitoaction.org/researchers-solve-decades-old-mitochondrial-mystery-that-could-lead-to-new-disease-treatments/) **Published:** September 9, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > PHILADELPHIA — Penn Medicine researchers have solved a decades old mystery around a key molecule fueling the power plant of cells that could be exploited to find new ways to treat diseases, from neurodegenerative disorders to cancer. Reporting in a new study published today in Nature , researchers from \[…\] [Click here to view original web page at www.eurekalert.org](https://www.eurekalert.org/pub_releases/2020-09/uops-rsd090920.php) **Categories:** Mitochondrial Disease News --- ### [Texas A&M study offers hope for young children diagnosed with Menkes disease](https://www.mitoaction.org/texas-am-study-offers-hope-for-young-children-diagnosed-with-menkes-disease/) **Published:** May 16, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > MITOCHONDRIAL CYTOCHOROME OXIDASE NEEDS COPPER – COPPER DELIVERY PROGRESS: A Texas A&M AgriLife Research team has good news for patients with copper-deficiency disorders, especially young children diagnosed with Menkes disease. A team led by James Sacchettini, Ph.D. professor and Welch Chair of Science, and Vishal Gohil, Ph.D., associate professor, both from the Department of Biochemistry and Biophysics at \[…\] [Click here to view original web page at www.news-medical.net](https://www.news-medical.net/news/20200509/Texas-AM-study-offers-hope-for-young-children-diagnosed-with-Menkes-disease.aspx) **Categories:** Mitochondrial Disease News --- ### [Endurance Exercise Prevents Symptom Onset in FA Mouse Model, Study Finds](https://www.mitoaction.org/endurance-exercise-prevents-symptom-onset-in-fa-mouse-model-study-finds/) **Published:** May 28, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Endurance exercise prevented the onset of symptoms without the need to restore frataxin production in a mouse model of Friedreich’s ataxia (FA), a study shows, potentially paving the way for clinical research on the impact of endurance exercise in patients. The study, “ Long-term voluntary running prevents the onset \[…\] [Click here to view original web page at friedreichsataxianews.com](https://friedreichsataxianews.com/2020/05/28/endurance-exercise-prevents-symptom-onset-mouse-model-study/) **Categories:** Mitochondrial Disease News --- ### [COVID-19: Mitochondria and the Immune System](https://www.mitoaction.org/covid-19-mitochondria-and-the-immune-system-3/) **Published:** June 17, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > GENERAL ARTICLE: Symptoms such as sleep disturbance, fatigue, appetite disturbance, loss of interest in usual activities, and decreased social interaction are observed in both sickness behavior and clinical depression related to viral infection (1) . Loss of energy, loss of motivation , chronic unremitting fatigue, with or without muscle weakness and \[…\] [Click here to view original web page at www.psychologytoday.com](https://www.psychologytoday.com/ca/blog/the-truisms-wellness/202006/covid-19-mitochondria-and-the-immune-system) **Categories:** Mitochondrial Disease News --- ### [New technique allows scientists to measure mitochondrial respiration in frozen tissue](https://www.mitoaction.org/new-technique-allows-scientists-to-measure-mitochondrial-respiration-in-frozen-tissue/) **Published:** June 23, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > RESEARCH DEVELOPMENT: Left to right: Study authors Linsey Stiles, Dr. Orian Shirihai and Rebeca Acin-Perez. FINDINGS Scientists led by Dr. Orian Shirihai, director of the metabolism theme at the David Geffen School of Medicine at UCLA , have developed a method for restoring oxygen-consumption activity to previously frozen mitochondria samples, even \[…\] [Click here to view original web page at www.miragenews.com](https://www.miragenews.com/new-technique-allows-scientists-to-measure-mitochondrial-respiration-in-frozen-tissue/) **Categories:** Mitochondrial Disease News --- ### [Power outage: Research offers hint about heart weakness in Barth syndrome](https://www.mitoaction.org/power-outage-research-offers-hint-about-heart-weakness-in-barth-syndrome/) **Published:** July 6, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Credit: CC0 Public Domain Barth syndrome is a rare condition that occurs almost exclusively in males. Symptoms include an enlarged and weakened heart. The condition is present at birth or becomes evident early in life. Life expectancy is shortened and there is no treatment. The laboratory of Madesh Muniswamy, \[…\] [Click here to view original web page at phys.org](https://phys.org/news/2020-06-power-outage-hint-heart-weakness.html) **Categories:** Mitochondrial Disease News --- ### [Looking At A Deep Red Light For Just A Few Minutes A Day Can Help Restore Damaged Eyesight](https://www.mitoaction.org/looking-at-a-deep-red-light-for-just-a-few-minutes-a-day-can-help-restore-damaged-eyesight/) **Published:** June 30, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > IMPROVED SIGHT FOUND IN PEOPLE 40 AND OVER, LOW COST DEVICE USED: Eyesight tends to decline from the age of 40 onwards, but looking at a deep red light for 3 minutes a day seems to improve it. Dan Kosmayer/Shutterstock One thing that almost everyone experiences as they age is a decline in their vision, although a new study in the \[…\] [Click here to view original web page at www.iflscience.com](https://www.iflscience.com/health-and-medicine/looking-deep-red-light-just-few-minutes-day-help-restore-damaged-eyesight/) **Categories:** Mitochondrial Disease News --- ### [Yale study suggests leaky mitochondria to be a cause of fragile X symptoms](https://www.mitoaction.org/yale-study-suggests-leaky-mitochondria-to-be-a-cause-of-fragile-x-symptoms/) **Published:** September 19, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Wikimedia Commons In a study published in “Cell” on Aug.13, Yale researchers identified a defect in a cell structure called the mitochondria to be a cause of a rare genetic disorder called “fragile X syndrome.” Led by Associate Research Scientist in Medicine Pawel Licznerski and Professor of Internal Medicine \[…\] [Click here to view original web page at yaledailynews.com](https://yaledailynews.com/blog/2020/09/18/yale-study-suggests-leaky-mitochondria-to-be-a-cause-of-fragile-x-symptoms/) **Categories:** Mitochondrial Disease News --- ### [Activated Charcoal Can Be Used to Treat Injuries, Stroke & Coronavirus](https://www.mitoaction.org/activated-charcoal-can-be-used-to-treat-injuries-stroke-coronavirus/) **Published:** July 3, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > **OXIDIZED** ACTIVATED CHARCOAL REDUCES ROS DAMAGE: Antioxidants are substances that help prevent or hinder cells from being damaged by free radicals or reactive oxygen species (ROS). A new study by Texan scientists reveals how oxidized activated charcoal can be used to treat injuries, strokes, and possibly coronavirus. The team’s oxidized activated charcoal is more complex \[…\] [Click here to view original web page at www.sciencetimes.com](https://www.sciencetimes.com/articles/26303/20200702/activated-charcoal-used-treat-injuries-stroke-coronavirus.htm) **Categories:** Mitochondrial Disease News --- ### [Study Sheds Light on How Air Pollution can Cause Heart Disease](https://www.mitoaction.org/study-sheds-light-on-how-air-pollution-can-cause-heart-disease/) **Published:** July 6, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > NANOPARTICLES, POLLUTANTS, IDENTIFIED IN THE MITOCHONDRIA OF HEART CELLS: A new study has confirmed that harmful metallic air pollution nanoparticles are entering the critical, energy-producing structures inside the hearts of people living in polluted cities, resulting in cardiac stress. Professor Barbara Maher. Image Credit: Lancaster University. Researchers used advanced electron microscopy to demonstrate, for the first time, that \[…\] [Click here to view original web page at www.azocleantech.com](https://www.azocleantech.com/news.aspx?newsID=27574) **Categories:** Mitochondrial Disease News --- ### [New link between calcium and cardiolipin in heart defects](https://www.mitoaction.org/new-link-between-calcium-and-cardiolipin-in-heart-defects/) **Published:** July 7, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > RE: BARTH SYNDROME – The heart needs energy to pump blood. So, energy production defects in heart muscles result in a variety of cardiac diseases. Texas A&M AgriLife scientists have now discovered a new link between calcium, heart energy production and cardiolipin, a type of fat. The discovery helps explain heart defects in \[…\] [Click here to view original web page at www.eurekalert.org](https://www.eurekalert.org/pub_releases/2020-07/taac-nlb070720.php) **Categories:** Mitochondrial Disease News --- ### [Surprising features of mitochondrial protein synthesis uncovered](https://www.mitoaction.org/surprising-features-of-mitochondrial-protein-synthesis-uncovered/) **Published:** June 17, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Credit: CC0 Public Domain Researchers at Karolinska Institutet have uncovered surprising features of mitochondrial protein synthesis. The study, published in Nature Communications , sheds light on the fundamental mechanisms used by the cell’s power plant. Mitochondria are essential organelles containing their own genome and the machinery for its expression. \[…\] [Click here to view original web page at phys.org](https://phys.org/news/2020-06-features-mitochondrial-protein-synthesis-uncovered.html) **Categories:** Mitochondrial Disease News --- ### [LHON RELATED: Recent study offers new insights on a hereditary eye disease](https://www.mitoaction.org/recent-study-offers-new-insights-on-a-hereditary-eye-disease/) **Published:** June 16, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > On June 9, 2020, the team of Professor Guan Minxin from the School of Medicine, Institute of Genetics of Zhejiang University published the article titled as “PRICKLE3 linked to ATPase biogenesis manifested Leber’s hereditary optic neuropathy” in the Journal of Clinical Investigation . In this study, the mutation of \[…\] [Click here to view original web page at www.miragenews.com](https://www.miragenews.com/recent-study-offers-new-insights-on-a-hereditary-eye-disease/) **Categories:** Mitochondrial Disease News --- ### [First successful delivery of mitochondria to liver cells in animals](https://www.mitoaction.org/first-successful-delivery-of-mitochondria-to-liver-cells-in-animals/) **Published:** June 27, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > University of Connecticut researcher Dr. George Wu recently published a paper in the Journal of Gastroenterology and Hepatology outlining his successful experiment delivering mitochondria to liver cells. This groundbreaking experiment marks the first time researchers have ever successfully introduced mitochondria into specific cells in living animals. Mitochondria generate energy \[…\] [Click here to view original web page at www.sciencedaily.com](https://www.sciencedaily.com/releases/2020/06/200625122732.htm) **Categories:** Mitochondrial Disease News --- ### [Plant-based ERT May Hold Promise in Pompe Disease, Small Study Suggests](https://www.mitoaction.org/plant-based-ert-may-hold-promise-in-pompe-disease-small-study-suggests/) **Published:** May 22, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > A moss-derived type of enzyme replacement therapy (ERT) for Pompe disease may be more effective than the currently approved ERT in targeting muscle cells, according to a small study. Since the study focused on muscle cells grown in the lab, further research in a whole organism, such as a \[…\] [Click here to view original web page at pompediseasenews.com](https://pompediseasenews.com/2020/05/21/plant-based-ert-may-hold-promise-in-pompe-disease-small-study-suggests/) **Categories:** Mitochondrial Disease News --- ### [Gene Editing Seen to Restore Frataxin Level in Cells From Patients](https://www.mitoaction.org/gene-editing-seen-to-restore-frataxin-level-in-cells-from-patients/) **Published:** June 27, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > ADVANCE IN FREIDRICH’S ATAXIA RESEARCH: The CRISPR-Cas9 gene editing technique safely removed the gene expansion that causes Friedrich’s ataxia (FA), allowing for normal frataxin levels and more functional mitochondria in cells taken from patients, an early study reported. This work, and further experiments in mice, supports the potential of a stem cell approach to \[…\] [Click here to view original web page at friedreichsataxianews.com](https://friedreichsataxianews.com/2020/06/25/crispr-cas9-gene-editing-seen-to-restore-frataxin-levels-in-fa-patient-cells/) **Categories:** Mitochondrial Disease News --- ### [Problems with Mitochondria of Neurons May Underlie CMTX6, Study Finds](https://www.mitoaction.org/problems-with-mitochondria-of-neurons-may-underlie-cmtx6-study-finds/) **Published:** June 26, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > MITOCHONDRIA CONNECTION WITH CHARCOT-MARIE-TOOTH (CMT) DISEASE: Problems with energy production and mitochondria, the powerhouses of cells, may be the underlying cause of an X-linked form of Charcot-Marie-Tooth disease (CMT) called CMTX6 , a study in patient-derived motor neurons suggests. The study, “ Energy metabolism and mitochondrial defects in X-linked Charcot-Marie-Tooth (CMTX6) iPSC-derived motor neurons with \[…\] [Click here to view original web page at charcot-marie-toothnews.com](https://charcot-marie-toothnews.com/2020/06/26/problems-mitochondria-of-motor-neurons-may-underlie-cmtx6-study-says/) **Categories:** Mitochondrial Disease News --- ### [Reducing proton leak restores function in aging heart cells](https://www.mitoaction.org/reducing-proton-leak-restores-function-in-aging-heart-cells/) **Published:** December 21, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > ELAMPRETIDE RELATED: A drug to improve heart function, elamipretide, stanches proton leaks in aged heart cell mitochondria. Scientists have revealed a mechanism that causes heart cells to age and identified a drug that can rejuvenate them, according to a study published today in eLife . The drug is now in clinical \[…\] [Click here to view original web page at www.miragenews.com](https://www.miragenews.com/reducing-proton-leak-restores-function-in-aging-heart-cells/) **Categories:** Mitochondrial Disease News --- ### [Autism Spectrum Disorder May Be Caused by Defects in the Mitochondria of Brain Cells](https://www.mitoaction.org/autism-spectrum-disorder-may-be-caused-by-defects-in-the-mitochondria-of-brain-cells/) **Published:** February 4, 2021 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Early research shows how mild defects in the ‘batteries’ of cells in brain tissue can lead to behaviors similar to those of autism. Researchers at Children’s Hospital of Philadelphia (CHOP) have demonstrated that autism spectrum disorder (ASD) may be caused by defects in the mitochondria of brain cells. The \[…\] [Click here to view original web page at scitechdaily.com](https://scitechdaily.com/autism-spectrum-disorder-may-be-caused-by-defects-in-the-mitochondria-of-brain-cells/) **Categories:** Mitochondrial Disease News --- ### [Pediatric mitochondrial disease and COVID-19 FAQ](https://www.mitoaction.org/pediatric-mitochondrial-disease-and-covid-19-faq/) **Published:** February 4, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") What is pediatric mitochondrial disease? How does the COVID-19 pandemic affect children with this disease? Click [here](https://www.genome.gov/FAQ/Pediatric-mitochondrial-disease-and-COVID-19) to read the full article written by Dr. Peter McGuire at the NIH National Human Genome Research Institute. **Categories:** Mitochondrial Disease News --- ### [Coenzyme Q10 could treat mitochondrial diseases, colon cancer, thyroid carcinoma and Crohn's disease](https://www.mitoaction.org/coenzyme-q10-could-treat-mitochondrial-diseases-colon-cancer-thyroid-carcinoma-and-crohns-disease/) **Published:** January 22, 2021 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Graphic overview of the research. Credit: University of Granada Coenzyme Q10 (CoQ10) is a molecule essential for life that is synthesized in the cells of our organs and tissues, but is also acquired through diet Scientists from the University of Granada demonstrate for the first time that a CoQ10 \[…\] [Click here to view original web page at medicalxpress.com](https://medicalxpress.com/news/2021-01-coenzyme-q10-mitochondrial-diseases-colon.html) **Categories:** Mitochondrial Disease News --- ### [NIH scientists reveal how the brain may fuel intense neural communication](https://www.mitoaction.org/nih-scientists-reveal-how-the-brain-may-fuel-intense-neural-communication/) **Published:** October 6, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Results suggest retrieval of cellular powerplants via an energy feedback loop sustains communication. Intense neural conversations thought to underlie learning and memory may be fueled by an energy-sensing feedback loop. Scientist monitored energy levels in the form of ATP as neurons talked to each other. Sheng lab NINDS/NIH. What: \[…\] [Click here to view original web page at www.nih.gov](https://www.nih.gov/news-events/news-releases/nih-scientists-reveal-how-brain-may-fuel-intense-neural-communication) **Categories:** Mitochondrial Disease News --- ### [Cell-Type-Specific Transcriptomic Analysis in the Dorsolateral Prefrontal Cortex Reveals Distinct Mitochondrial Abnormalities in Schizophrenia and Bipolar Disorder](https://www.mitoaction.org/cell-type-specific-transcriptomic-analysis-in-the-dorsolateral-prefrontal-cortex-reveals-distinct-mitochondrial-abnormalities-in-schizophrenia-and-bipolar-disorder/) **Published:** December 1, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > INTERESTING RESULTS RE: GENE EXPRESSION INVOLVED IN MITOCHONDRIAL FUNCTION ESP. IN SCHIZOPHRENIA: Substantial evidence suggests that schizophrenia and bipolar disorder share common vulnerability factors, such as genetic, epigenetic, and environmental factors. In addition, both of these psychiatric illnesses show many overlapping phenotypes. Mitochondria are the major source of energy for neurons and are involved in brain development, Ca 2+ homeostasis, neurotransmission, \[…\] [Click here to view original web page at ajp.psychiatryonline.org](https://ajp.psychiatryonline.org/doi/10.1176/appi.ajp.2020.20101455) **Categories:** Mitochondrial Disease News --- ### [How a very 'sociable' protein can hold clues about Alzheimer's origin](https://www.mitoaction.org/how-a-very-sociable-protein-can-hold-clues-about-alzheimers-origin-2/) **Published:** December 16, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > AGING RELATED: Using the ESRF cryo-electron microscope and Small Angle X-ray Scattering at the ESRF’s beamline BM29, the researchers managed to decipher the role of ECSIT in mitochondrial activity. Credit: ESRF/Stef Candé An international team of scientists led by the ESRF, the European Synchrotron, have found how the ECSIT protein dictates \[…\] [Click here to view original web page at phys.org](https://phys.org/news/2020-12-sociable-protein-clues-alzheimer.html) **Categories:** Mitochondrial Disease News --- ### [Management Principles for Acute Illness in Patients With Medium-Chain Acyl-Coenzyme A Dehydrogenase Deficiency](https://www.mitoaction.org/management-principles-for-acute-illness-in-patients-with-medium-chain-acyl-coenzyme-a-dehydrogenase-deficiency/) **Published:** December 29, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > MCADD RELATED: Abstract Medium-chain acyl-coenzyme A dehydrogenase deficiency (MCADD) is a fatty acid oxidation disorder in which the patient is unable to break down fats to produce energy. This disorder places children at risk for metabolic decompensation during periods of stress, such as routine childhood illnesses. The intent of this clinical \[…\] [Click here to view original web page at pediatrics.aappublications.org](https://pediatrics.aappublications.org/content/early/2020/12/24/peds.2020-040303) **Categories:** Mitochondrial Disease News --- ### [Gene Therapy Injection in One Eye Improves Vision in Both](https://www.mitoaction.org/gene-therapy-injection-in-one-eye-improves-vision-in-both/) **Published:** December 29, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > LHON RELATED: Credit: Aline Berry/ Pixabay In a landmark phase 3 clinical trial, the international team, coordinated by Dr Patrick Yu-Wai-Man from the University of Cambridge and Dr José-Alain Sahel from the University of Pittsburgh and Institut de la Vision, Paris, successfully treated 37 patients suffering from Leber hereditary optic neuropathy \[…\] [Click here to view original web page at www.technologynetworks.com](https://www.technologynetworks.com/biopharma/news/gene-therapy-injection-in-one-eye-improves-vision-in-both-344027) **Categories:** Mitochondrial Disease News --- ### [Researchers find effective combination of therapies for managing mitochondrial disease](https://www.mitoaction.org/researchers-find-effective-combination-of-therapies-for-managing-mitochondrial-disease/) **Published:** March 3, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Study is first to demonstrate how one specific combinational therapy may provide measurable benefits to patients with mitochondrial respiratory chain disorders, which currently lack FDA-approved therapies CHILDREN’S HOSPITAL OF PHILADELPHIA Philadelphia, March 2, 2021 – Researchers from the Mitochondrial Medicine Frontier Program at Children’s Hospital of Philadelphia (CHOP) have demonstrated how one combination of therapies may be beneficial for patients with mitochondrial respiratory chain disorders. This preclinical research paves the way to develop more tailored treatment options for patients with inherited mitochondrial disease and acquired energy disorders. The findings emphasize the importance of rational therapeutic modeling to target specific cellular deficiencies and provide proper cellular nutrition as an effective means to manage mitochondrial disease. Click [here](https://www.eurekalert.org/pub_releases/2021-03/chop-rfe030221.php) to read the full article. **Categories:** Mitochondrial Disease News --- ### [Spaceflight Impairs Mitochondrial Function, New Research Shows](https://www.mitoaction.org/spaceflight-impairs-mitochondrial-function-new-research-shows/) **Published:** November 27, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > MITOCHONDRIA OF MICE MIGRAVITY MEASURED!!!: Critical parts of a cell’s energy production machinery, the mitochondria, can be made dysfunctional due to changes in gravity, radiation exposure and other factors, according to new research. Spaceflight is known to impose changes on human physiology with unknown molecular etiologies. To reveal these causes, da Silveira et al. \[…\] [Click here to view original web page at www.sci-news.com](http://www.sci-news.com/medicine/spaceflight-mitochondrial-function-09092.html) **Categories:** Mitochondrial Disease News --- ### [Researchers discover novel mechanism by which cells turn over mitochondria](https://www.mitoaction.org/researchers-discover-novel-mechanism-by-which-cells-turn-over-mitochondria/) **Published:** December 21, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > PARKINSON’S RELATED, A LOOK AT MITOCHONDRIAL TUNROVER: Mitochondria are cellular organelles that generate most of the energy cells need to function, and thus play an important role in maintaining cell health. In a new study, researchers from Osaka University discovered a novel mechanism by which cells turn over mitochondria and contribute to cellular maintenance. They further \[…\] [Click here to view original web page at www.news-medical.net](https://www.news-medical.net/news/20201221/Researchers-discover-novel-mechanism-by-which-cells-turn-over-mitochondria.aspx) **Categories:** Mitochondrial Disease News --- ### [High-Throughput Mitochondria Transfer Device Developed](https://www.mitoaction.org/high-throughput-mitochondria-transfer-device-developed/) **Published:** January 7, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Researchers from the UCLA Jonsson Comprehensive Cancer Center say have developed a simple, high-throughput method for transferring isolated mitochondria and their associated mitochondrial DNA into mammalian cells. > > This approach enables researchers to tailor a key genetic component of cells, to study and potentially treat debilitating diseases such as cancer, diabetes, and metabolic disorders. > > The team published its study, “[Pressure-Driven Mitochondrial Transfer Pipeline Generates Mammalian Cells of Desired Genetic Combinations and Fates](https://www.cell.com/cell-reports/fulltext/S2211-1247(20)31551-5?_returnURL=https%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS2211124720315515%3Fshowall%3Dtrue)” in *Cell Reports*, and it describes how the new UCLA-developed device, called MitoPunch, transfers mitochondria into 100,000 or more recipient cells simultaneously, which is a significant improvement from existing mitochondrial transfer technologies. The device is part of the continued effort by UCLA scientists to understand mutations in mitochondrial DNA by developing controlled, manipulative approaches that improve the function of human cells or model human mitochondrial diseases better. Click [here](https://www.genengnews.com/news/high-throughput-mitochondria-transfer-device-developed/) to read the full article. **Categories:** Mitochondrial Disease News --- ### [Metabolism May Play Role in Recurrent Major Depression](https://www.mitoaction.org/metabolism-may-play-role-in-recurrent-major-depression/) **Published:** January 13, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Researchers find that metabolites — small molecules produced by cellular activities — appear to predict risk of recurring depression and may be a new diagnostic tool. To read the full article, click [here](https://health.ucsd.edu/news/releases/Pages/2021-01-12-metabolism-may-play-role-in-recurrent-major-depression.aspx). **Categories:** Mitochondrial Disease News --- ### [Decades-Old Mitochondrial Mystery Could Lead To New Disease Treatments](https://www.mitoaction.org/decades-old-mitochondrial-mystery-could-lead-to-new-disease-treatments/) **Published:** September 19, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Penn Medicine researchers have solved a decades-old mystery around a key molecule fueling the power plant of cells that could be exploited to find new ways to treat diseases, from neurodegenerative disorders to cancer. Reporting in a new study published today in Nature, researchers from the Department of Physiology \[…\] [Click here to view original web page at www.worldhealth.net](https://www.worldhealth.net/news/decades-old-mitochondrial-mystery-could-lead-new-disease-treatments/) **Categories:** Mitochondrial Disease News --- ### ['Cheater mitochondria' may profit from cellular stress coping mechanisms](https://www.mitoaction.org/cheater-mitochondria-may-profit-from-cellular-stress-coping-mechanisms/) **Published:** September 27, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > TECHNICAL ARTICLE: Cheating mitochondria may take advantage of cellular mechanisms for coping with food scarcity in a simple worm to persist, even though this can reduce the worm’s wellbeing. These findings, published today in eLife , may help shed light on the evolution of cheating and cooperative behaviours within different organisms. \[…\] [Click here to view original web page at www.sciencedaily.com](https://www.sciencedaily.com/releases/2020/09/200922135732.htm) **Categories:** Mitochondrial Disease News --- ### [New drug offers hope for young boys with Duchenne muscular dystrophy](https://www.mitoaction.org/new-drug-offers-hope-for-young-boys-with-duchenne-muscular-dystrophy/) **Published:** September 27, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > A new drug offers hope for young boys with the progressive neuromuscular disease Duchenne muscular dystrophy (DMD) by potentially offering an alternative to high-dose glucocorticoids that have significant side effects. Interim results from a 24-month clinical trial at Duke Health and other institutions suggest that the drug, vamorolone, may \[…\] [Click here to view original web page at www.news-medical.net](https://www.news-medical.net/news/20200925/New-drug-offers-hope-for-young-boys-with-Duchenne-muscular-dystrophy.aspx) **Categories:** Mitochondrial Disease News --- ### [How Covid-19 is changing rare diseases research](https://www.mitoaction.org/how-covid-19-is-changing-rare-diseases-research/) **Published:** March 11, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ### While Covid has made many aspects of living with a rare disease more difficult, it has inspired policies and techniques that could help rare disease research progress more smoothly both during and after the pandemic. By [KHADIJAH M. SILVER](https://medcitynews.com/author/ksilver/) Mar 9, 2021 at 5:13 PM ![](https://medcitynews.com/uploads/2020/08/GettyImages-1204793213-e1597416006248.jpg) Twenty years after researchers published their first discoveries associated with human genome sequencing, policymakers are fighting to overcome obstacles that hobble the potential of genetic medicine to recognize, diagnose and cure rare diseases. While Covid has made living with rare disease harder than ever, it has also broken down some previously intractable cultural norms in the life sciences. Advocates hope those changes stick so they can find long-overdue cures. To read the full article, click [here](https://medcitynews.com/2021/03/how-covid-19-is-changing-rare-diseases-research/?rf=1). **Categories:** Mitochondrial Disease News --- ### [Inside mitochondria and their fascinating genome](https://www.mitoaction.org/inside-mitochondria-and-their-fascinating-genome/) **Published:** September 28, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > EPFL professor and biophysicist Suliana Manley with student Sofia Zaganelli and a super-resolution microscope. Credit: EPFL / Alain Herzog Mitochondria are present in all eukaryotic cells: in our cells, in mammalian cells, in the cells of plants and even of fungi. Mitochondria produce energy for cells to function as \[…\] [Click here to view original web page at phys.org](https://phys.org/news/2020-09-mitochondria-fascinating-genome.html) **Categories:** Mitochondrial Disease News --- ### [Gut Microbiome Analysis in Autistic Children Points to Detoxification Deficiencies](https://www.mitoaction.org/gut-microbiome-analysis-in-autistic-children-points-to-detoxification-deficiencies/) **Published:** October 28, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > REQUIRES EMAIL SIGN UP TO READ ARTICLE: NEW YORK – New research suggests children with autism spectrum disorder (ASD) may have altered gut microbial community functions that impact the detoxification processes taking place in the intestine — changes that appear to have downstream effects on mitochondrial function. [Click here to view original web page at www.genomeweb.com](https://www.genomeweb.com/sequencing/gut-microbiome-analysis-autistic-children-points-detoxification-deficiencies) **Categories:** Mitochondrial Disease News --- ### [Helping Nerve Cells Clear Damaged Mitochondria May Treat Parkinson’s, Study Finds](https://www.mitoaction.org/helping-nerve-cells-clear-damaged-mitochondria-may-treat-parkinsons-study-finds/) **Published:** November 5, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Parkin protein deficiency — which is associated with early onset Parkinson’s disease — is only detrimental when dopamine -producing neurons undergo a metabolic switch as they mature, a new study reported. Under such conditions, nerve cells lacking in parkin cannot effectively recycle damaged mitochondria (the cells’ powerhouses, or energy \[…\] [Click here to view original web page at parkinsonsnewstoday.com](https://parkinsonsnewstoday.com/2020/11/04/helping-nerve-cells-clear-damaged-mitochondria-may-treat-parkinsons-study/) **Categories:** Mitochondrial Disease News --- ### [Genetic mutation may accelerate heart function decline in DMD patients](https://www.mitoaction.org/genetic-mutation-may-accelerate-heart-function-decline-in-dmd-patients/) **Published:** November 17, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > A mutation in the gene that causes cystic fibrosis may accelerate heart function decline in those with Duchenne muscular dystrophy (DMD), a new study by UT Southwestern researchers suggests. The findings, published online recently in the Journal of the American Heart Association , could help doctors develop new strategies \[…\] [Click here to view original web page at www.news-medical.net](https://www.news-medical.net/news/20201104/Genetic-mutation-may-accelerate-heart-function-decline-in-DMD-patients.aspx) **Categories:** Mitochondrial Disease News --- ### [Researchers Find Impaired Mitochondrial and Metabolic Function in COVID-19 Patients](https://www.mitoaction.org/researchers-find-impaired-mitochondrial-and-metabolic-function-in-covid-19-patients/) **Published:** November 20, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > American Physiological Society (APS) Newswise — New research published ahead of print in the American Journal of Physiology-Cell Physiology explores the role of mitochondrial function and related metabolic changes in the inflammatory response seen in people with COVID-19, the disease caused by the SARS-CoV-2 virus. Dysfunction of mitochondria, the \[…\] [Click here to view original web page at www.newswise.com](https://www.newswise.com/coronavirus/researchers-find-impaired-mitochondrial-and-metabolic-function-in-covid-19-patients) **Categories:** Mitochondrial Disease News --- ### [Structure of the enzyme behind the world's smallest turbine, solved](https://www.mitoaction.org/structure-of-the-enzyme-behind-the-worlds-smallest-turbine-solved/) **Published:** September 23, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Rows of ATP synthase as they would form on the ridges of mitochondrial membranes. ATP, ADP and lipids are shown in bright colours. Credit: Gergely Pinke / IST Austria The chemical ATP, adenosine triphosphate, is the fuel that powers all life. Despite ATP’s central role, the structure of the \[…\] [Click here to view original web page at phys.org](https://phys.org/news/2020-09-enzyme-world-smallest-turbine.html) **Categories:** Mitochondrial Disease News --- ### [Overactivation of fructose made in the brain may drive Alzheimer's disease](https://www.mitoaction.org/overactivation-of-fructose-made-in-the-brain-may-drive-alzheimers-disease/) **Published:** September 27, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > New research released from the University of Colorado Anschutz Medical Campus proposes that Alzheimer’s disease may be driven by the overactivation of fructose made in the brain. The study was published in the Frontiers in Aging Neuroscience and outlined the hypothesis that Alzheimer’s disease is driven largely by Western \[…\] [Click here to view original web page at www.news-medical.net](https://www.news-medical.net/news/20200923/Overactivation-of-fructose-made-in-the-brain-may-drive-Alzheimers-disease.aspx) **Categories:** Mitochondrial Disease News --- ### [Mitochondrial Retrieval Is Critical to Sustaining Neuron Communication](https://www.mitoaction.org/mitochondrial-retrieval-is-critical-to-sustaining-neuron-communication/) **Published:** October 13, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > The neuron is the basic working unit of the brain, and recent studies are beginning to reveal how neurons perform the complex computations that underlie our behavior. The latest study by the National Institutes of Health (NIH) demonstrates how some synapses find the energy to support neural communication thought \[…\] [Click here to view original web page at www.genengnews.com](https://www.genengnews.com/news/mitochondrial-retrieval-is-critical-to-sustaining-neuron-communication/) **Categories:** Mitochondrial Disease News --- ### [Teachings from COVID‐19 and aging—An oxidative process](https://www.mitoaction.org/teachings-from-covid‐19-and-aging-an-oxidative-process-2/) **Published:** October 17, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > ARTICLE PROFILES THE ROLE OXIDATIVE STRESS AND ANTIOXIDANTS IN TREATMENT: > > 1 INTRODUCTION As of June 2020, the COVID‐19 pandemic has totaled over 9 000 000 cases and 470 000 deaths globally, including over 2 290 000 and 120 000 cases and deaths, respectively, in the United States of America. 1 Infection with SARS‐CoV‐2, the pathogenic agent of COVID‐19, has \[…\] [Click here to view original web page at onlinelibrary.wiley.com](https://onlinelibrary.wiley.com/doi/full/10.1111/jocd.13751) **Categories:** Mitochondrial Disease News --- ### [Stress hormones and mitochondrial health determine who will lose muscle after surgery](https://www.mitoaction.org/stress-hormones-and-mitochondrial-health-determine-who-will-lose-muscle-after-surgery/) **Published:** October 28, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > It’s common for people to lose muscle after surgery. Such degradation can result in longer recovery periods and increased risk of injury or death. But people often experience different degrees of muscle loss — even after undergoing the exact same procedure. Understanding this variation may help to identify high-risk \[…\] [Click here to view original web page at massivesci.com](https://massivesci.com/notes/mitochondria-cortisol-stress-genetics-surgery-recovery-muscle/) **Categories:** Mitochondrial Disease News --- ### [Can Red Light Exposure Improve Eyesight?](https://www.mitoaction.org/can-red-light-exposure-improve-eyesight/) **Published:** July 25, 2022 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Looking into a deep red light for 3 minutes each day may significantly improve declining eyesight, according to a study published in Journals of Gerontology. Looking into a deep red light for 3 minutes each day may significantly improve declining eyesight , according to a study published in Journals \[…\] [Click here to view original web page at www.ajmc.com](https://www.ajmc.com/newsroom/can-red-light-exposure-improve-eyesight) **Categories:** Mitochondrial Disease News --- ### [New vitamin K-based drug shows promise against medication-resistant epilepsy](https://www.mitoaction.org/new-vitamin-k-based-drug-shows-promise-against-medication-resistant-epilepsy/) **Published:** July 25, 2022 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > IMAGE: Dr. James Chou (left) and Dr. Sherine Chan (right) of the Medical University of South Carolina. view more Credit: Sarah Pack, Medical University of South Carolina In the cover article of the June 11 issue of the Journal of Medicinal Chemistry , a team of researchers at the \[…\] [Click here to view original web page at www.eurekalert.org](https://www.eurekalert.org/pub_releases/2020-07/muos-nvk070320.php) **Categories:** Mitochondrial Disease News --- ### [Toxic Metal Air Pollution Nanoparticles Found Inside the "Powerhouses" of Heart Cells of City Dwellers](https://www.mitoaction.org/toxic-metal-air-pollution-nanoparticles-found-inside-the-powerhouses-of-heart-cells-of-city-dwellers/) **Published:** July 25, 2022 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Credit: Pixabay Toxic metallic air pollution nanoparticles are getting inside the crucial, energy-producing structures within the hearts of people living in polluted cities, causing cardiac stress – a new study confirms. Using state-of-the-art electron microscopy, scientists are now able to show for the first time that tiny metal nanoparticles \[…\] [Click here to view original web page at www.technologynetworks.com](https://www.technologynetworks.com/tn/news/toxic-metal-air-pollution-nanoparticles-found-inside-the-powerhouses-of-heart-cells-of-city-337039) **Categories:** Mitochondrial Disease News --- ### [New Study Proposes That Alzheimer's Disease May Be Driven by Fructose in the Brain](https://www.mitoaction.org/new-study-proposes-that-alzheimers-disease-may-be-driven-by-fructose-in-the-brain/) **Published:** July 25, 2022 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Credit: Photo by Joshua Hoehne on Unsplash New research released from the University of Colorado Anschutz Medical Campus proposes that Alzheimer’s disease may be driven by the overactivation of fructose made in the brain. The study was published in the Frontiers in Aging Neuroscience and outlined the hypothesis that \[…\] [Click here to view original web page at www.technologynetworks.com](https://www.technologynetworks.com/tn/news/new-study-proposes-that-alzheimers-disease-may-be-driven-by-fructose-in-the-brain-340775) **Categories:** Mitochondrial Disease News --- ### [CHOP Researchers Develop New Clinical Diagnostic Test to Identify Genetic Sources of Mitochondrial Disease](https://www.mitoaction.org/chop-researchers-develop-new-clinical-diagnostic-test-to-identify-genetic-sources-of-mitochondrial-disease/) **Published:** January 26, 2022 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![Children's Hospital of Philadelphia](https://www.newswise.com/images/institutions/logos/chp-logo.jpg) ##### CHOP Researchers Develop New Clinical Diagnostic Test to Identify Genetic Sources of Mitochondrial Disease ###### *New test analyzes mitochondrial DNA to find and quantify certain variations and deletions, providing a useful diagnostic tool that helps guide treatment* 25-Jan-2022 9:50 AM EST, by[ Children’s Hospital of Philadelphia](https://www.newswise.com/institutions/newsroom/235/)[Contact Patient Services](http://www.chop.edu/patients-and-visitors) **Newswise — Philadelphia, January 25, 2022 –** Researchers from the [Mitochondrial Medicine Frontier Program](https://www.chop.edu/centers-programs/mitochondrial-disease-clinical-center) at [Children’s Hospital of Philadelphia (CHOP)](https://www.chop.edu/) have developed a comprehensive sequencing test specifically for mitochondrial DNA (mtDNA). This new clinical diagnostic test, launched in the [Division of Genomics Diagnostics (DGD)](https://www.chop.edu/centers-programs/division-genomic-diagnostics) at CHOP, provides important information as to whether and to what level variations in the mtDNA are present in different tissues from a patient with suspected mitochondrial disease, leading to more precise diagnosis and more personalized treatment options. The findings were recently published in the journal [*Molecular Genetics and Metabolism*](https://www.sciencedirect.com/science/article/pii/S1096719221011914). Mitochondrial disease describes a heterogeneous group of energy disorders. These disorders can be caused by genetic mutations found in either the body’s nuclear DNA, located in the nucleus of our cells, or the mtDNA, a separate chromosome with many repeating copies found specifically within our mitochondria. The mtDNA genome has many unique features and cannot be reliably studied or sequenced through the same methods as nuclear DNA. There are several types of pathogenic mtDNA variants that exist, including variants that might not affect a pregnant woman but could be passed down through her egg to her child. The research team wanted to develop a highly accurate and sensitive molecular method that can simultaneously detect single nucleotide variants (a single variation at a particular spot of the genome) and large-scale mtDNA deletions (LSMDs). They came up with such a test, called “MitoGenome,” which they have launched as a first-tier clinical diagnostic test for patients with suspected mitochondrial disease. “Extensive teamwork over years among the CHOP Mitochondrial Medicine clinical and laboratory teams has yielded an improved clinical diagnostic test for sensitively detecting mtDNA mutations and large-scale deletions, providing simultaneous analyses in both children and mothers, as well as highly reliable measurements of heteroplasmy levels that are necessary to accurately interpret whether the mtDNA variants are causing the individual’s often complex health problems,” said [Marni J. Falk, MD](https://www.chop.edu/doctors/falk-marni), Executive Director of the CHOP Mitochondrial Medicine Frontier Program and Distinguished Chair in the CHOP Department of Pediatrics. In this study, MitoGenome tests were performed on 428 samples from 394 patients with suspected or confirmed mitochondrial disease, drawing upon a wide patient base that experienced diverse healthcare problems. The positive yield from the study was 11%, which was 100% accurate in validating the causal etiology in known mitochondrial disease cases with previously known mtDNA mutations or deletions. Among all patients found to have mtDNA mutations, 34 had pathogenic or likely pathogenic single nucleotide variants, 8 patients had single LSMDs, and 3 patients had multiple LSMDs. The tool was assessed to be a highly accurate and comprehensive diagnostic method for detecting sequence variants present at levels as low as 1% and LSMDs present at low levels below 10%. Because of its sensitivity and accuracy, the researchers say the test can provide this important information using non-invasive samples like blood, saliva, and urine, making it easier for families to participate. However, muscle samples are still the preferred tissue sample type for this test to evaluate LSMDs in some mitochondrial disease disorders that present with muscle problems, such as in a rare form of mitochondrial disease known as Kearns-Sayre syndrome. This study was supported by the CHOP Mitochondrial Medicine Frontier Program, the National Institutes of Health (NS-021328, MH-108592,OD-010944, U41-HG008634,U24-HD093483) and the U.S. Department of Defense (W81XWH-16-1-0401, W81XWH-21-1-0128). Wang et al, “Advanced approach for comprehensive mtDNA genome testing in mitochondrial disease.” *Mol Genet Metab.* Online December 18, 2021. DOI: 10.1016/j.ymgme.2021.12.006. **About Children’s Hospital of Philadelphia:** Children’s Hospital of Philadelphia was founded in 1855 as the nation’s first pediatric hospital. Through its long-standing commitment to providing exceptional patient care, training new generations of pediatric healthcare professionals, and pioneering major research initiatives, Children’s Hospital has fostered many discoveries that have benefited children worldwide. Its pediatric research program is among the largest in the country. In addition, its unique family-centered care and public service programs have brought the 564-bed hospital recognition as a leading advocate for children and adolescents. For more information, visit [http://www.chop.edu](http://www.chop.edu/) **[SEE ORIGINAL STUDY](https://www.sciencedirect.com/science/article/pii/S1096719221011914)** To view the original article, click [here](https://www.newswise.com/articles/chop-researchers-develop-new-clinical-diagnostic-test-to-identify-genetic-sources-of-mitochondrial-disease). **Categories:** Mitochondrial Disease News --- ### [New method reveals how Parkinson's protein damages cell membranes](https://www.mitoaction.org/new-method-reveals-how-parkinsons-protein-damages-cell-membranes/) **Published:** July 25, 2022 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Back to Biology In sufferers of Parkinson’s disease, clumps of α-synuclein (alpha-synuclein), sometimes known as the ‘Parkinson’s protein’, are found in the brain. These destroy cell membranes, eventually resulting in cell death. Now, a new method developed at Chalmers University of Technology, Sweden, reveals how the composition of cell \[…\] [Click here to view original web page at www.labnews.co.uk](http://www.labnews.co.uk/article/2030690/new-method-reveals-how-parkinsons-protein-damages-cell-membranes) **Categories:** Mitochondrial Disease News --- ### [Metabolic Rewiring: Nerve Cells With Energy Saving Program](https://www.mitoaction.org/metabolic-rewiring-nerve-cells-with-energy-saving-program/) **Published:** July 25, 2022 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Microscopy image of mouse neurons (grey), with mitochondria labeled in red and green. Credit: MPI f. Biology of Ageing/ E. Motori Thanks to a metabolic adjustment, the cells can remain functional despite damage to the mitochondria. Mitochondria are the power plants of our cells and play an important role \[…\] [Click here to view original web page at scitechdaily.com](https://scitechdaily.com/metabolic-rewiring-nerve-cells-with-energy-saving-program/) **Categories:** Mitochondrial Disease News --- ### [A glimmer of hope: Virginia Tech researcher creates cell lines to help treat mitochondrial diseases in children](https://www.mitoaction.org/a-glimmer-of-hope-virginia-tech-researcher-creates-cell-lines-to-help-treat-mitochondrial-diseases-in-children/) **Published:** July 17, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The mitochondrion has garnered quite the reputation for its role as the “powerhouse of the cell.” These tiny, but mighty organelles play various life-sustaining roles, from powering our own cells and organs to fueling chemical and biological processes. But when they aren’t working properly, a number of rare diseases can occur. Mitochondrial diseases are a group of debilitating genetic disorders that affect one in 5,000 people throughout the world, most of them being children. Along with these diseases come a variety of health concerns including, but not limited to, heart disease, developmental and cognitive disabilities, respiratory issues, poor growth, and even premature death. As of this moment, there is no cure. But recent work published in the journals [Mitochondrion](https://pubmed.ncbi.nlm.nih.gov/33744462/) and [BMC Molecular and Cell Biology](https://pubmed.ncbi.nlm.nih.gov/34118887/) by Aloka Abey Bandara, a research associate professor in the [Department of Biomedical Sciences and Pathobiology](https://vetmed.vt.edu/departments/biomedical-sciences-and-pathobiology.html) in the [Virginia-Maryland College of Veterinary Medicine](https://vetmed.vt.edu/), and his team offers mitochondrial disease patients and their parents a glimmer of hope. Click [here](https://vtx.vt.edu/articles/2021/07/fralinlifesci-cell-lines-mitochondrial-disease-in-children.html) for the full article. **Categories:** Mitochondrial Disease News --- ### [CHOP Researchers Develop New Clinical Diagnostic Test to Identify Genetic Sources of Mitochondrial Disease](https://www.mitoaction.org/chop-researchers-develop-new-clinical-diagnostic-test-to-identify-genetic-sources-of-mitochondrial-disease-2/) **Published:** January 27, 2022 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Published on Jan 25, 2022 in [CHOP News](https://www.chop.edu/publications/chop-news) Researchers from the [Mitochondrial Medicine Frontier Program](https://www.chop.edu/centers-programs/mitochondrial-disease-clinical-center) at Children’s Hospital of Philadelphia (CHOP) have developed a comprehensive sequencing test specifically for mitochondrial DNA (mtDNA). This new clinical diagnostic test, launched in the [Division of Genomic Diagnostics (DGD)](https://www.chop.edu/centers-programs/division-genomic-diagnostics) at CHOP, provides important information as to whether and to what level variations in the mtDNA are present in different tissues from a patient with suspected mitochondrial disease, leading to more precise diagnosis and more personalized treatment options. The findings were recently published in the journal [*Molecular Genetics and Metabolism*](https://www.sciencedirect.com/science/article/pii/S1096719221011914). Mitochondrial disease describes a heterogeneous group of energy disorders. These disorders can be caused by genetic mutations found in either the body’s nuclear DNA, located in the nucleus of our cells, or the mtDNA, a separate chromosome with many repeating copies found specifically within our mitochondria. The mtDNA genome has many unique features and cannot be reliably studied or sequenced through the same methods as nuclear DNA. ![Marni Falk](https://www.chop.edu/sites/default/files/styles/3_4_portrait/public/falk-marni-180x240_2.jpg?itok=eunKcapv "Marni Falk") Marni J. Falk, MDThere are several types of pathogenic mtDNA variants that exist, including variants that might not affect a pregnant woman but could be passed down through her egg to her child. The research team wanted to develop a highly accurate and sensitive molecular method that can simultaneously detect single nucleotide variants (a single variation at a particular spot of the genome) and large-scale mtDNA deletions (LSMDs). They came up with such a test, called “MitoGenome,” which they have launched as a first-tier clinical diagnostic test for patients with suspected mitochondrial disease. “Extensive teamwork over years among the CHOP Mitochondrial Medicine clinical and laboratory teams has yielded an improved clinical diagnostic test for sensitively detecting mtDNA mutations and large-scale deletions, providing simultaneous analyses in both children and mothers, as well as highly reliable measurements of heteroplasmy levels that are necessary to accurately interpret whether the mtDNA variants are causing the individual’s often complex health problems,” said [Marni J. Falk, MD](https://www.chop.edu/doctors/falk-marni), Executive Director of the CHOP Mitochondrial Medicine Frontier Program and Distinguished Chair in the CHOP [Department of Pediatrics](https://www.chop.edu/centers-programs/department-pediatrics). In this study, MitoGenome tests were performed on 428 samples from 394 patients with suspected or confirmed mitochondrial disease, drawing upon a wide patient base that experienced diverse healthcare problems. The positive yield from the study was 11%, which was 100% accurate in validating the causal etiology in known mitochondrial disease cases with previously known mtDNA mutations or deletions. Among all patients found to have mtDNA mutations, 34 had pathogenic or likely pathogenic single nucleotide variants, 8 patients had single LSMDs, and 3 patients had multiple LSMDs. The tool was assessed to be a highly accurate and comprehensive diagnostic method for detecting sequence variants present at levels as low as 1% and LSMDs present at low levels below 10%. Because of its sensitivity and accuracy, the researchers say the test can provide this important information using non-invasive samples like blood, saliva, and urine, making it easier for families to participate. However, muscle samples are still the preferred tissue sample type for this test to evaluate LSMDs in some mitochondrial disease disorders that present with muscle problems, such as in a rare form of mitochondrial disease known as Kearns-Sayre syndrome. This study was supported by the CHOP Mitochondrial Medicine Frontier Program, the National Institutes of Health (NS-021328, MH-108592,OD-010944, U41-HG008634,U24-HD093483) and the U.S. Department of Defense (W81XWH-16-1-0401, W81XWH-21-1-0128). Wang et al, “Advanced approach for comprehensive mtDNA genome testing in mitochondrial disease.” *Mol Genet Metab*. Online December 18, 2021. DOI: 10.1016/j.ymgme.2021.12.006. **Contact:** Ben Leach, The Children’s Hospital of Philadelphia, 267-426-2857 or To read the original article, click [here](https://www.chop.edu/news/chop-researchers-develop-new-clinical-diagnostic-test-identify-genetic-sources-mitochondrial) to visit the CHOP website. **Categories:** Mitochondrial Disease News --- ### [Mitochondrial Changes Could Be Key To Human Health Problems In Space](https://www.mitoaction.org/mitochondrial-changes-could-be-key-to-human-health-problems-in-space/) **Published:** July 25, 2022 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > Astronauts go through some pretty intense physical training, and there’s a good reason for that. Space is really tough on the human body, and scientists may just have found out why. There are a whole range of health issues that can develop from spending lengthy time in space, including \[…\] [Click here to view original web page at www.unilad.co.uk](https://www.unilad.co.uk/technology/mitochondrial-changes-could-be-key-to-human-health-problems-in-space/) **Categories:** Mitochondrial Disease News --- ### [Genetic treatment plus exercise reverses fatigue in mice with muscle wasting disease](https://www.mitoaction.org/genetic-treatment-plus-exercise-reverses-fatigue-in-mice-with-muscle-wasting-disease-2/) **Published:** July 25, 2022 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > BOSTON – Adding exercise to a genetic treatment for myotonic dystrophy type 1 (DM1) was more effective at reversing fatigue than administering the treatment alone in a study using a mouse model of the disease. In fact, exercise alone provided some benefit whereas the genetic treatment alone did not. \[…\] [Click here to view original web page at www.eurekalert.org](https://www.eurekalert.org/pub_releases/2020-11/mgh-gtp113020.php) **Categories:** Mitochondrial Disease News --- ### [New research leads to understanding of why mutations in a gene leads to mitochondrial disease](https://www.mitoaction.org/new-research-leads-to-understanding-of-why-mutations-in-a-gene-leads-to-mitochondrial-disease/) **Published:** April 29, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Monash University researchers have uncovered for the first time the reason mutations in a particular gene lead to mitochondrial disease. The finding, published in *PNAS* journal and led by [Professor Mike Ryan](https://www.monash.edu/discovery-institute/ryan-lab) from Monash University’s Biomedicine Discovery Institute, shows that a gene responsible for causing loss of vision and hearing, TMEM126A, makes a protein that helps build an important energy generator in mitochondria. So, if this gene is defective, it reduces mitochondrial function and impairs energy production, uncovering why mutations lead to the disease. Mitochondria are critical structures within living cells that play a central role in energy conversion and their job is to process oxygen and take in the sugars and proteins from the food we eat to produce the energy our bodies need to function properly. Mitochondria produce 90 per cent of the energy our body needs to function. Click [here](https://www.monash.edu/discovery-institute/news-and-events/news/2021-articles/new-research-leads-to-understanding-of-why-mutations-in-a-gene-leads-to-mitochondrial-disease) to read the full article. **Categories:** Mitochondrial Disease News --- ### [Muscle Weakness Tied to Poor Mitochondria Function](https://www.mitoaction.org/muscle-weakness-tied-to-poor-mitochondria-function/) **Published:** May 18, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Poorly working mitochondria — small energy-producing cell compartments — may drive muscle weakness or wasting in a new mouse model of [porphyria](https://porphyrianews.com/what-is-porphyria/), a study suggests. “In some cases, muscle atrophy \[is\] present in porphyria; however, the underlying mechanism is still unknown,” its authors wrote. These findings may therefore provide new insights into the causes of the disease. ![Muscle weakness](https://porphyrianews.com/wp-content/uploads/2019/09/mouse-2.jpg) The study, “[Muscle atrophy induced by overexpression of ALAS2 is related to muscle mitochondrial ](https://skeletalmusclejournal.biomedcentral.com/articles/10.1186/s13395-021-00263-8)0[dysfunction](https://skeletalmusclejournal.biomedcentral.com/articles/10.1186/s13395-021-00263-8),” was published in the journal *[Skeletal Muscle](https://skeletalmusclejournal.biomedcentral.com/).* A a team of researchers in China used genetically modified, or transgenic, mice in which ALAS2 was produced (expressed) in amounts larger than normal. ALAS2 — short for delta-aminolevulinate synthase 2 — is an enzyme involved in an early step of heme production, which is disrupted in all forms of porphyria. Heme is a molecule that enables red blood cells to transport oxygen throughout the body. Click [here](https://porphyrianews.com/2021/05/12/muscle-weakness-mitochondria-porphyria-mice/) to read the full article. **Categories:** Mitochondrial Disease News --- ### [Vitamin D Deficiency Can Impair Muscle Function](https://www.mitoaction.org/vitamin-d-deficiency-can-impair-muscle-function/) **Published:** November 3, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Vitamin D deficiency may impair muscle function due to a reduction in energy production in the muscles, according to a mouse study published in the *Journal of Endocrinology*. Vitamin D deficient mice were found to have impaired muscle mitochondrial function, which may have implications for muscle function, performance, and recovery. This may suggest that preventing vitamin D deficiency in older adults could help maintain better muscle strength and function and reduce age-related muscle deterioration, but further studies are needed to confirm this. Vitamin D is a hormone well known to be important for maintaining bone health and preventing rickets and osteoporosis. In recent years, vitamin D deficiency has been reported to be as prevalent as 40% in European populations and linked to increased risk for several conditions, including COVID-19, cancer, and diabetes. Although these studies report association rather than causation, the benefits of vitamin D supplementation are now a major subject of health debate. Multiple studies have also linked low vitamin D levels to poor muscle strength, particularly in older people. Skeletal muscle enables us to move voluntarily and perform everyday activities. It is essential that they have enough energy to power these movements. Specialized organs in cells, called mitochondria, convert nutrients into energy to meet this demand. Previous studies indicate that impaired muscle strength in people with vitamin D deficiency may be linked to impaired muscle mitochondrial function. Determining the role of vitamin D in muscle performance of older people is also difficult, as they may suffer from a number of pre-existing health conditions that can also affect their vitamin D status. Therefore, previous studies have been unable to determine how vitamin D may directly affect muscle performance. Click [here](https://leakherald.com/vitamin-d-deficiency-can-impair-muscle-function/) to read the full article. **Categories:** Mitochondrial Disease News --- ### [Long-term study of gene therapy technique in monkeys finds no adverse health effects](https://www.mitoaction.org/long-term-study-of-gene-therapy-technique-in-monkeys-finds-no-adverse-health-effects/) **Published:** July 25, 2022 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > A decade after the birth of the first primates born with the aid of a gene therapy technique designed to prevent inherited mitochondrial disease, a careful study of the monkeys and their offspring reveals no adverse health effects. Led by scientists at Oregon Health & Science University, the study \[…\] [Click here to view original web page at www.eurekalert.org](https://www.eurekalert.org/pub_releases/2020-12/ohs-lso120720.php) **Categories:** Mitochondrial Disease News --- ### [Use of whole genome sequencing to determine genetic basis of suspected mitochondrial disorders: cohort study](https://www.mitoaction.org/use-of-whole-genome-sequencing-to-determine-genetic-basis-of-suspected-mitochondrial-disorders-cohort-study/) **Published:** November 8, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ## Abstract **Objective** To determine whether whole genome sequencing can be used to define the molecular basis of suspected mitochondrial disease. **Design** Cohort study. **Setting** National Health Service, England, including secondary and tertiary care. **Participants** 345 patients with suspected mitochondrial disorders recruited to the 100 000 Genomes Project in England between 2015 and 2018. **Intervention** Short read whole genome sequencing was performed. Nuclear variants were prioritised on the basis of gene panels chosen according to phenotypes, ClinVar pathogenic/likely pathogenic variants, and the top 10 prioritised variants from Exomiser. Mitochondrial DNA variants were called using an in-house pipeline and compared with a list of pathogenic variants. Copy number variants and short tandem repeats for 13 neurological disorders were also analysed. American College of Medical Genetics guidelines were followed for classification of variants. **Main outcome measure** Definite or probable genetic diagnosis. **Results** A definite or probable genetic diagnosis was identified in 98/319 (31%) families, with an additional 6 (2%) possible diagnoses. Fourteen of the diagnoses (4% of the 319 families) explained only part of the clinical features. A total of 95 different genes were implicated. Of 104 families given a diagnosis, 39 (38%) had a mitochondrial diagnosis and 65 (63%) had a non-mitochondrial diagnosis. **Conclusion** Whole genome sequencing is a useful diagnostic test in patients with suspected mitochondrial disorders, yielding a diagnosis in a further 31% after exclusion of common causes. Most diagnoses were non-mitochondrial disorders and included developmental disorders with intellectual disability, epileptic encephalopathies, other metabolic disorders, cardiomyopathies, and leukodystrophies. These would have been missed if a targeted approach was taken, and some have specific treatments. Click [here](https://www.bmj.com/content/375/bmj-2021-066288) for the full article. **Categories:** Mitochondrial Disease News --- ### [Counselors Lift up this Mito Camper](https://www.mitoaction.org/counselors-lift-up-this-mito-camper/) **Published:** October 21, 2019 **Author:** Sarah Harty **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") At summer camp, Stephen Nielsen is just one of the guys … telling jokes, talking with friends, fishing, boating, and doing archery. “Most kids just want to be seen as normal and a part of the crowd. But you don’t always get that when you have something different,” said Diane, Stephen’s mom. Stephen’s mitochondrial disease makes him different from most – except at camp. “He has a great week of young adults and teens who treat him like every other kid. They treat him with respect, they listen to his funny jokes,” said Diane. “When we come back to pick him up from camp, he’s empowered with positive thinking and confidence.” Diane thought camp would be a place to get to know other kids with Mito. “But for Stephen, I think the connection he looks forward to most is the counselors. Some come back every year.” Stephen just finished his sixth year at Camp Korey. The counselors and volunteers are always positive and are exceptional, Diane said. “When the counselors talk to the kids, they get on the same level and help the campers feel comfortable,” she said. “That’s wonderful.” The campers get a lot of one-on-one time because the ratio of counselor to camper is incredible, said Val, Stephen’s dad. “I see his self-esteem grow,” Diane continued. “It’s like he’s been given wings.” Stephen, 12, has mitochondrial trifunctional protein deficiency, a metabolic disorder of the fatty acid oxidation. He can’t break fat down into energy so he follows a strict medical routine, which includes medicine three times a day, a specially made medical drink that he consumes throughout the day, and a cornstarch mixture at night. He can only have very small amounts of fat in food. He fatigues easily and has ongoing core muscle weakness. If it’s hot and he has a lot going on, “he’s running on two batteries instead of four,” Diane said. The Nielsens wondered if they’d ever be able to send him to any kind of camp because of their fear of other people having to take on his medical routine. “We were scared to put him in the care of other people,” Diane said. Added Val, “Would he be cared for like we would care for him?” But Camp Korey silenced those fears. The medical staff and dietitians there have been amazing in working with the Kent, WA family regarding Stephen’s needs. Stephen said that when he is at camp, his sisters — Laura, 21, Kathryn, 19, and Rebecca, 16 – used to get jealous. But they also realize it means an opportunity for them to get some mom time. “I had forfeited a lot of other sibling mom time caring for Stephen, particularly when the girls were young,” Diane said. “I don’t want to lose my girls while trying to save my son. It’s hard to balance. When the opportunity came up for Stephen to be taken care of, I was grateful for the time to spend with my daughters.” Diane and Val know that at camp Stephen is in wonderful hands. “Camp Korey staff and volunteers are some of the most outstanding people you will ever meet,” Diane said. “All families that participate have many opportunities to be lifted and inspired to rise above all the difficulties life has thrown their way.” **Categories:** Patient Spotlight --- ### [Students Learn About Mito](https://www.mitoaction.org/students-learn-about-mito/) **Published:** October 17, 2019 **Author:** Sarah Harty **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ## Mitochondrial disease part of curriculum for Long Branch, NJ, seventh-graders The seventh-graders at Long Branch (NJ) Middle School know about mitochondrial disease thanks to a creative teacher. Science teacher Caitlin Rudisill, in just her third year of teaching, said many teachers are doing activities around mitochondrial disease as part of next-generation science standards, which are aimed at better preparing American students in science and math. Rudisill found the Mito lesson plan on BetterLesson.com. She credits teacher John Cereza for creating it. The lesson, called “The Organization of Life – From Organelles to Organism,” includes a project in which students write letters on behalf of MitoAction and UMDF to seek funds and raise awareness. In this lesson, Rudisill teaches her students about organelles and cells. She talks about how problems at the cellular level can lead to bigger issues, like mitochondrial disease. “The students learned about the levels of organization in the body and how cells are the building blocks of life,” she said. The students read an article and watch videos about people living with mitochondrial disease and learn how such a small malfunction of an organelle can cause such severe reactions throughout the whole body. “The students were really intrigued,” Rudisill said. “Most had never heard of \[mitochondrial disease\].” The lesson plan’s big idea states: By investigating the impact of mitochondrial disease on cells, students discover why cells matter. The six sections of the lesson plan are quite amazing: **Warm-up:** To measure background knowledge, students fill out a bridge map that correlates mitochondria to a furnace, with the relating factor being “**provides energy**.” **Engage:** This lesson elicits students’ prior knowledge on cell theory, specifically that cells are the basic building block of living things. **Explore:** Students discuss how a series of vocabulary words (organelle, cell, tissue, organ, organ system, organism) should be organized into a flow map. **Explain:** Students gain a deeper understanding of levels of organization. Through videos, students are taken on a journey inside a living human body. **Elaborate:** Students analyze the article, “The Invisible Disease That’s Killing Our Son,” which discusses the cause and effect of mitochondrial disease through the eyes of a young boy and his family. Through this article students are able to see a real-life application of what they’re learning: a story of cells and the organelles that constitute the systems of the human body. **Evaluation:** To assess understanding of content, students are required to write a letter based on their “expertise” from the article they read. The assignment tells the students they have been hired by MitoAction and UMDF for Global Mitochondrial Disease Awareness Week to write an informative and persuasive letter to a potential donor whose money can get doctors and researchers closer to a possible cure. “I am here to inform you about an invisible, dangerous disease that has no cure,” Emma Viegas starts her letter. “The disease is called mitochondrial disease and it is killing many. However, with your help, we can change this.” Jonathan Rocha starts his letter by asking: “What are your fondest childhood memories? Maybe it’s the first time you rode your bike, or the times you played in your back yard? Now imagine you couldn’t do those things. … If you’ve ever heard of mitochondrial disease you know many people lose the ability to experience these great things. If you donate for this cause, you can help fund research to find out what causes this invisible disease.” Zachary FitzGerald asks in his letter, “Did you know that every 30 minutes a child is born that will have mitochondrial disease before the age of 10! The serious disease kind of eats away at your energy until you don’t have enough to survive.” Angel Dong’s letter states: “The disease is caused by the failure of the mitochondria, which is an organelle. The mitochondria creates energy and is the powerhouse of cells. The mitochondria are responsible for creating more than 90 percent of the energy needed by the body to sustain life and support growth. If the mitochondria fails, cell injury and even cell death follow.” The disease slowly works its way from the mitochondria organelle, to the cell, to the tissue, to the organ and eventually the whole organ system, writes Jonathan. The mitochondria functions like batteries so “if this process is repeated throughout the body, whole systems begin to fail, and a person’s life is severely compromised.” Evan McKnight’s letter states that symptoms may include loss of motor control, muscle weakness and pain, gastrointestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual or hearing problems, lactic acidosis, developmental delays, and susceptibility to infection. “You may be thinking that this isn’t an important thing to give your money \[to\], but this is affecting a lot of kids and adults,” Emily Santos writes. “There are many little kids dying at a young age. The money will help scientists find a way to help the adults and kids get rid of this disease. What if your child had this disease and you had to find out that your 2-year-old is going to meet death at a young age? … Stop and donate and you will help a lot of people. STOP THE MITOCHONDRIAL DISEASE!” Evan ends his letter: “If you donate money to this cause, this could make diagnosis for children that have no hope of living have an earlier diagnosis to get treatment to help them cope with this illness.” Rachael Luna says that many families still have hope that their loved ones will one day live a healthy life. “Many people already donate and you should, too. Not only will donating make you feel good, it will also make others feel good.” Rudisill said this lesson has inspired some kids in her class to want to raise awareness and funds. Since the school year is almost over, those will be projects for next year. A big thanks to Rudisill and her students for raising awareness! **Categories:** Patient Spotlight --- ### [Brother with Mito Inspires Toy Design Project](https://www.mitoaction.org/brother-with-mito-inspires-toy-design-project/) **Published:** October 17, 2019 **Author:** Sarah Harty **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Lincoln Ogonowski’s mitochondrial disease limits his mobility, so big brother Luke Krumich will often play with Lincoln’s toys for him. “I know what he likes and what he thinks is funny,” Luke said. Lincoln is 3 years old and has Leigh’s syndrome, a devastating form of mitochondrial disease. Luke, 12, is his protective, loving, awesome older brother. The sons of Dyna and Rob Danger of Freehold, NJ, are as close as brothers can be. Luke is a sixth-grader at Barkalow Middle School in Freehold. When an opportunity arose at his school to apply for an innovative design program called Spark, he wanted to create something for Lincoln — and all kids who have Mito. Luke’s application outlined his design for a toy that doesn’t require a lot of energy, making it perfect for Mito kids. During the interview process, Luke talked about Lincoln and about Mito, bringing awareness to the disease. “I told them that it’s hard for Lincoln to use regular toys. He can do this toy on his own.” Luke was accepted into the program that gives him and seven other kids time during the school year to build their projects at the Glenn A. Miller Center (GAM) Center, a high-tech, tricked-out science, technology, engineering, art and design, and mathematics (STEAM) facility. **Lincoln’s Toy** Lincoln has Leigh’s syndrome, Complex 1 deficiency. He can’t walk or crawl but he can shift himself on the floor. With Lincoln as his inspiration, Luke created his toy design. “He’s observant of his brother,” Dyna said. “He knows what he likes and what he doesn’t like.” Luke’s toy design, which doesn’t have a name yet, is a mat that consists of a series of colorful foam squares that boast letters and shapes and contain sensors and noise boxes. The toy’s colors, artwork, and even the sounds would be customizable for each child. If a child likes certain sounds, music, or voices, those would be programmed into the sensors. Lincoln, for example, is motivated by people’s voices, so voices will be incorporated into his toy. The child would lie on the mat and roll around to make the different sounds. “Lincoln moves enough that if he’s on the mat, it would work,” Dyna said. “I burst into tears when Luke told us he wanted to make a toy for kids with Mito,” she continued, noting that Luke didn’t even tell them he had applied for the program until he reached the interview phase of the application. The night before the interview, Luke asked his parents about Mito and what kinds of things parents would appreciate in a toy. They suggested the toy be safe and easy to clean. “But Luke had already thought of everything before he even talked to us,” Dyna said. “It’s important to help others,” said Luke, who hopes to have a prototype of his toy done by June. “This project is important because I know Mito is serious and there’s no cure, so I want to make kids happy.” **Special Bond** Luke would do anything for Lincoln. “He’s a regular little brother, a pain in the butt, but really funny and really cute,” he said. He stumbled when he tried to describe their special bond. “He’s just so … he’s … it’s hard to explain.” What’s not hard to explain is the love Luke has for his little bro. “They’re very, very close,” said Dyna. “Luke adores Lincoln. And Lincoln adores Luke. The moment he hears Luke’s voice, he gets so excited.” Luke helps feed Lincoln, who is 100 percent tube fed. He holds Lincoln while their mom makes dinner. He holds him while they watch Lincoln’s favorite TV shows together. “He’s absolutely focused on Lincoln,” Dyna continued. “It’s absolutely his world.” Luke has been involved with Lincoln’s care since he started having issues. “And he’s never complained,” Dyna said. Luke’s friends view Lincoln as their little brother, too. When they visit, they all hang out with Lincoln and include him in whatever they are doing. Luke and his pals have raised money and awareness for mitochondrial disease. Luke is a high honors student, a cross-country and track athlete, and CEO of the school’s Business Club store. He plays rec basketball and is the manager for another basketball team. He has a real knack for numbers: For fun, he figures out college and NBA basketball stats. He also loves to make Lincoln laugh. Luke’s funny voices and noises send Lincoln into fits of laughter. “Seeing him laughs make me happy,” Luke said. “When I get yelled at, he thinks it’s hilarious,” Luke said, noting he doesn’t actually get yelled at very much. Luke has a little basketball hoop on a door. “\[Lincoln\] was watching me do that and I ran into the door. He busted a gut laughing.” Dyna and Rob are very proud of their sons. “Luke is our world-changer,” Dyna said. “And Lincoln is his muse.” **Categories:** Patient Spotlight --- ### [Nadrich Sisters Feel the Magic of Double H Ranch](https://www.mitoaction.org/nadrich-sisters-feel-the-magic-of-double-h-ranch/) **Published:** October 17, 2019 **Author:** Sarah Harty **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Double H Ranch is a camp for children who are dealing with serious illnesses. Thanks to the camp’s amazing medical staff, Double H gives children who cannot attend conventional sleep-away camps due to medical issues a chance to go away, have fun, and be just like any other child. Just ask Susan and Mike Nadrich and their daughters, Madeline and Tyler. “It’s one of the most amazing places. It’s magical,” said the East Amherst, NY mom. Madeline (Maddie) and Tyler are six-year Double H Ranch camp veterans, and they can’t wait to go back this year. Double H Ranch is a camp for children who are dealing with serious illnesses. Thanks to the camp’s amazing medical staff, Double H gives children who cannot attend conventional sleep-away camps due to medical issues a chance to go away, have fun, and be just like any other child. Just ask Susan and Mike Nadrich and their daughters, Madeline and Tyler. “It’s one of the most amazing places. It’s magical,” said the East Amherst, NY mom. Madeline (Maddie) and Tyler are six-year Double H Ranch camp veterans, and they can’t wait to go back this year. Maddie, 13 (right), has a diagnosis of mitochondrial disease and hypogammaglobulinemia. Tyler, 16, has some Mito symptoms. Both girls have Ehlers-Danlos syndrome. “The girls enjoy having a chance to be away from home and meet new friends at camp,” said Susan. Each child gets something different out of camp. “Maddie, who has to go to bed early and take naps due to her Mito, doesn’t feel alone at camp, since there are others just like her there. “For Tyler, it’s a whole six days that she gets to just have fun. It’s her chance to be herself and not be responsible for anyone else,” said Susan, who relies on Tyler to help with Maddie and around the house. Maddie has a wheelchair, but she doesn’t always use it, because she doesn’t want to be different from her friends. “But at camp, she can let her guard down, tell people how she feels, and use her wheelchair,” Susan said. According to Maddie, camp gives her “the sense that you’re not alone. You can still have fun no matter what your illness is.” One of Maddie’s favorite things at camp is the giant swing. “I usually go all the way to the top. You just go flying,” she said. Last year, she also loved making one of the camp counselors lick a tree … three times! “The camp counselors go to extremes to keep the campers happy,” said Susan. “The counselors make sure the kids feel special, that their illnesses don’t define them.” That camp feeling stays with Maddie year-round. “I love it so much, I think about it all the time.” Maddie will go to camp every year she can, join the alumni program, then hopefully become a counselor in training. Maddie stays in touch with all her camp friends throughout the year. She’ll wake up to text messages every morning from them. Tyler (center, wearing glasses) calls her camp experience amazing. “Every year it’s amazing. I never get bored by it. I’ve made a lot of long-term friends. I love meeting new kids each year. The first year I met a girl and we’ve been friends ever since. We always try to get the same sessions.” Camp has allowed Tyler to step out of her comfort zone. “I walk up to people and talk to them instead of waiting for them to talk to me.” A typical example of that happened this year when Tyler saw a girl using sign language. Tyler went up to her and started signing with her. The girl was thrilled, telling Tyler that she made her whole week. At the Lake Luzerne, NY camp, everyone is family. “You’re automatically family even if you don’t know people. It’s very accepting. Everyone is normal at Double H Ranch. There are no boundaries once you go to Double H. It’s nice to carry that into school,” Tyler said. Double H Ranch () is part of the SeriousFun Network ([www.seriousfunnetwork.org](http://www.seriousfunnetwork.org)) of camps whose mission is “to create opportunities for children and their families to reach beyond serious illness and discover joy, confidence and a new world of possibilities, always free of charge.” **Categories:** Uncategorized --- ### [Brionna](https://www.mitoaction.org/brionna/) **Published:** October 17, 2019 **Author:** Sarah Harty **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ## 1 girl + 1 community = big difference ## Brionna & family have right equation to raise awareness Never underestimate the power of one: one girl, one mom, one family, one community, one cause. When the Myers family of West Terre Haute, IN learned their daughter and sister, Brionna, had mitochondrial disease, they went on an awareness-raising and fundraising rampage. And they will never stop. From Day 1, mom Karen Myers has believed, “One little girl and one community can make a difference.” In 2013, Karen and Brionna set a goal of raising $2,500 for Mito in six months. “If we can raise that, we’ve done good,” Karen said. The family raised that … and then some. After six months, Karen, her husband, Martin, their sons, Cass, 25; Alex, 21; Jarrett, 16; Preston, 15; and daughter Brionna, 9, raised $13,000! By the end of this year, Karen expects the family will have raised $40,000! The family donates the money to the United Mitochondrial Disease Foundation and MitoAction. “I can’t stop this disease but I can raise awareness and money,” Karen said. “There are things I can do for her. We need to raise awareness of this disease!” Karen stayed in bed and cried for a month after learning Brionna was diagnosed with mitochondrial disease, Complex I, III, and IV. “Nothing can prepare a mother or father to hear this. I was devastated to think that she has a life-threatening disease with no cure,” Karen said. “It was the first time we had heard of this disease so we started educating ourselves. We were in complete shock.” **Brionna’s story** Brionna has battled health issues her whole life. She was born with an enlarged heart, a club foot, and hip dysplasia. She was late to talk, late to walk, always more tired than other kids, and always a little behind. When she got sick, it took her longer than others to recover. The turning point came in February 2011. The whole family got sick but Brionna ended up in the hospital. The family was told she had RSV and maybe pneumonia. In a few hours, everything changed and she ended up in intensive care for three weeks. Her lungs collapsed and were 30 percent damaged. At one point, she couldn’t walk. One doctor said she has muscular dystrophy. They ran tests and an MRI and still didn’t now what was going on. Brionna had to learn how to walk again; she underwent speech and occupational therapy; she started using a wheelchair to reserve her energy. “She never got back to her baseline,” Karen said. In October 2012, Brionna had a muscle biopsy and in December, the family finally had answers. “We spent two years going through this,” Karen said. “If I had picked up a pamphlet (about Mito), I would have known it was Mito.” The family has explained to Brionna that she has Mito and she knows a little about the disease. “She had just turned 7,” Karen said. “She knows the basics but not all of it. She needs to be a child. We worry enough for her.” Brionna is a sweet, happy, loving little girl with an amazing positive attitude. “She’s friends with everyone,” Karen said. “She never leaves school without telling everyone she loves them.” But as she gets older, she has more questions. And she wants to be like the other kids. “She wants to dance; she wants to do cartwheels,” Karen said. But she never loses her positive attitude and happiness. “When you’re diagnosed at a young age, you accept it more.” When she’s not raising money or awareness, Brionna said she likes to do crafts, draw, color, and play with stickers. In school, she likes art and music classes, but doesn’t like bullies. She also loves DisneyWorld (where she went for her Make A Wish trip), the beach, and the zoo. When asked what she likes most about raising money, Brionna said, “For kids, to help them and to get them some medicine.” **Getting the word out** Karen feels blessed to be part of an amazing community. “The whole community came together like I’ve never seen. I’ll never be able to thank them enough.” In that first year, there were restaurant nights, walks and runs, Mito Mondays, a balloon release, auctions, concession nights, sporting events, bake sales, T-shirt days, and so much more. The first event, in which Tumbleweeds restaurant donated 20 percent of its proceeds from a Mito day, raised $1,000. “People waited two hours to get into the restaurant,” Karen said. Their local Channel 10 TV station did a story on Brionna going back to school and about Mito, which got things going. Karen started a Facebook page called “Prayers & Love for Brionna.” “I set a goal of 500 people to raise awareness.” The page quickly reached 5,000 likes and now has more than 15,000 likes. Their goal is now 20,000 likes! School nurses educated Brionna’s whole school about Mito. Brionna accompanied the high school football team to the Indianapolis Colts’ stadium to raise awareness. The high school volleyball team held a Mito night. The middle school held a walk around the track to raise money. An elementary school raised $600. The Myers worked a concession stand at the ballpark in return for a percentage of the night’s proceeds. Brionna is a regular at the fire department and has been the grand marshal — or grand princess — at their parades. And the mayor of Terre Haute has made September Mito Awareness Month in honor of Brionna. The family now focuses on three main events: the Hope for Brionna 1-mile walk and 5K (which regularly draws 500 people!); a quarter auction; and a Harvest Moon Dance for high school kids, which is a joint effort with United Cerebral Palsy even though Brionna doesn’t have CP. Karen has spoken about Mito to women’s groups, church groups, a full congregation, firefighters and EMTs, even medical students. “I’ve never done anything like this before. It’s so far out of my comfort zone,” she said. “My legs were shaking, but I’m more scared by my daughter having this disease living in her body than I am speaking to audiences.” In the last few years, four billboards have graced the town of West Terre Haute, featuring a giant picture of Brionna and the words, “Help me raise awareness of mitochondrial disease.” The billboard puts a face to the name Mito. “I want Mito to be a household name,” Karen said. She hopes that one day the green ribbon symbolizing mitochondrial disease will be as well known as the pink ribbon for breast cancer. “The only thing that helps me is to do this,” Karen said. “My therapy is to raise awareness. It’s the only thing I can do for her. I’m her mom. It’s my job to step up.” People have told Karen to take a break. “But I can’t. Time is not on her side. I have to do everything I can as her mother. I can do my part to make a difference for Brionna and other Mito kids.” **Worth the effort** Karen admits this is all a lot of work. Not only is she taking care of Brionna, but the boys are involved in sports and her husband was diagnosed with cancer. She noted that when Martin was diagnosed with cancer, he immediately had appointments and surgery scheduled, a plan in action, support in place. “Everyone knows what cancer is,” Karen said. “He had treatments … he had hope. Mito kids don’t.” Martin’s cancer is in remission. People have emailed Karen for advice on how to cope, what to do, how to move forward. “Get a group of people and ask if they’d help you start a group because you’ll need someone to help you,” Karen offered. She created Team Brionna, which has been a godsend. Many of the members are nurses or teachers; all are people Karen knew and respected and could count on. Enlist the kids in your family, their sports leagues and their friends. Reach out to schools, teachers, coaches, community clubs. Contact local stores to see if you can set up a table and hand out information. The possibilities are endless. The Myers are a normal middle-class sports family. Martin is a contractor and Mason; Karen is a stay-at-home mom. “Anyone can do something small,” Karen said. “Raise awareness. Reach out through Facebook. Parents can step up and make a difference for their child. Every little bit helps. No matter what, keep plugging. If I can do this, anyone can do this.” **Categories:** Patient Spotlight --- ### [MitoAction Submits Comment to FDA on Proposed Changes to Compounding Pharmacy Regulations](https://www.mitoaction.org/mitoaction-submits-comment-to-fda-on-proposed-changes-to-compounding-pharmacy-regulations/) **Published:** October 17, 2019 **Author:** Sarah Harty **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") On Monday, July 20, 2015, MitoAction submitted a comment to the FDA on its proposed Memorandum of Understanding concerning the distribution of products from compounding pharmacies. The proposed Memorandum of Understanding would substantially limit the ability of compounding pharmacies to distribute compounded prescriptions across state lines. Since many Mito families rely upon high-quality compounding pharmacies that often are located in states other than their own for preparation of the Mito cocktail and other supplements, the proposed Memorandum of Understanding would have a significant detrimental effect on the Mito community. MitoAction submitted the following comment to make the FDA aware of the proposed Memorandum of Understanding’s disproportionate impact on the rare disease community. \_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_ **Agency:** Food and Drug Administration (FDA) **Document Type:** Nonrulemaking **Title:** Memorandum of Understanding Addressing Certain Distributions of Compounded Human Drug Products Between the States and the Food and Drug Administration; New Proposed Draft; Availability **Document ID:** FDA-2014-N-1459-0001 **Comment:** On behalf of MitoAction, a non-profit organization that represents patients suffering from mitochondrial disease and their families, I would like to express my deep concern over the proposed changes to the FDA Memorandum of Understanding Addressing Certain Distributions of Compounded Human Drug Products Between the States and the Food and Drug Administration. MitoAction has a strong interest in ensuring that its patients are able to access high-quality compounded medications no matter where they reside in the United States. Patients with mitochondrial disease, which affects energy production within the cells, often use compounded preparations consisting of high-dose vitamins and antioxidants to combat the symptoms and slow the progression of the disease. Since mitochondrial disease is rare, only a handful of compounding pharmacies specialize in preparing these compounds, each of which must be specially tailored to the particular patient. The FDA’s proposed Memorandum of Understanding (“MOU”) would limit the distribution of compounded medications to 5% of sales for compounding pharmacies in a state that does not sign the MOU, and 30% of sales in states where the state government has signed the MOU. These limits are concerning to the mitochondrial disease community for the following reasons: (1) There is a disincentive for states to sign the MOU as it requires increased state oversight without the allocation of additional funds to state governments for this extra work. Compounding pharmacies located in states that do not sign onto the MOU have no recourse and stand to lose significant business if their state does not agree to the MOU. (2) The limits on sales imposed on compounding pharmacies will be more burdensome for high-quality pharmacies with expertise in a particular patient population and customers throughout the country. Since compounding pharmacies that specialize in preparations for rare diseases and cater to widely dispersed patients will be disproportionately impacted, patients with rare diseases are more at risk of losing access to vital compounded medications. (3) The stated limits would be difficult to comply with as pharmacies cannot predict what percentage of total sales will be comprised of out-of-state sales until the end of the year. Since it will be impossible to tell what percentage of sales are out-of-state until the end of the year, some compounding pharmacies may decide to cease interstate sales altogether. This would have a terrible impact on families dealing with rare diseases, such as mitochondrial disease, who rely heavily on well-established compounding pharmacies for life-sustaining medications and supplements. As long as pharmacies are licensed in the states to which they are shipping, there should be no limit on the number of sales shipped out of state. In addition to serving as Director of Outreach & Advocacy for MitoAction, I am also the parent of a child with a mitochondrial disorder. My child takes two compounded preparations, one of which comes from a compounding pharmacy in Massachusetts, and the other of which is delivered from a compounding pharmacy in Ohio. We sought out these compounding pharmacies after failing to find the expertise we needed among compounding pharmacists in our home state of Georgia. With these compounded prescriptions as part of our medical regimen, my child has gone from multiple hospital visits per year to zero hospital visits since March 2014. I am extremely concerned that if our current compounding pharmacies are unable to send our compounded preparations to Georgia, my child will suffer from increased symptoms and additional hospitalizations. Our family’s situation is representative of many other mitochondrial disease patients and families. The MOU as it currently stands would penalize most harshly the compounding pharmacies that have been the most successful and to whom patients turn because of their specialized knowledge. Without access to knowledgeable compounding pharmacists, some of whom may be in states different than their own, the patients ultimately pay the price with their health and associated increases in medical costs. On both a personal and professional level, I urge the FDA not to place these limits on patient access to compounded medications and to find a different way to oversee and regulate compounded preparations that travel through interstate commerce. The health and welfare of rare disease patients like my child hinge very much on taking a different approach than the one found in the current Memorandum of Understanding. Respectfully submitted, Christine S. Cox, J.D. Director of Outreach and Advocacy MitoAction P.O. Box 51474 Boston, MA 02205 www.mitoaction.org 1-888-MITOACTION (1-888-648-6228) **Categories:** MitoAction in the News --- ### [MitoAction's Statement on Nationwide Closures of Mitochondrial Disease Clinics](https://www.mitoaction.org/mitoactions-statement-on-nationwide-closures-of-mitochondrial-disease-clinics/) **Published:** October 17, 2019 **Author:** Sarah Harty **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") In the past year, the mitochondrial disease community has witnessed the closing of five clinics specializing in the treatment of mitochondrial disorders. While these clinic closures all have occurred for slightly different reasons, it has become clear that treatment of mitochondrial disorders, with their varied presentations, diagnostic difficulties, and limited available treatments, is not considered a priority at academic centers across the country. This reality has emerged at one of the most exciting times in mitochondrial medicine, during which advances in genetic testing are making diagnostic processes less invasive and new therapies for mitochondrial disease are on the brink of starting clinical trials or seeking FDA approval. The loss of five specialists is a massive blow to the mitochondrial disease community, representing nearly 15 percent of the active clinicians available for patient care. Mitochondrial medicine has never been a big field, and the number of clinicians has always been few and far between. Patients often have to travel a great distance for care as not every state has a mitochondrial disease specialist available. With the numbers of specialists available for patient care now even further reduced, the mitochondrial disease community is facing a nationwide care crisis that must be addressed in a thoughtful and deliberate manner. With its mission to serve as the voice of the patient, MitoAction is taking this crisis in patient care very seriously. MitoAction is collaborating with the members of its Medical Advisory Board and Advocacy Task Force to explore the systemic reasons for these clinic closures on a national level. MitoAction also is concentrating on finding viable solutions to this care crisis and is currently investigating possible options through conversations with clinicians, patients, and families. In the meantime, MitoAction will continue to educate primary care physicians and non-Mito specialists on the clinical management of mitochondrial disease patients through its clinical conference CME offerings, the next of which will be held on March 21 in Atlanta, GA. MitoAction’s Mito411 line is available to help patients with specific physician referrals, and MitoAction’s updated mitochondrial disease specialist list can be found at www.mitoaction.org/doctors. If you have additional physicians to add to this list or know of non-Mito specialists who are well-versed in mitochondrial disease care, please contact Ginger DeShaney at support@mitoaction.org. Mitochondrial medicine is a complex field that deserves the best and the brightest. Together, we will encourage physicians to practice in this field, hospitals to staff clinics with a mitochondrial disease focus, and researchers to continue to search for a cure. **Categories:** MitoAction in the News --- ### [Kayla West Uses Pageant Platform to Raise Mito Awareness](https://www.mitoaction.org/kayla-west-uses-pageant-platform-to-raise-mito-awareness/) **Published:** October 17, 2019 **Author:** Sarah Harty **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Kayla West’s cousins have mitochondrial disease. “I helped them feel like normal kids,” she said. “That’s what they wanted.” Kayla spent two years helping to take care of her cousins before her family moved from Washington to Texas. She would make sure they didn’t get too hot; she hooked them up to their heart monitors, oxygen, and feeding tubes before bed; she played with them; and she carried them if they needed it. “They became a huge part of my life,” she said. When Kayla entered the pageant circuit in Texas and learned she needed a platform, “I knew right away it would be mitochondrial disease.” The 16-year-old daughter of Trisha and Timothy Stutz, who is the reigning Young Miss Copperas Cove Rabbit Fest, is raising awareness about mitochondrial disease through her pageant platform: “Mitochondrial disease is an inherited chronic illness that affects the way the major body organs function. I witnessed this firsthand with my 5- and 8-year-old cousins when I used to help take care of them and put them to bed and hook them up to their heart monitors, oxygen and feeding tubes. But that’s not the worst part. Statistically, only one of them shall live to the age of 10 and the one who lives to the age of 10 shouldn’t live past his teenage years. So, I want to raise awareness and much needed funds to, someday, hopefully find a cure.” As part of her title, Kayla, who lives in Copperas Cove, TX, is required to do a community service project on behalf of a charity. Her event, the Krist Kindl Pageant in December, benefited MitoAction. The 45 participants in the pageant got a packet of information about mitochondrial disease and a green Mito ribbon and Kayla told the audience about it. She even wore a Mito green gown to the event! The Krist Kindl pageant saw a 38 percent increase in participation over last year, said Wendy Sledd, director of the Copperas Cove Rabbit Fest Pageant. She credits that to Kayla’s hard work in marketing the pageant to everyone she knew. “We are excited to have so many contestants to help in the fight against mitochondrial disease,” Kayla said. Through Kayla’s hard work, MitoAction received a generous donation of $1,562.42! Wendy, a military spouse, didn’t know what Mito was. “Kayla gave me an education. Her passion comes through. She does so much to educate others.” Kayla talked with her aunt about Mito and did research on the MitoAction website to prepare the platform speech she gives. Trisha praised the strength of the boys’ mother. “She’s the strongest woman I know,” she said. “She doesn’t think she’s doing anything out of the ordinary.” The boys’ family is grateful that Kayla is raising awareness about mitochondrial disease. And Kayla’s parents couldn’t be more proud. “It’s amazing to see the person she’s becoming. She’s really inspiring.” Organizing a pageant is a lot of work … and Kayla was doing that in addition to attending high school (she’s a junior), taking college courses, being a member of the choir, the Rowdy Roos (a cheerleading/spirit club), and the FFA, working, and fulfilling pageant commitments every weekend! Plus, an ice storm forced the festivities indoors the day before the pageant so Kayla had to scramble to find a new location in hours. “It’s a lot to juggle,” said Wendy. “Kayla did a fantastic job with it. She was rockin’ it in high heels.” Said Kayla: “The more people who know about mitochondrial disease, maybe more children will no longer go undiagnosed and can get the medical treatment they need.” **Categories:** Patient Spotlight --- ### [Bride Raises Mito Awareness](https://www.mitoaction.org/bride-raises-mito-awareness/) **Published:** October 17, 2019 **Author:** Sarah Harty **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2020/09/IMG_0701-200x300.jpg) The groom and groomsmen wore BowTie Cause MitoAction bowties. The bridesmaids wore green. Every guest got a MitoAction bracelet. Even the wedding invite was green and included the Mito ribbon. The bride, Devon Gottfurcht, has mitochondrial disease and she used her wedding to Dan DeSario as a vehicle to raise awareness about Mito. “There’s not a lot of awareness for mitochondrial disease,” she said. In an ironic twist that Devon wasn’t aware of when they scheduled the wedding, the big day was Sept. 18, 2016, the first day of Mitochondrial Disease Awareness Week! During the wedding ceremony, Devon’s nephew told the attendees why the men were wearing the ties and what they meant. Her best friend’s daughter read the definition of Mito. “At the wedding, people got it,” Devon said. “It was discussed. People understood I went through a lot … that I was a survivor. ***“We raised 100 people’s awareness about Mito!”*** In 2015, Devon saw on TV and Facebook that Ken Rosenthal was wearing the MitoAction bowtie during the Major League Baseball playoffs and she called her father, John Gottfurcht, and told him. “He suggested we buy them for the wedding and Dan agreed. Then I contacted MitoAction! ![](https://www.mitoaction.org/wp-content/uploads/2020/09/A1DX1265-300x200.jpg) “I then decided to make the accent color and bridesmaid dresses Mito green or a variation of green to bring awareness.” After Rosenthal’s appearance during this year’s MLB playoffs in which he wore the MitoAction bowtie, Devon wrote to him: *Mr. Rosenthal, l just want to thank you for wearing the Mito bowtie. Although rare, I’m an adult living with mitochondrial disease diagnosed with CPEO in my eyes and there is no cure! … In 2015 you wore the Mito bowtie and we bought a bunch for our wedding to bring awareness to the disease! … It’s people like you who inspire and keep me going! I thank you from the bottom of my heart for spreading awareness and compassion to our disease!* Rosenthal wrote Devon back: *… thanks for the note. I’m with you … You inspire ME! … I really admire your courage. Can’t imagine what it must be like to live like that. Thoughts are with you.* ##### A Love Story Devon and Dan got engaged several years ago. When Devon was diagnosed with Chronic Progressive External Ophthalmoplegia (CPEO), a mitochondrial disease that affects her eyes, she told Dan to leave, that he wouldn’t want to take this on. ![](https://www.mitoaction.org/wp-content/uploads/2020/09/7D0E12B1-E284-42D6-8D82-A4F2280E3080-300x225.jpg) “I hung up on him. I told him to find someone healthy,” Devon said. But Dan didn’t listen. “He tells me I’m beautiful every day. He tells me I’m the same person on the inside.” Devon and Dan, an attorney, met on Match.com. They fell in love over their mutual hatred of sushi and their love of music. “Music is huge for us,” she said, noting the Rolling Stones is their favorite band. “We’ll stay home and listen to music, since I can’t watch TV.” When they met, Dan had back issues that eventually required surgery. Devon was there for him and he’s there for her. “We are a team,” she said. ##### The Journey It’s been a tough road for Devon. The disease required her to have to wear sunglasses because of light sensitivity, even indoors, which caused people to think she was drunk or stoned. She’s heard comments like, “It’s rude to wear sunglasses indoors.” Or, “Look, it’s Lady Gaga.” She had to stop working – her background is in sales and real estate — and driving. For Devon, there is also a heart component, loss of hearing, and weakness in her legs and feet. Yet she knows she is one of the lucky ones. “I consider myself a Mito warrior and have been told I’m one of the lucky ones, because had I gotten Mito as a child, my life expectancy would be 10 years,” Devon said. “Since I’m fully grown, I should live a full life, just a different life.” ![](https://www.mitoaction.org/wp-content/uploads/2020/09/IMG_0447-225x300.jpg) It’s the love of her husband, family, and friends that gets her through. Until the age of 41, Devon never had any symptoms. “I was super healthy,” she said but noted that if you look at pictures of her at age 35, you can see her eyes seemed lower. “It hits you all at once,” she said. “It’s a lot. You become a prisoner to it. “You feel very alone; it’s an invisible disease. People don’t understand … and I don’t want to explain it every day.” Devon is not going blind, but her eyes get blurry, dry, tired, and droopy. Her doctors were able to give her her days but not her nights, making it difficult for her to go out after dark. She stopped being invited out by some family and friends. She felt isolated when she was first diagnosed. Devon blames herself because she didn’t want to be a burden to anyone. It took a while for her friends and family to adjust to Devon’s new normal. Devon’s amazing team of Los Angeles area doctors includes her cornea specialist, Dr. Nicole Fram (“I call her Dr. Hope as she was the first doctor to give me hope! I named my service dog Hope after her.”), and Dr. Guy Massry. But because Mito is rare, Devon has struggled to find a Mito specialist for her team. Dr. Massry, a board-certified oculoplastic surgeon, performed two surgeries in July to lift her eyelids so she could see without having to use her forehead and or fingers to hold her eyelids open. In the second surgery, the left eye had to be lowered because it couldn’t handle the elements an hour after the first surgery. However, Devon’s corneas struggle so she goes to the doctor every few days. The surgery is reversible but Devon is fighting for that not to be her outcome. She is training to wear special lenses not covered by insurance. She went from dress fittings to surgery to post-op to dress fitting to doctor appointments. She currently has appointments with Dr. Fram, Dr. Neda Shamie, and Dr. Robert Silver three times every week for bandage contacts. But her wedding went off without a hitch. “If it wasn’t for Dr. Massry, I would have had to walk down the aisle in sunglasses,” Devon said. “He opened my eyes and Dr. Fram and Dr. Shamie are helping me to see and keep my corneas healthy.” Devon gives back whenever she can. “When you feel helpless, help others,” she said. Every year she holds a toy drive for Children’s Hospital in Los Angeles. In the future, Devon wants to start a website as a place for people to find a doctor, find a friend, find hope. She has the domain name for www.everybodydeserveslove.com. “You can’t give up hope,” she said. “I want to do something.” ![](https://www.mitoaction.org/wp-content/uploads/2020/09/IMG_0754-300x200.jpg) **Categories:** Patient Spotlight --- ### [This Daredevil Inspires His Team](https://www.mitoaction.org/this-daredevil-inspires-his-team/) **Published:** October 18, 2019 **Author:** Sarah Harty **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") BALTIMORE, MD — Charlie Bainbridge is a real daredevil. The Catonsville, MD, boy who is battling mitochondrial disease is the inspiration behind “Charlie B’s Daredevils,” a team of 22 walkers who will return for the fifth consecutive year to walk in MitoAction’s Energy Walk and 5K in South Boston, MA, alongside other families and patients affected by mitochondrial disease. Charlie B’s Daredevils was formed by Jeanne Jarvi of Tully, NY, in honor of her 11-year-old grandson, Charlie Bainbridge. The team travels to Boston every September to raise awareness and money for MitoAction, an organization whose mission is to improve the quality of life for all who are affected by mitochondrial disorders through support, education, outreach, advocacy, and clinical research initiatives. This year marks MitoAction’s 10th annual walk and will be held Sunday, Sept. 14, at DCR’s Mother’s Rest. “MitoAction is the voice of the mitochondrial disease patient community, and we are inspired by the teams, families, sponsors, and individuals who come together each year to support this event,” said Cristy Balcells, MitoAction’s Executive Director. “For us, celebrating the 10th anniversary of the MitoAction Energy Walk & 5K signifies much more than excitement about an annual event. September 14th is a celebration of the heroes in our community, of our shared successes and frustrations, and of tremendous growth. We are proud to walk together and to raise awareness in Boston about mitochondrial disease.” Charlie is one of those heroes. At birth, he was diagnosed with a neurological disorder that derived from extremely low muscle tone. At six months, he developed infantile spasms and his family valiantly searched for an answer. After years of tests and two muscle biopsies at age 5, it was concluded that Charlie had defects in the mitochondria. With a defect, the body is deprived of the energy needed to function properly. Mitochondrial disease is an inherited chronic illness that can be present at birth or develop later in life. It causes debilitating physical, developmental, and mental disabilities with symptoms including poor growth; loss of muscle coordination; muscle weakness and pain; seizures; vision and/or hearing loss; gastrointestinal issues; learning disabilities; and heart, liver, or kidney failure. About 1 in 2,000 people has Mito. It’s progressive and there is no cure. Charlie’s condition has not improved but it has remained stable with age. “The unique thing about Charlie is that his disease started out so severely from birth that there has been nowhere to go but up,” said Julie Bainbridge, Charlie’s mother. Charlie has been in and out of the hospital three times in the last six months with various illnesses related to the disease. “Our hearts break when Charlie is having problems because we know how that is affecting Julie and her family,” Jarvi said. “I think one thing I wish people would realize is how much Mito can affect the entire family.” Mason, Charlie’s 7-year-old brother, has learned to protect his brother if he is ever in danger. “If Charlie has a seizure, Mason will call out ‘Charlie’s having a seizure’ and he will start patting his cheek until Julie gets there,” said Jarvi. Charlie, who enjoys swimming with the help of his family, is being treated at Nemours Children’s Hospital in Wilmington, DE and Johns Hopkins in Baltimore, MD. This daredevil will proudly lead his team in Boston come Sept. 14. The event is presented by America’s Compounding Center and sponsored by Stealth Peptides, Courtagen Life Sciences, Inc., ThriveRx, Acton Pharmacy, and Deep River Snacks. Proceeds from the walk/5K benefit MitoAction, a Boston-based 501(c)(3) dedicated to improving the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, and clinical research initiatives. Learn more at[ www.MitoAction.org](https://www.mitoaction.org). For more information, email or call 888-648-6228. To register, [www.mitoaction.org/walk](https://www.mitoaction.org/walk). **Categories:** Patient Spotlight --- ### [Eric Harty Works His Magic with Metal](https://www.mitoaction.org/eric-harty-works-his-magic-with-metal/) **Published:** October 21, 2019 **Author:** Sarah Harty **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Paul Harty and Eric Harty are not only first cousins; they are friends. Eric looks up to Paul, who is older. Paul admires Eric’s artistic ability. They are both musicians. They support each other. They are as close as brothers. So when Paul found out that Eric had fallen in love with welding as an art form, he asked his cousin to make him a drum set coffee table. When the table was unveiled, Paul was blown away. It truly is a masterpiece. Metal and scraps lovingly molded, welded, shaped, and crafted into a gleaming, amazing structure. The glass-topped coffee table represents Paul’s talent as a drummer for the band Halfway Gone. It also lights up and includes a dimmer switch. But the thing that touched Paul the most was the MitoAction logo on the pedal. He never asked for that to be included, but Eric knew. “He took it upon himself to take into account … MitoAction, which is very personal to me and my family,” said Paul, who is president of the MitoAction board of directors. “I was blown away by his level of thought. “MitoAction is a big part of our lives and I thought it was a really special gesture for him to include it in an art piece.” One of Paul’s four kids — Matthew, age 6 (with Michael, 10, Gabby, 6, and Rebecca, 12, at left) — has mitochondrial disease, specifically Pyruvate Dehydrogenase Deficiency. “I just know how important MitoAction is to him and Matthew,” Eric said. “It made sense to include it on the table.” For Paul’s table, Eric used file cabinets, bars from engine crates, pieces of duct work, and frames. It is proudly on display in Paul’s living room in North Andover, MA. Eric’s up-and-coming business is called 2nd Chance Recycled Metal Art and is located in Antrim, NH. He gives new life to discarded scraps. Second chance also describes Eric (right), who himself has been given one, thanks to the love from his family. “I was trying to figure out a path to go in,” he said. “I was going down a lousy road but I was able to get help to better myself.” A couple of months in a recovery center for alcoholism changed his life. He’s been clean and sober for almost two years. During his recovery, he reevaluated himself, focusing on what he wanted to do with his life. He returned to his job as a cook and at the same time looked into an automotive career. It was during his research into cars that he came across welding. While interning at a mechanic’s shop, he watched as his mentor welded a muffler onto a car. “That was it,” Eric said. “It was totally cool.” And he was hooked. Eric has a natural ability to turn scraps into art. He’s always had an artistic side. He hopes to one day turn his metal work into a full-time gig. His shop is set up in his house, which he bought from a glass blower, so the place was already equipped. And out front, he has a 9-foot skeleton creature he created called Alfonso. For Eric, “second chance” is the theme of every day and he’s living life to the fullest. Eric calls working with metal magical. Paul, for one, gets to experience that magic every day. For more information or to commission a piece from Eric, email him at[ eharty@live.com](eharty@live.com) or call 603-831-3132. You can check out his smaller scale work on etsy.com at [http://www.etsy.com/shop/2ndChanceMetalArt?ref=seller\_info](http://www.etsy.com/shop/2ndChanceMetalArt?ref=seller_info). **Categories:** Patient Spotlight --- ### [Mito "Maine"-iacs Captain Feels Freedom at Walk](https://www.mitoaction.org/mito-maine-iacs-captain-feels-freedom-at-walk/) **Published:** October 21, 2019 **Author:** Sarah Harty **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Health and family issues kept Sheridan Johnston from attending the last few MitoAction Energy Walks but this year a healthier Sheridan is rarin’ to go! Sheridan is thrilled to feel that walk “vibe” again. “There are no words to describe what it feels like to be a patient on that day,” she said. “There’s some sort of freedom on that day … being around people like me. There’s a camaraderie that’s instantly felt. We build each other up.” Health and family issues kept Sheridan Johnston from attending the last few MitoAction Energy Walks but this year a healthier Sheridan is rarin’ to go! Sheridan is thrilled to feel that walk “vibe” again. “There are no words to describe what it feels like to be a patient on that day,” she said. “There’s some sort of freedom on that day … being around people like me. There’s a camaraderie that’s instantly felt. We build each other up.” Sheridan and some family members were sitting around a campfire when she got an email from MitoAction about this year’s event. She asked her family right then if they wanted to do it and they told her to sign up right now! So she did. The Mito “Maine”iacs – and all their funky props — are back! And for the first time, Sheridan won’t be using a wheelchair, a walker, or a cane at the walk. The MitoAction Energy Walk & 5K, presented by Stealth BioTherapeutics, will be held Sunday, Sept. 17, 2017, at DCR’s Mother’s Rest in South Boston, MA. This family-friendly event, designed to raise awareness about mitochondrial disease and funds for MitoAction, features a walk, a scenic 5K, and a day of fun for all ages and abilities. For more information and to register as a walker, runner, or virtual participant, visit [www.mitoaction.org/energywalk](https://www.mitoaction.org/energywalk). Sheridan attended her first MitoAction walk about a year after her mitochondrial disease diagnosis. “Back then, I wanted to connect with other people with Mito,” she said from her Westbrook, ME, home. “I wanted to get a feel for the community.” She said she was awestruck at her first walk, knowing that she didn’t have to explain herself to anyone because everyone around her knew what she was going through. She remembers feeling: “I am surrounded by people who totally get me … for the first time.” Mitochondrial disease is a chronic genetic disease that can be present at birth or develop later in life. Targeting the higher energy requiring body systems, Mito causes debilitating physical, developmental, and cognitive disabilities. Symptoms may include: poor growth, loss of muscle coordination, muscle weakness and pain, seizures, vision and/or hearing loss, gastrointestinal issues, learning disabilities, and heart, liver, or kidney failure. Approximately 1 in 4,000 people lives with Mito. This disease is progressive and has no cure. This year Sheridan is looking forward to reconnecting with people she hasn’t seen in a while and meeting new people. Raising awareness is also a highlight of the walk for Sheridan. “We’re raising money to put the words \[mitochondrial disease\] in front of doctors and researchers and keep the diagnosis in the forefront as best we can,” she said. MitoAction is a nonprofit organization dedicated to improving the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, and clinical research initiatives. Proceeds from the walk fund MitoAction programs and resources that help families living with mitochondrial disease, including the Mito 411 help line, Marcel’s Way Family Fund, monthly speaker series and weekly support groups, comprehensive website and iTunes library, educational programming, advocacy efforts, and so much more For more information, email walk@mitoaction.org or call 888-648-6228. To register, visit [www.mitoaction.org/energywalk](https://www.mitoaction.org/energywalk). To learn more about MitoAction, please visit [www.MitoAction.org](https://www.mitoaction.org). **Categories:** Patient Spotlight --- ### [9-Year-Old Mito Warrior on a Mission](https://www.mitoaction.org/9-year-old-mito-warrior-on-a-mission/) **Published:** October 22, 2019 **Author:** Sarah Harty **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The Mito Warrior of Fultonville, NY, will be in Boston for his very first MitoAction Energy Walk & 5K this year and hopes to meet other kids just like him. He couldn’t attend last year’s walk because his friends and family were holding a benefit for him on the same day. Since his family and friends helped him, Ethan Allen, 9, wants to give back and help others. He is raising money for kids just like him who have mitochondrial disease by collecting bottles and cans. He will give all the proceeds to MitoAction on behalf of his team, Mito Warrior’s Platoon, to help Mito families. The 10th annual MitoAction Energy Walk & 5K, presented by America’s Compounding Center, will be held Sunday, Sept. 14, 2014 at DCR’s Mother’s Rest in South Boston, MA. For more information and to register, please visit[ www.mitoaction.org/energywalk](https://www.mitoaction.org/energywalk). Mitochondrial disease is an inherited chronic illness that can be present at birth or develop later in life. It causes debilitating physical, developmental, and mental disabilities with symptoms including poor growth; loss of muscle coordination; muscle weakness and pain; seizures; vision and/or hearing loss; gastrointestinal issues; learning disabilities; and heart, liver, or kidney failure. About 1 in 2,000 people has Mito. It’s progressive and there is no cure. Ethan’s diagnosis is mitochondrial disease, complex IV. He has severe asthma, learning disabilities, low muscle tone, as well as neurological, heart, brain, and sensory issues. He’s been sick most of his life but the Mito diagnosis didn’t come until February 2012. “He looks normal on the outside, but he is sick on the inside,” said Ethan’s mom, Jamie. “But he always has a smile on his face. He’ll never say he’s not feeling good. He always says, ‘Never give up.’” Ethan has collected bottles and cans before, so he thought it would be a good fundraiser for his MitoAction team. He has partnered with the Fultonville Redemption Center, so in addition to helping other Mito kids, he’s also helping a local business that just started up this year. “He has such a good heart,” Jamie said. “He just wants to help others.” The Allen family, including mom Jamie, dad Robert, sister Madison, and grandparents Mary Ellen and Vernon Francisco, have been busy helping Ethan raise money for MitoAction and awareness about mitochondrial disease. Ethan has set up information booths at the Fonda Speedway and at an Amsterdam Mohawks playoff baseball game. At each event, Ethan puts up a table with information about mitochondrial disease, the MitoAction walk, and his bottle and can drive, as well as a donation jar and the science project he did for school on mitochondrial disease. Ethan and Jamie will also be talking to the organizers of a local fair to see if special collections bins can be set up for Ethan’s drive. Ethan has also become a bit of a local celebrity, appearing on radio and TV and in newspaper articles talking about his project, Mito, and the MitoAction walk! The usually shy boy has really opened up since starting his drive because he knows that raising awareness about his disease is vital. Ethan’s big collection event, held on Aug. 2 at the Fultonville Redemption Center, included a bake sale, a lemonade stand, a bracelet sale, and more. It raised almost $1,000, bringing his total as of Aug. 2 to $2,543.15 for Mito Warrior’s Platoon. And he’ll keep going! Ethan’s initial goal was to raise $1,000 for MitoAction by the time of the walk. But he easily surpassed that. So Jamie and Robert decided to give Ethan incentives. At $1,000, he wanted his grandmother, Mary Ellen, to shave her head just like his. And she did! At $2,000, Jamie and Robert will get matching tattoos. They are leaning toward a Superman symbol in bright green (Ethan’s favorite Mito color) with E in the middle for Ethan’s nickname. Incentives are in the works for hitting $3,000. The whole Allen family plans to come to Boston every year for the walk. They also have a lot of virtual walkers who can’t make it to Boston for the day so they’ll walk with them in spirit. The Allens also plan to host their own MitoAction walk in the Fultonville area each year. MitoAction holds a special place in the Allen family’s hearts. They got a ton of information and help from www.mitoaction.org for Ethan’s school plan. “MitoAction is the voice of the mitochondrial disease patient community, and we are inspired by the teams, families, sponsors, and individuals who come together each year to support this event,” said Cristy Balcells, MitoAction’s Executive Director. “For us, celebrating the 10th anniversary of the MitoAction Energy Walk & 5K signifies much more than excitement about an annual event. September 14th is a celebration of the heroes in our community, of our shared successes and frustrations, and of tremendous growth. We are proud to walk together and to raise awareness in Boston about mitochondrial disease.” Like the 1,200 patients and families who attend the annual MitoAction walk, Ethan is looking forward to meeting other people just like him and the sense of community, support, and camaraderie that brings. The walk is presented by America’s Compounding Center and sponsored by Stealth Peptides, Courtagen Life Sciences, Inc., ThriveRx, Acton Pharmacy, and Deep River Snacks. Proceeds from the walk/5K benefit MitoAction, a Boston-based 501(c)(3) dedicated to improving the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, and clinical research initiatives. Learn more at[ www.MitoAction.org](https://www.mitoaction.org). For more information, email or call 888-648-6228. To register, visit [www.mitoaction.org/energywalk](https://www.mitoaction.org/energywalk). **Categories:** Patient Spotlight --- ### [Erica Blanchette Defining Her Career Path](https://www.mitoaction.org/erica-blanchette-defining-her-career-path/) **Published:** October 22, 2019 **Author:** Sarah Harty **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ### Matthew Harty Scholarship update: Erica Blanchette Erica Blanchette was honored to be the first Matthew Harty Scholarship recipient. “I hope it inspires others with Mito,” she said at the time of the award in 2015. “This proves you can go to college and do other things that people never thought you could do.” The daughter of Loree and Ralph Blanchette of Peabody, MA, has one year left on her early childhood degree from North Shore Community College in Danvers, MA. Erica was diagnosed with mitochondrial myopathy at age 10 and deals with low energy, low muscle tone, autonomic dysfunction, and other issues. She entered college unsure if teaching was a realistic option for her. For the last couple of semesters, Erica has been student teaching and it’s going well. Through this experience, she is defining her career path. “We weren’t sure if it was realistic for me to handle student teaching,” she said, “but it shows that I may not be able to handle full-time \[teaching\], but it’s definitely possible for me to work part time.” Erica hopes to become a part-time teacher’s assistant at a preschool. “I realized being a lead preschool teacher calls for physical requirements. I’m not sure that’s possible for me,” she said. “I was upset about that at first.” But her mom, who taught preschool, told her that if she’s a teaching assistant, she’ll still have fun with the kids but she won’t have to do the lesson planning. “I like working with preschool kids because it’s never the same thing,” Erica said. “You never know what to expect from day to day.” Because of her own medical difficulties, Erica feels she will be a very compassionate, understanding, sympathetic, and patient teacher. “I have a passion for teaching others, and I can relate to struggling students. I will do everything I can to help them learn and make things easier for them if they are struggling.” “Erica has always had a kind heart and children were always drawn to her,” said her mom. “Often at doctor’s appointments, children of various ages would approach her and she would just interact with them automatically. She really seems to have found her calling and it is really exciting to see her confidence grow.” Erica used some of her scholarship money to get an iPad for classes. “It definitely made life easier in college,” she said. “Taking notes by hand is difficult and time-consuming.” She breaks up projects and papers so she’s not doing too much in one day. “I use technology when I can to make things easier. And I’m learning how to budget my time.” Her first year of school went really well. In fact, it was easier than high school because she could schedule her classes later in the day. “Mornings are difficult for me,” said the Peabody Veterans Memorial High School graduate. “In the mornings, I don’t have a lot of energy.” Erica is able to get more done in the afternoons when she has more energy. Erica has another year of classes left to take. She takes only 2-3 classes at a time because of her health. “I don’t want to overwhelm myself too much.” This last year was particularly difficult for Erica. She worked through health challenges, grieving the loss of her grandfather, and changes with her medical team, Loree said. “She still managed to stay on track with her classes. We are very proud of her.” Some teachers don’t understand her limitations, but when she explains her reasons for why she can’t do something, they say it makes sense. In that way, Erica is raising awareness about Mito. She’s also written papers for classes on disability awareness. In a science class she took last year, she did speeches about living with a chronic illness. “One of my things is trying to explain Mito to people without overwhelming them, but make them understand it at the same time,” she said. And that’s what teaching is all about. For more information on the Matthew Harty Scholarship please visit here: [www.mitoaction.org/matthew-harty-camper-fund-scholarship](https://www.mitoaction.org/matthew-harty-camper-fund-scholarship) **Categories:** Uncategorized --- ### [Walk Will be Emotional for New Mito Mom](https://www.mitoaction.org/walk-will-be-emotional-for-new-mito-mom/) **Published:** October 22, 2019 **Author:** Sarah Harty **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Stephanie Deady is a little apprehensive about attending her first MitoAction Energy Walk & 5K. It’s been a whirlwind year since her son, Logan, was diagnosed with mitochondrial disease and she still hasn’t processed it all. “Being around so many people with similar issues makes it so real,” said the North Providence, RI, mom. “I wake up and I just do it. I just move forward, because I have to. When I stop and think about it, the tears will come. I want to meet other people, but I don’t want to cry.” Stephanie will find support and friendship at MitoAction’s 10th annual Energy Walk & 5K, presented by America’s Compounding Center, on Sunday, Sept. 14, 2014 at DCR’s Mother’s Rest in South Boston, MA. Register today at[ www.mitoaction.org/energywalk](https://www.mitoaction.org/energywalk). Stephanie heard about MitoAction while Logan was at Mass General. She saw a flyer for Mito Support of New England and looked up MitoAction and found information about the walk. Because she was so swamped with Logan, Stephanie’s sister, Stacy, started the team Logan’s Heroes and has run with it. Mitochondrial disease is an inherited chronic illness that can be present at birth or develop later in life. It causes debilitating physical, developmental, and mental disabilities with symptoms including poor growth; loss of muscle coordination; muscle weakness and pain; seizures; vision and/or hearing loss; gastrointestinal issues; learning disabilities; and heart, liver, or kidney failure. About 1 in 2,000 people has Mito. It’s progressive and there is no cure. Logan’s Mito journey started when he was about 8 months old. When Stephanie stopped breastfeeding and Logan was introduced to regular food, he acted like “a drunk baby,” his mom said. He started waking up from naps in a state of terror. He would just shake. Everything started going downhill at age 15 months. During bath time, his body would lose control and it would take two people to bathe him. He couldn’t even hold his head up. He lost muscular control and his neurological system was under attack. He also experienced body jerking, convulsions, projectile vomiting, and seizures. He actually shrunk in height and weight. Stephanie said he almost died several times. Logan, now 2, was hospitalized for long periods of time. Doctors did every test they could think of. Stephanie even went through all the products in her home. By this time, Logan had a team of about 30 doctors, who finally determined that Logan had mitochondrial disease, specifically a vitamin deficiency (thyamine). When Stephanie asked the group what Mito meant, they all got quiet, she said. “I knew it was bad news coming. “They said the outcome for kids with Mito is not very good. They don’t normally live past childhood.” Stephanie started shaking, it felt like the walls were closing in, and she ran out of the room. “Part of me died that day. I’ve never cried so hard in my life,” she said. It wasn’t until about 5 months later, in March 2014, that Stephanie learned that Logan has pyruvate dehydrogenase deficiency of mitochondrial etiology, hemizygous variant of unknown significance in the X linked PDH1A gene. He also has strabismus in both eyes associated with low muscle tone as well as lactic acidosis and hypotonia. Logan is on a ketogenic diet as well as various medications. He also sees a speech therapist, nutritionist, occupational therapist, social worker, and more. He’s actually walking now, even running. He doesn’t speak much yet but he’s very vocal. He loves kisses. He understands everything. He’s really smart and a great problem-solver. And he’ll hopefully be at the walk. But he also is frequently hospitalized at Hasbro Children’s Hospital for spontaneous illnesses that take him down hard and fast and take him longer to recover. “MitoAction is the voice of the mitochondrial disease patient community, and we are inspired by the teams, families, sponsors, and individuals who come together each year to support this event,” said Cristy Balcells, MitoAction’s Executive Director. “For us, celebrating the 10th anniversary of the MitoAction Energy Walk & 5K signifies much more than excitement about an annual event. September 14th is a celebration of the heroes in our community, of our shared successes and frustrations, and of tremendous growth. We are proud to walk together and to raise awareness in Boston about mitochondrial disease.” While Stephanie is anxious about the walk, she’s looking forward to the community coming together for awareness. And according to team captain Stacy: “This event allows those who have been diagnosed and their family members to not feel alone, brings awareness to the public, and helps propel research. I’m proud and excited to join this group to support a cause that is unknown to most.” The event is presented by America’s Compounding Center and sponsored by Stealth Peptides, Courtagen Life Sciences, Inc., ThriveRx, Acton Pharmacy, and Deep River Snacks. Proceeds from the walk/5K benefit MitoAction, a Boston-based 501(c)(3) dedicated to improving the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, and clinical research initiatives. Learn more at [www.MitoAction.org](https://www.mitoaction.org). For more information, email[ walk@mitoaction.org](mailto:walk@mitoaction.org) or call 888-648-6228. To register, visit [www.mitoaction.org/energywalk](https://www.mitoaction.org/energywalk/). **Categories:** Patient Spotlight --- ## Pages ### [Homepage](https://www.mitoaction.org/) **Published:** August 9, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") #### [I Think I Have Mito. Now What?](https://www.mitoaction.org/mitochondrial-disease/i-think-i-have-mito-now-what/) We’ve gathered all the basic information in one place, including educational resources, diagnosis information, clinical trial information, and more. [Get Started](https://www.mitoaction.org/mitochondrial-disease/i-think-i-have-mito-now-what/) #### [Need Support on your Journey with Mito?](https://www.mitoaction.org/programs-support/support/) Call [1-888-MITO-411](tel:+18886486411) to speak with an experienced volunteer, or check out our Events Calendar for [upcoming support group meetings](https://www.mitoaction.org/calendar/category/support-calls/). ![](https://www.mitoaction.org/wp-content/uploads/2026/03/MitoAction-Energy-Walk-2025-–-Syracuse-–-6058064471874640575_n-1024x683.webp) ## Mitochondrial Disease Awareness Week, September 14-20, 2026! Join the mito disease community in raising awareness for mitochondrial disease. Attend a webinar, wear some green, display graphics on your social media profiles, and help us spread the word! [Learn More About Awareness Week](https://www.mitoaction.org/join-the-cause/raise-your-voice/awareness-week/ "Learn More About Awareness Week") ![](https://www.mitoaction.org/wp-content/uploads/2026/09/Hole-in-the-Wall-Gang-Camp-1024x683.webp) ## Join the Hole in the Wall Gang Camp October 23-25, 2026! Join The Hole in the Wall Gang Camp for Metabolic Family Camp, October 23–25, 2026, in Queenstown, Maryland. Eligible families can enjoy a free weekend to relax, reconnect, and spend time with other kids and families who get it. [Register](https://holeinthewallgang.my.site.com/s/login/?ec=302&startURL=%2Fs%2Fqueenstown-camp) ![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-30-1024x683.webp) ## Help Raise Awareness and Funds for Mito! One Step at a Time! Join us to raise awareness and funds for mito—one step at a time! This year we have Energy Walks in New York, Massachusetts, Texas, Florida, and California! Find one near you! [Learn More](https://www.mitoaction.org/events/energywalk/) ![Man sits at a desk taking notes while participating in a video conference on a laptop showing multiple participants in a grid view.](https://www.mitoaction.org/wp-content/uploads/2026/06/MitoAction-Educational-Series-for-Genetic-Counselors--A-Man-Taking-Notes-While-on-a-Virtual-Webinar-1024x683.webp) ## CEUs for Genetic Counselors Register now for a nine part virtual webinar series designed to prepare genetic counselors and other clinicians across specialties to recognize, counsel, and support individuals and families affected by mitochondrial disease. Eligible for CEUs up to 9.5 contact hours! [Learn More](https://www.mitoaction.org/for-medical-professionals/mitoaction-educational-series-for-genetic-counselors/ "MitoAction Educational Series for Genetic Counselors") [Register](https://events.ringcentral.com/events/2026-mitoaction-educational-series-for-genetic-counselors/registration) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/2022-MitoAction-Energy-Walk-at-Franklin-Zoo-scaled.jpg) # Welcome to MitoAction MitoAction’s mission is to improve the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, clinical research initiatives and by granting wishes for children affected by mitochondrial disease. We strive to make a measurable impact in the lives of those who are affected by mitochondrial disease. ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Icon-Support.png)### Support Providing families, patients and caregivers opportunities to connect with others who share common experiences with mitochondrial disease. **[READ MORE](https://www.mitoaction.org/programs-support/)** ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Icon-Educate.png)### Educate Increasing the understanding of mitochondrial disease by providing access to the most up-to-date and accurate information available. **[READ MORE](https://www.mitoaction.org/education/)** ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Icon-Advocate.png)### Advocate Empowering the mitochondrial disease community with the tools needed to let their voices be heard for their individual healthcare needs. **[READ MORE](https://www.mitoaction.org/join-the-cause/raise-your-voice/advocacy/)** ## MitoAction Programs & Support [Mito411](https://www.mitoaction.org/programs-support/patient-and-family-support/mito411/) [Monthly Expert Series](https://www.mitoaction.org/education/monthly-expert-series/) [MyMito App](https://www.mitoaction.org/mymito-app/) [Support Calls](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/) [Show All Programs & Support](https://www.mitoaction.org/programs-support/) Load More Our Impact **At a Glance** [Donate Today](https://www.mitoaction.org/join-the-cause/giving/donate/) ### 1,800+ Mito411 Support Calls logged in 2022 ### 18+ years serving families facing the daily struggles of mitochondrial disease ### **45+** scholarships granted to young adults with mito pursuing a college degree --- ### [2026 MitoSantas Application](https://www.mitoaction.org/programs-support/mitoaction-programs/mito-santas/2026-mitosantas-application/) **Published:** October 22, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Please fill out a separate application for each child. Applications can be submitted for **children 18 and younger affected by mitochondrial disease and siblings 16 and younger** who are not affected. The spending limit is **$50 per child**. **Help our MitoSantas elves find the perfect gifts!** Please be as detailed as possible when listing your child’s interests, hobbies, favorite items, or specific requests. Including specific brands, styles, colors, sizes, and direct website links helps our donors fulfill your child’s wishlist accurately. ### Applications must be submitted **no later than 5:00 pm EST on November 20, 2026.** Submitting an application does not guarantee approval for the MitoSantas program "\*" indicates required fields CommentsThis field is for validation purposes and should be left unchanged. Your Name\* First Last Email\* Phone\* Shipping Address\*This is the address where your child’s gifts will be sent between now and December 20th. Street Address Address Line 2 City State / Province / Region ZIP / Postal Code Child's Name\* First Last Is the child a past recipient of the MitoSantas program?\* Yes No If YES, which years was the child a recipient?\* ### The following section should be answered about the above named child. Is the nominated child a patient or sibling?\*PatientSibling Does this child have mitochondrial disease?\*YesNo What is their specific diagnosis? Alper’s Disease Autosomal Dominante Optic Atrophy (ADOA) Barth Syndrome Beta-Oxidation Defects Carnitine Deficiency Chronic Progressive External Ophthalmoplegia (CPEO) Complex I Deficiency Complex II Deficiency Complex III Deficiency Complex IV Deficiency Complex V Deficiency CoQ10 Deficiency CPT I Deficiency CPT II Deficiency Creatine Deficiency Syndrome Fatty Acid Oxidation Disorders (FAOD) Friedreich’s Ataxia Kearns-Sayre Syndrome (KSS) Lactic Acidosis LCAD LCHAD Leigh’s Disease Leukodystrophy LHON LHON Plus Luft Disease MCAD MELAS MEPAN MERRF MIRAS Mitochondrial Cytophy Mitochondrial DNA Depletion Mitochondrial Encencephalopathy Mitochondrial Myopathy MNGIE Multiple Acyl-CoA Dehydrogenase Deficiency (MAD) Multiple Mitochondrial Dysfunction Syndrome NARP Pearson Syndrome POLG Mutations Primary Mitochondrial Myopathy Pyruvate Carboxylase Deficiency Pyruvate Dehydrogenase Deficiency Pyruvate Dhydrogenase Complex Deficiency (PDCD) SCAD SCHAD Thymidine Kinase 2 Deficiency (TK2) VLCAD Undiagnosed Other Does this child have any of the following special needs?\* Blindness Deafness Autism Developmental disabilities Other None Please indicate any additional special needs.\* Please indicate the name(s) of the patient associated with this sibling.\* Birthday\* Favorite Color\* Favorite Characters / Animals\* Favorite Sports Team(s)\* Favorite Snacks / Food Treats\*Please keep in mind that these are items that should be able to be mailed. Pant Size\*Please specify toddler, youth or adult Shirt Size\*Please specify toddler, youth or adult Shoe / Sock Size\*Please specify toddler, youth or adult Specific Gift Requests\*Please be as specific as you can and include brand, color, etc. Feel free to include links if available. You may list up to four items but remember the $50 limit. Please note first choice. Sometimes store pick-up is needed for gifts. Which of these stores, if any, are you able to pick up from? Please select all that apply.\* Target Walmart Best Buy Michaels None If chosen, we ask that you send us a picture(s) of your child with the gifts so that we can share them with our donors. No identifying information will be shared. Do you agree to allow us to share the pictures on our website, Facebook page or in emails to our donors?\*YesNo Would you like to sign up for our mailing list?\*Mito NewslettersFAOD NewslettersBoth Mito & FAOD Newsletters CAPTCHA Submit Save and Continue Later --- ### [Energy Walk and 5K - Syracuse, NY](https://www.mitoaction.org/events/energywalk/energywalksyracuse/) **Published:** October 1, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Energy Walks](https://www.mitoaction.org/events/energywalk/ "Energy Walk") # MitoAction Energy Walk — Syracuse, NY Join us to raise awareness and funds for mito—one step at a time! ![](https://www.mitoaction.org/wp-content/uploads/2026/03/MitoAction-Energy-Walk-2025-–-Syracuse-–-7675649419008577550_n-1024x683.webp) ## Sunday, September 27, 2026 **Green Lakes State Park, East Beach Area**, 7900 Green Lakes Rd, Fayetteville, NY 13066 Gather your team and get ready to go for a walk all together while raising awareness for mitochondrial disease! Whether you walk as an individual, create a team or volunteer, you’re making a difference in the lives of patients and families who rely on us. Your fundraising helps MitoAction change the future of health for every mito patient, here and around the world. Hosted by the Payne family in honor of their daughter Caroline, Energy Walk Syracuse has raised over $55,000 to raise awareness and support families impacted by mitochondrial disease. This family event offers support, friendship, and fun for everyone! The day’s highlights include: • Musical entertainment • Food & Refreshments • Unique raffle items • Kids’ arts & crafts • Sponsor activities • Team & individual awards • And so much more! Register, fund raise and **JOIN US**! [Register](https://p2p.onecause.com/syracuseenergywalk) ![](https://www.mitoaction.org/wp-content/uploads/2026/08/ad858da7-d509-4c0e-a704-1bfd0a164891-683x1024.png) ## 2025 Energy Walk Photos [![](https://www.mitoaction.org/wp-content/uploads/2026/03/MitoAction-Energy-Walk-2025-–-Syracuse-–-8956628743036061068_n-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/03/MitoAction-Energy-Walk-2025-–-Syracuse-–-8956628743036061068_n-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/03/MitoAction-Energy-Walk-2025-–-Syracuse-–-7675649419008577550_n-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/03/MitoAction-Energy-Walk-2025-–-Syracuse-–-7675649419008577550_n-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/03/MitoAction-Energy-Walk-2025-–-Syracuse-–-6058064471874640575_n-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/03/MitoAction-Energy-Walk-2025-–-Syracuse-–-6058064471874640575_n-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/03/MitoAction-Energy-Walk-2025-–-Syracuse-–-1081294580137479131_n-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/03/MitoAction-Energy-Walk-2025-–-Syracuse-–-1081294580137479131_n-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/03/MitoAction-Energy-Walk-2025-–-Syracuse-–-3933180856777322757_n-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/03/MitoAction-Energy-Walk-2025-–-Syracuse-–-3933180856777322757_n-scaled.webp) ### Meet Caroline Caroline Hope Payne was born 8 weeks premature in 2010, weighing only 2 lbs., 4 oz., resulting in a 47 day stay in the NICU. She is a twin and during pregnancy we discovered she had slow Doppler flow, poor growth, and a hole in her heart. The doctors told us that she would not make it, while her sister was thriving. Two days before the twins were born, the sonogram showed that she had reverse Doppler flow, which caused an immediate admission to the hospital. Regardless, Caroline came out shaking a fist and making the doctors laugh! In her newborn and toddler years, she missed all the typical milestones and wasn’t gaining weight. At 8 months old, she started physical, occupational, and speech therapy. When Caroline was around 3 years old, I noticed a story on Facebook about a girl with mitochondrial disease that had many of the same symptoms that Caroline seemed to have. I asked the pediatrician about mitochondrial disease and she said it wasn’t something we needed to worry about. Caroline had a brain MRI at 3 years old which came back showing no issues. But, then in January 2016, when Caroline was 5, a new MRI showed a “significant enlargement” in her brain that was diagnosed quickly as “probably a brain tumor.” This was cause for more testing and of course, more panic. Over a period of 3 days, we met with neurologists, oncologists, radiologists and a pediatric neuro surgeon. More and more doctors weighed in and determined that maybe it wasn’t a tumor after all. Our neurologist ordered a series of tests and diagnosed her with a probable metabolic or genetic condition. After another EEG, MRI, and multiple other tests, we were referred to the Center for Development, Behavior, and Genetics at Upstate University Hospital in February 2016 for an evaluation of a possible mitochondrial disorder. **On March 17, 2016, Caroline was officially diagnosed with mitochondrial disease with 2 mutations (ND-1 and ATP-8), as well as Leber’s Hereditary Optic Neuropathy.** Caroline is now 10 and a half years old and the smallest of 4 girls in our family. However, she likes to point out that she is 1 minute older than her twin sister! She makes friends and impressions everywhere we go. At school, she is often called “The Mayor.” She still receives physical and occupational therapy and deals with a heart condition and poor vision. She tires easily, but she doesn’t let that stop her from living life fiercely! She loves to read and watch cooking shows. She is a cheerleader on a special needs cheer team at an all-star gym. She continues to meet milestones, but on her own timeline. “Though she be but little” – she is a fighter and continues to persevere! Our “Tiny Liney” as we often call her continues to remind us that now matter her size, she is ***BIG*** and so is the impact she continues to make on everyone she meets. ![](https://www.mitoaction.org/wp-content/uploads/2021/06/Classy-Collage-Caroline.png) ## Thank You Sponsors and Donors! ### **Gold Sponsor** ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Image-8-27-26-at-218-PM-1.jpeg) **Silver Sponsors** [![](https://assets.classy.org/5181275/f8142502-2f0c-11ee-963a-0a58a9feac02.png)](https://gcfoods.com/) ![](https://www.mitoaction.org/wp-content/uploads/2025/07/images.png) [![](https://www.mitoaction.org/wp-content/uploads/2026/08/CBNALgo_H_Blk_RGB-1024x102.png)](https://cbna.com/) [![](https://www.mitoaction.org/wp-content/uploads/2026/08/onc-logo-1.png)](https://operationnc.org/) ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Melo-Roofing.png) ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Indera.png) **Bronze Sponsor** ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Image-8-18-26-at-129-PM.jpeg) ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Image-8-18-26-at-129-PM-1.jpeg) [![](https://www.mitoaction.org/wp-content/uploads/2026/09/MIPeds_Logo-removebg-preview-372w.webp)](https://www.mipeds.net/) **Media Sponsor** ![](https://www.mitoaction.org/wp-content/uploads/2026/08/dino-logo-1-1.png) ### In-kind Donors Charlotte McPherson New York Jets Lola Blankets Sweet Wink Tully’s Great Food & Good Times SendAFriend Big Moods Onondaga County Parks Oh Clementine Enabling Devices Rosamond Gifford Zoo Dojo Buffalo Trace Distillery Five Iron Golf RetroGameCon Jeanne Waclena shortyLOVE bags Cards Against Humanity BEX Sunglasses Fit + Fresh Pittsburgh Steelers Skill Shot Arcade Seneca Niagara Resort & Casino Seneca Allegany Resort & Casino Seneca Buffalo Creek Casino MadMia Rhonda Payne Beginnings Credit Union Ohuhuart Sok-It Crown Maple Syrup Chipotle Mexican Grill 30 Second Dance Party DreamJellie Lotus Trolley Bag Cutco Cutlery Melissa Swem Kristen Woodcock Pepsi McDonald’s of Fayetteville US Ghost Adventures MINT & LILY Maxwells Holiday Inn Saratoga Springs Tru by Hilton A.W. Wander Crayola Experience The Strong Museum Uncle Sam Boat Tours Maid of the Mist Splash Indoor Water Park Resort Linear Collective Shady Rays Sand Cloud Resparked Minky Couture Syracuse Stage Hand In Health Massage Therapy ISkydive New York City Dune Jewelry Salem Wax The Salem Witch Village Marcus Theatres Mixtiles Coma Inducer Wegman’s Stewart’s Shops St. James Organic Brewed Tea Cheri Fitzgerald Bryce’s Brigade Haza Foods/Wendy’s Erin Greco Eric Payne Photography Spartan Sound Machine ESM School District Splish Splash Water Park Hotel Indigo The Hawthorne Hotel Ganz Gifts Tim’s Pumpkin Patch SeaBreeze Amusement Park Hyatt Place Buffalo Burn Kickboxing Drip Drop Saratoga National Golf Club PiruCream Tubby Todd Real Pirates Salem Connetix Chick-Fil-A Cicero Chick-Fil-A Bridge Street & Erie Blvd Syracuse Mets Syracuse Crunch G&L Davis Meat Co. (Gianelli Sausage) Beak & Skiff True Lemon/True Citrus CrunchMaster of TH Foods Inc --- ### [Open Mito Mic & Art Show](https://www.mitoaction.org/join-the-cause/raise-your-voice/open-mito-mic-art-show/) **Published:** November 8, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Raise Your Voice](https://www.mitoaction.org/join-the-cause/raise-your-voice/ "Raise Your Voice") # Open Mito Mic & Art Show The Mito Mic & Art Show is a place for all those mito creators out there to share pieces of their journey to the rest of the community. ![](https://www.mitoaction.org/wp-content/uploads/2025/03/Open-Mic-—-MitoAction-1024x683.webp) ![](https://www.mitoaction.org/wp-content/uploads/2026/09/2026-Art-Show-2-1024x1024.png)Beauty and healing occur when we come together and share bits of our journey! The Open Mito Mic & Art Show is a place for all of our mito creators to share pieces of their journey to the rest of the community. People share poetry, paintings, music, quilting and more! Click **[HERE](https://www.mitoaction.org/mitoaction-events/open-mito-mic-art-show-2/)** to learn more about this year’s Art Show! ## Past Shows 2025 2024 2023 For more information and any inquiries, please email . [Email for Art Show Inquiries!](mailto:sharry@mitoaction.org) --- ### [Externally Led Patient-Focused Drug Development Meetings](https://www.mitoaction.org/join-the-cause/patient-focused-drug-development-meetings/) **Published:** April 8, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Join the Cause](https://www.mitoaction.org/join-the-cause/ "Back to Join the Cause") # Externally Led Patient-Focused Drug Development (PFDD) Meetings PFDD Meetings help shape the future of mitochondrial disease care and treatment. ![](https://www.mitoaction.org/wp-content/uploads/2025/05/Group-of-Friends-—-Make-Your-Voice-Heard-—-MitoAction-1024x585.webp) Externally-led Patient-Focused Drug Development Meetings give the FDA and other key stakeholders an opportunity to hear directly from patients, their families, caregivers, and patient advocates. These meetings allow the mito community to talk about that symptoms that matter most to them, the impact the disease has on patients’ daily lives, and patients’ experiences with currently available treatments. These meetings help shape the future of mitochondrial disease care and treatment. ## Upcoming PFDD Meetings [PCQD (Primary CoQ10 Deficiency)](https://www.mitoaction.org/join-the-cause/patient-focused-drug-development-meetings/externally-led-patient-focused-drug-development-meeting-on-pcqd/) [POLG](https://www.mitoaction.org/join-the-cause/patient-focused-drug-development-meetings/patient-focused-drug-development-meeting-on-polg/) ## Past PFDD Meetings [MELAS](https://www.mitoaction.org/join-the-cause/patient-focused-drug-development-meetings/patient-focused-drug-development-meeting-on-melas/) ## Frequently Asked Questions What is an Externally Led Patient-Focused Drug Development (PFDD) meeting?Externally-led Patient-Focused Drug Development meetings give the FDA and other key stakeholders—including medical product developers, health care providers, and federal partners—an important opportunity to hear directly from patients, their families, caregivers, and patient advocates about the symptoms that matter most to them, the impact the disease has on patients’ daily lives, and patients’ experiences with currently available treatments. This input can inform the FDA’s decisions and oversight both during drug development and during review of a marketing application. Why should I participate in a PFDD meeting?This PFDD meeting is a critical opportunity to elevate the voice of those impacted by MELAS, helping the FDA and other key stakeholders understand the real-life burden of this complex and progressive mitochondrial disorder. Insights shared during the meeting will help guide future research, therapy development, and regulatory decisions. MitoAction will be working alongside advocacy partners including UMDF, IMP, and MDA among others to bring this meeting forward. What is the outcome from PFDD meetings? Following the PFDD meeting, MitoAction will summarize the input shared by patients and patient representatives in a Voice of the Patient report, which will be shared with the FDA and other key stakeholders. Clinicians, researchers, and industry partners will continue to refer to the summary report as they work on new therapies and treatments. Links to meeting materials, including transcripts, webcast recordings, presentation slides, and Voice of the Patient reports can be found on the Condition-Specific Meeting Reports webpage. --- ### [Energy Walk - Boston, MA](https://www.mitoaction.org/events/energywalk/energywalkboston/) **Published:** May 23, 2019 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Energy Walks](https://www.mitoaction.org/events/energywalk/ "Energy Walk") # MitoAction Energy Walk — Boston, MA Join us to raise awareness and funds for mito—one step at a time! ![](https://www.mitoaction.org/wp-content/uploads/2023/02/Matthew-Hearty-Camper-Events-Featured-Image-Boston-Energy-Walk-1024x683.jpg) ## Saturday, September 26, 2026 **UMass Boston** Join us at UMass Boston for the 21st annual MitoAction Energy Walk & 5k! Gather your team and get ready to go for a walk together while raising awareness and supporting those impacted by mitochondrial disease! Whether you walk as an individual, create a team, or volunteer, you are making a difference in the lives of patients and families who rely upon us. This family event offers support, friendship, and fun for everyone! [Register](https://p2p.onecause.com/bostonenergywalk) ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Image-10-1-819x1024.jpeg) ## 2025 Energy Walk Photos [![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-713-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-713-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-640-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-640-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-41-683x1024.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-41-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/08/091122_Mito_Franklin_Zoo_Read-142-X4-683x1024.jpg)](https://www.mitoaction.org/wp-content/uploads/2026/08/091122_Mito_Franklin_Zoo_Read-142-X4.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-30-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-30-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-25-683x1024.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-25-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-12-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-12-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-2-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-2-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-67-683x1024.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-67-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-143-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-143-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-167-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-167-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-362-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-362-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-305-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-305-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-286-683x1024.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-286-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-527-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-527-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-485-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-485-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-113-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-113-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-133-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-133-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-72-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-72-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-211-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-211-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-460-683x1024.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-460-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-444-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-444-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-179-683x1024.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-179-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-273-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-273-scaled.webp)![](https://www.mitoaction.org/wp-content/uploads/2026/08/091122_Mito_Franklin_Zoo_Read-160-X4-1-683x1024.jpg) ## Thank You Sponsors and Donors! #### Presenting Sponsors [![UCB logo](https://www.mitoaction.org/wp-content/uploads/2026/08/ucb-2-1024x1024.png)](https://www.ucb.com/) #### Emerald Sponsor #### **Platinum Sponsor** ![logo for bpg bio](https://www.mitoaction.org/wp-content/uploads/2026/08/logo-1024x347.png) ![](https://www.mitoaction.org/wp-content/uploads/2026/09/20Mighty20Therapeutics20-20Horizontal20color20logo_white20BG-2-1024x398.jpg) #### Gold Sponsor ![](https://www.mitoaction.org/wp-content/uploads/2024/04/Ultragenyx-1024x423.png) #### Silver Sponsor ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Image-8-12-26-at-306-PM-1024x974.jpeg) #### In-Kind Donations ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Image-8-18-26-at-216-PM-1024x279.jpeg) ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Image-8-18-26-at-222-PM.jpeg) ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Image-8-18-26-at-225-PM.jpeg) ![](https://www.mitoaction.org/wp-content/uploads/2026/08/MalloryPortraits_LOGO-1024x455.jpg) **Charles River Boat Company** **Boston Aquarium** **Stop & Shop – East Broadway** **Stop & Shop – Blue Hill Avenue** **Stop & Shop – Freeport Street** **Stop & Shop – Newport Street** **Stop & Shop – Centre Street** **Stop & Shop – Massachusetts Avenue** **Rock Spot Climbing** **Chipotle** **Costco** **Home Depot** **Candlefish** **Commonwealth Wine School** **Dan Doke Photography** **European Wax Center** **Heyday Boston** **Wood & Tap** **Club Pilates Assembly Row** **Club Pilates Back Bay** **Trader Joe’s – Boylston Street** **Trader Joe’s – North Harvard Street** **BJ’s** **Red Light Therapy Masks** **Goodtime Golf** **Mallory Portraits** --- ### [Mitochondrial Disease Awareness Week](https://www.mitoaction.org/join-the-cause/raise-your-voice/awareness-week/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Raise Your Voice](https://www.mitoaction.org/join-the-cause/raise-your-voice/ "Raise Your Voice") # Mitochondrial Disease Awareness Week Join the mitochondrial disease community September 14-20, 2026 and raise awareness during World Mitochondrial Disease Awareness Week! ![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-054-1024x808.jpg) ![](https://www.mitoaction.org/wp-content/uploads/2024/08/Mito-Awareness-Week-2024-1.png)[![](https://www.mitoaction.org/wp-content/uploads/2024/08/Mito-Awareness-Week-2024-2.png)](https://www.mitoaction.org/shop/)[![](https://www.mitoaction.org/wp-content/uploads/2024/08/Mito-Awareness-Week-2024-3.png)](#light-up-green-for-mito)[![](https://www.mitoaction.org/wp-content/uploads/2024/08/Mito-Awareness-Week-2024-4.png)](#spread-the-word)[![](https://www.mitoaction.org/wp-content/uploads/2024/08/Mito-Awareness-Week-2024-5.png)](https://www.mitoaction.org/join-the-cause/raise-your-voice/awareness-week/light-a-light/)![](https://www.mitoaction.org/wp-content/uploads/2024/08/Mito-Awareness-Week-2024-6.png) During the third week of September (Sept. 14 – Sept. 20, 2026), the global mitochondrial disease community will come together to raise awareness for the annual World Mitochondrial Disease Awareness Week. Thousands of families face the reality of living with mitochondrial disease. During Awareness Week, MitoAction and mito families from across the globe do their part to educate others about this rare disease. We believe that awareness is important year-round, but highlighting these issues during Mitochondrial Disease Awareness Week provides a time for people to come together and display the passion and strength of those working to improve the lives of individuals and their families affected by mito. There are many ways to get involved during Awareness Week. Check back soon for our 2026 resource guide and toolkit to give you ideas. To get involved in Awareness Week, email info@mitoaction.org. Share with us on [Facebook](https://www.facebook.com/mitoaction/) the ways in which you are spreading awareness! ## Light Up Green for Mito on September 19th! ![](https://www.mitoaction.org/wp-content/uploads/2024/08/Light-Up-Green-for-Mitochondrial-Disease-Awareness-Week-1-1024x575.jpg)Light up your home or porch this week with green light bulbs! It’s a great way to show your support and get a conversation about mito started with your neighbors and others in your community. This year, we’re making it even easier by offering green LED light bulbs right here on our website. Just use the form to the right to order a set of two bulbs for your home. [Print and hand out these flyers](https://www.mitoaction.org/wp-content/uploads/2026/08/LIGHTING-UP-FOR-MITO-flyer.png "Print and hand out these flyers") to help get the message out. #### Order Your Green Light Bulbs Each package contains two (2) green LED bulbs for a $15 donation. Use them on your porch or in your home to show your support! Please order by September 6th to ensure you get your lights on time! "\*" indicates required fields Step 1 of 3 33% NameThis field is for validation purposes and should be left unchanged. First Name\* Last Name\* Email\* Phone Next Shipping Address Street Address Address Line 2 City AlabamaAlaskaAmerican SamoaArizonaArkansasCaliforniaColoradoConnecticutDelawareDistrict of ColumbiaFloridaGeorgiaGuamHawaiiIdahoIllinoisIndianaIowaKansasKentuckyLouisianaMaineMarylandMassachusettsMichiganMinnesotaMississippiMissouriMontanaNebraskaNevadaNew HampshireNew JerseyNew MexicoNew YorkNorth CarolinaNorth DakotaNorthern Mariana IslandsOhioOklahomaOregonPennsylvaniaPuerto RicoRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUtahU.S. Virgin IslandsVermontVirginiaWashingtonWest VirginiaWisconsinWyomingArmed Forces AmericasArmed Forces EuropeArmed Forces Pacific State ZIP Code Billing Address Street Address Address Line 2 City AlabamaAlaskaAmerican SamoaArizonaArkansasCaliforniaColoradoConnecticutDelawareDistrict of ColumbiaFloridaGeorgiaGuamHawaiiIdahoIllinoisIndianaIowaKansasKentuckyLouisianaMaineMarylandMassachusettsMichiganMinnesotaMississippiMissouriMontanaNebraskaNevadaNew HampshireNew JerseyNew MexicoNew YorkNorth CarolinaNorth DakotaNorthern Mariana IslandsOhioOklahomaOregonPennsylvaniaPuerto RicoRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUtahU.S. Virgin IslandsVermontVirginiaWashingtonWest VirginiaWisconsinWyomingArmed Forces AmericasArmed Forces EuropeArmed Forces Pacific State ZIP Code Previous Next Green Light Bulbs\*Each pack contains 2 green LED light bulbs. Price: Number of Bulb Packs\*Each pack contains 2 green LED light bulbs. Additional Donation Amount Total Donation Credit CardCredit Card American Express Discover MasterCard Visa Supported Credit Cards: American Express, Discover, MasterCard, Visa Card Number Expiration Date Security Code Cardholder Name Would you like to sign up for our mailing list?Mito NewslettersFAOD NewslettersBoth Mito & FAOD Newsletters CAPTCHA Previous Order Bulbs ## Spread the Word #### TK2D Awareness Day **Tuesday, September 8** Share these graphics on your social media to raise awareness of TK2d and the challenges these families face each day. [Learn More](https://www.mitoaction.org/join-the-cause/raise-your-voice/awareness-week/tk2d-awareness-week/) #### MitoArtisan’s Playtime **Sunday, September 13** Join MitoChampion Christine Knox as she guides us in drawing a Zebra butterfly and exploring the beautiful metaphors it represents! [Learn More](https://www.mitoaction.org/resources/mitoartisans-playtime-course-10-zebra-butterfly/) #### Seeing Beyond the Diagnosis: Life with Mito **Monday, September 14** Join MitoAction for a webinar to learn more about the patient diagnostic and treatment journey. [Learn More](https://www.mitoaction.org/mitoaction-events/seeing-beyond-the-diagnosis-life-with-mito/) #### MitoAction Memories **Wednesday, September 16** Remember those who have lost the battle with mito by “Lighting a Light” in their memory. [Learn More](https://www.mitoaction.org/programs-support/patient-and-family-support/memories/) #### LHON Awareness Day **Saturday, September 19** Join IMP for a webinar to explore the power of nutrition in mitochondrial diseases. [Register here!](https://us06web.zoom.us/meeting/register/j0HI2fPuSNao01o4swuujA#/registration) #### Social Media Graphics **All Week** Download awareness week graphics and share on your social media to help us raise awareness! [Learn More](https://www.mitoaction.org/join-the-cause/raise-your-voice/awareness-week/mito-facts/) --- ### [Externally Led Patient-Focused Drug Development Meeting on POLG](https://www.mitoaction.org/join-the-cause/patient-focused-drug-development-meetings/patient-focused-drug-development-meeting-on-polg/) **Published:** April 8, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to PFDD Meetings](https://www.mitoaction.org/join-the-cause/patient-focused-drug-development-meetings/ "Back to Section") # Externally Led Patient-Focused Drug Development Meeting on POLG MitoAction is honored to host a Patient-Focused Drug Development (PFDD) meeting focused on POLG. ![Externally Led Patient-Focused Drug Development Meeting on POLG](https://www.mitoaction.org/wp-content/uploads/2026/04/Externally-Led-Patient-Focused-Drug-Development-Meeting-on-POLG--MitoAction-1024x683.webp) MitoAction is honored to host an Externally Led [Patient-Focused Drug Development (PFDD) meeting](https://www.fda.gov/industry/prescription-drug-user-fee-amendments/upcoming-el-pfdd-meetings) focused on [POLG-Related Disorders](https://www.mitoaction.org/conditions/polg-related-disorders/). This meeting is open to all members of the mitochondrial disease community, including patients, caregivers, clinicians, researchers, and industry partners. > “For families impacted by POLG, time is precious. The POLG EL-PFDD meeting is a vital platform to bring forward the patient experience, highlight urgent unmet needs, and accelerate progress toward life-changing treatments.” > > Kira Mann, CEO of MitoAction Participants will be invited to share their experiences through live testimony, polling, and written comments. MitoAction encourages all individuals and families affected by POLG—and those who support them—to attend and be part of shaping the future of mitochondrial disease care and treatment. ## Share Your Story & Comments "\*" indicates required fields PhoneThis field is for validation purposes and should be left unchanged. Name\* First Last Email\* Phone What is your connection to mito?\* Patient Parent Spouse Caregiver Son Daughter Sibling Grandparent Grandchild Aunt Uncle Cousin Niece Nephew Friend Teacher/Educator Medical Professional Physician Nurse Genetic Counselor Social Worker Researcher Industry Rep Other Diagnosis typeGenetically ConfirmedClinical DiagnosisUndiagnosed What challenges have you faced with diagnosis? What day to day struggles do you experience as a result of the disease? What is your current treatment protocol for the disease? What issues have you faced with regard to treatment? In your own words, what is it like to live with POLG? What is the hardest part of living with POLG that other people don't understand? How does your most burdensome symptom affect your daily life? What does a good day look like? What does a bad day look like? What is the most important thing you have had to give up because of POLG? What have you stopped doing even though you technically could still do it? What does independence mean to you? What ability are you most afraid of losing? What have you lost that you most want to regain? How has POLG changed the way you see yourself? What are you most afraid POLG will take away in the future? What would a successful treatment look like in your everyday life? What would a treatment need to accomplish for you to consider it “worth it”? If you could tell FDA, researchers, clinicians, and drug developers ONE thing about living with POLG, what would you want them to understand? Any other comments or thoughts? Would you like to sign up for our mailing list?Mito NewslettersFAOD NewslettersBoth Mito & FAOD Newsletters CAPTCHA Submit **Externally Led Patient-Focused Drug Development Meeting focused on POLG** **Date:** Tuesday, November 17, 2026 **Time**: Coming Soon **Location:** Coming Soon For updates and registration information, please contact . [Register Today!](https://mitoaction-org.zoom.us/webinar/register/WN_GX3iFfxESiqNMRzGcBQQ0A) #### Co-Host ![](https://www.mitoaction.org/wp-content/uploads/2026/05/POLG-Foundation-Logo.webp) #### Patient Advocacy Partners ![Foundation logo: three vertical rounded bars in varying green shades on the left and the organization's name in text on the right.](https://www.mitoaction.org/wp-content/uploads/2026/05/United-Mitochondrial-Disease-Foundation-UMDF-Logo-1024x372.webp) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Logo-IMP-Color.png) #### Program Sponsors ![](https://www.mitoaction.org/wp-content/uploads/2026/05/Pretzel-Therapeutics-Logo-1024x211.webp) ![](https://www.mitoaction.org/wp-content/uploads/2026/09/20Mighty20Therapeutics20-20Horizontal20color20logo_white20BG-1-1024x398.jpg) ## Frequently Asked Questions What is an Externally Led Patient-Focused Drug Development (PFDD) meeting?Externally-led Patient-Focused Drug Development meetings give the FDA and other key stakeholders—including medical product developers, health care providers, and federal partners—an important opportunity to hear directly from patients, their families, caregivers, and patient advocates about the symptoms that matter most to them, the impact the disease has on patients’ daily lives, and patients’ experiences with currently available treatments. This input can inform the FDA’s decisions and oversight both during drug development and during review of a marketing application. Why should I participate in a PFDD meeting?This PFDD meeting is a critical opportunity to elevate the voice of those impacted by POLG, helping the FDA and other key stakeholders understand the real-life burden of this complex and progressive mitochondrial disorder. Insights shared during the meeting will help guide future research, therapy development, and regulatory decisions. MitoAction will be working alongside advocacy partners, including UMDF, IMP, and The POLG Foundation, among others to bring this meeting forward. What is the outcome from PFDD meetings? Following the PFDD meeting, MitoAction will summarize the input shared by patients and patient representatives in a Voice of the Patient report, which will be shared with the FDA and other key stakeholders. Clinicians, researchers, and industry partners will continue to refer to the summary report as they work on new therapies and treatments. Links to meeting materials, including transcripts, webcast recordings, presentation slides, and Voice of the Patient reports can be found on the Condition-Specific Meeting Reports webpage. What are POLG-Related Disorders?POLG-related disorders are a group of rare genetic conditions that affect the mitochondria. Mitochondria are the parts of a cell that help turn the energy we get from food into energy that the body can use. They are also important in the communication between body parts and creating other materials the body needs. Mitochondrial conditions can cause a variety of signs and symptoms in many parts of the body, particularly those that use a lot of energy like muscles and the brain. The gene *POLG* provides instructions to make part of an important protein called polymerase gamma (pol gamma). Pol gamma is the only protein of its kind that can copy and repair the set of DNA found in mitochondria (mtDNA). POLG-related disorders are a group of conditions whose signs and symptoms can overlap and vary widely. These conditions were discovered and named before scientists knew they were caused by different changes in the same gene. POLG-related disorders are sometimes discussed together as a group, and are sometimes discussed as individual disorders. Imagine POLG Mutations/Related disorders as a large umbrella, and underneath that umbrella there are specific types of POLG-related conditions. These types include: Alpers-Huttenlocher syndrome (Alpers syndrome, or AHS), ataxia neuropathy spectrum (ANS), childhood myocerebrohepatopathy spectrum (MCHS), mitochondrial neurogastrointestinal encephalopathy disease (MNGIE), myoclonic epilepsy myopathy sensory ataxia (MEMSA), progressive external ophthalmoplegia (PEO), and Leigh syndrome. [Learn more about POLG-Related Disorders](https://www.mitoaction.org/conditions/polg-related-disorders/ "Lear More About POLG") ## Resources [About POLG](https://www.mitoaction.org/conditions/polg-related-disorders/) --- ### [Energy Walk – Tallahassee, FL](https://www.mitoaction.org/events/energywalk/energy-walk-tallahassee-fl/) **Published:** May 27, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Energy Walks](https://www.mitoaction.org/events/energywalk/ "Energy Walk") # MitoAction Energy Walk — Tallahassee, FL Join us to raise awareness and funds for mito—one step at a time! ![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-30-1024x683.webp) ## **Saturday, September 19, 2026** **Alfred B. Mclay Gardens State Park** 3540 Thomasville Rd Tallahassee, FL 32309 Gather your team and get ready to go for a walk while raising awareness for mitochondrial disease! Whether you walk as an individual, create a team or volunteer, you’re making a difference in the lives of patients and families who rely on us. Your fundraising helps MitoAction change the future of health for every mito patient, here and around the world. Whether you walk as an individual, create a team, or volunteer, you’re making a difference in the lives of patients and families who rely upon us. This family event offers support, friendship, and fun for everyone! [Register Now](https://p2p.onecause.com/tallahasseeenergywalk) **Schedule of Events** Schedule of Events Coming Soon! ## Oliver’s Story ![](https://www.mitoaction.org/wp-content/uploads/2026/06/Oliver-Paul-Beckett-Reynolds--Olivers-Story--MitoAction-Energy-Walk-Talahasee-FL-759x1024.webp)On February 26, 2025 in a galaxy not so far away was born a little boy who was destined to change the world. Oliver Paul Beckett Reynolds, our Obi-Wan (OB-1), made his appearance in this world, immediately changing the lives of those around him. Little did we know that merely hours after his perfect arrival, Oliver would be taken by star fighter (helicopter) to the NICU at Shand‘s children hospital in Gainesville, Florida. With the strength of the force in him, he fought for an incredible nine days, as Master Jedis (the medical staff) raced to find the answers. Unfortunately, our young padawan was diagnosed with a rare mitochondrial genetic disorder, Combined oxidative phosphorylation disorder, that not even the force itself could withstand. OB-1 fulfilled his Jedi mission here on planet Earth, a mission so full of love, joy and light. Yet, he and his story live on in the Force, changing and guiding us all for the better with every new day! A gentle Jedi reminder from Oliver: “There is no ignorance; there is knowledge. There is no passion; there is serenity. There is no death; there is the Force” Thank you for joining us as we raise awareness for mitochondrial disorders, fundraise for further research, and honor our bright young patawan Oliver Paul Beckett Reynolds. ## Thank You Sponsors and Donors! #### Emerald Sponsor #### Platinum Sponsor #### Gold Sponsor ![](https://www.mitoaction.org/wp-content/uploads/2026/08/ArborLanding.png) #### Silver Sponsor ![](https://www.mitoaction.org/wp-content/uploads/2026/08/pdi_architecture_logo.jpeg) ![](https://www.mitoaction.org/wp-content/uploads/2026/09/Image-9-3-26-at-229-PM-1024x449.jpeg) **Bronze Sponsor** ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Image-8-12-26-at-1019-AM.jpeg) #### In-Kind Donations --- ### [Camp Opportunities](https://www.mitoaction.org/programs-support/mitoaction-programs/mhcf/camp-opportunities/) **Published:** July 19, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") MitoAction has created special partnerships with three camps as part of our mission to make summer camp a possibility for every child who suffers from mitochondrial disease. This mission is made possible by the generous donors of the [Matthew Harty Camper Fund](https://www.mitoaction.org/programs-support/mhcf/). Each of these camps are part of the nationally accredited SeriousFun camp network, and offers a safe, medically supervised program that allows mito kids to be free and safe, meet new friends, have fun, forget about their tubes and meds and just be a kid! ![MitoAction Camp Map](https://www.mitoaction.org/wp-content/uploads/2019/07/Camp-Map-Final.jpg) Through our partnerships, these camps are well-equipped to shape a program for our mito kids by understanding the unique challenges of mitochondrial disease. MitoAction has sent over 365 kids to camp and we look forward to continuing to make the dreams of mito kids come true. For more information on current camp opportunities, email . ![](https://www.mitoaction.org/wp-content/uploads/2026/09/2026_October_Camp_Flyer-791x1024.png) --- ### [MitoAction Memories](https://www.mitoaction.org/programs-support/patient-and-family-support/memories/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Patient & Family Support](https://www.mitoaction.org/programs-support/patient-and-family-support/ "Education") # MitoAction Memories Whether your loss was recent or years ago, we offer support to parents, family members and loved ones who are navigating the grief process. ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-MitoAction-Memories-Memorial-candle-1024x683.webp) The MitoAction Memories group was created to offer support for those who have lost a loved one to mitochondrial disease. Whether your loss was recent or years ago, we hope to be a support to parents, family members and loved ones who are navigating the grief process. You can connect with MitoAction and others on our closed [MitoAction Memories Facebook page](https://www.facebook.com/groups/880782125350143/). You can also email us at , whenever you need us to wrap our arms around you or your family. Join us on our [MitoAction Memories Facebook Page](https://www.facebook.com/groups/880782125350143/) as we go live on the third Thursday of each month. You can participate in the support conversation or just listen in. MitoAction wants to help you remember those you have lost to mitochondrial disease and ask that friends and family “Light a Light” in their memory. Please send your photos and memory wishes to us at [sydney@](mailto:%20memories@mitoaction.org)[mitoaction.org](mailto:sydney@mitoaction.org "mitoaction.org"). > For our loved ones we miss so dearly, we light a light and remember you. Submitters Name(Required) First Last Email(Required) In memory of(Required) First Last Date of Birth(Required) Date of Passing(Required) Relation to loved one(Required)ParentSiblingSpouseGrandparentAunt/UncleCousinFriendOther Share about your loved one. Upload photo (png, gif or jpg) Drop files here or Select files Accepted file types: jpg, gif, png, Max. file size: 50 MB. Submit ## Light a Light for Mito [### Abigail “Abby” Renee Kasuba April 16, 2000 – March 10, 2009 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Abby.jpg) [### Adrian Corona April 17, 2017 – July 18, 2017 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Adrian-angel.jpg) [### Aidan Antonio Calatayud November 29, 2004 – August 16, 2022 ](https://www.mitoaction.org/wp-content/uploads/2023/09/aidencalatayud-e1695224669197.jpeg) [### Aiden Yong-Yeon Lee April 3, 2006 – November 6, 2014 ](https://www.mitoaction.org/wp-content/uploads/2019/09/FB_IMG_1439910992715.jpg) [### AJ ](https://www.mitoaction.org/wp-content/uploads/2019/09/AJ_0.jpg) [### Alex Schumacher April 7, 2003 – October 4, 2014 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Alex-Light.jpg) [### Alicia J. Hobley April 8, 2008 – June 3, 2010 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Alicia.jpg) [### Allen C. Edwards April 29, 2014 – March 23, 2017 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Allen.jpg) [### Allen Cannon Edwards April 29, 2014 – March 23, 2017 ](https://www.mitoaction.org/wp-content/uploads/2019/09/20160628_201341-1.jpg) [### Allie Remarski December 26, 1988 – October 5, 2013 ](https://www.mitoaction.org/wp-content/uploads/2019/09/allie-collage.jpg) [### Alyson “Aly” Schwenk February 8, 1981 – April 13, 2015 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Aly-collage.jpg) [### Alyssa Brooke Douglas May 21, 1996 – August 5, 2014 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Alyssa_0.jpg) [### Amy Jeannie May 23, 2014 – March 13, 2016 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Amy-Jeannie.jpg) [### Andrew Whalen October 5, 1976 – June 22, 2003 ](https://www.mitoaction.org/wp-content/uploads/2019/09/newandrew.jpg) [### Anneliese ](https://www.mitoaction.org/wp-content/uploads/2019/09/Sisters.jpg) [### Archer Banjo Cleary September 6, 2012 – April 26, 2013 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Archer.jpg) [### Ariana Elizabeth Beaumier April 24, 2013 – November 18, 2013 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Ariana.jpg) [### Arihanna K. Woodall June 21, 2011 – December 8, 2013 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Green-Candle.png) [### Ashley Lauren Hoppes February 13, 1992 – March 22, 2012 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Ashley-collage.jpg) [### Aspyn Block November 14, 2001 – July 15, 2002 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Green-Candle.png) [### Audrey Elizabeth Lawrence August 10, 2001 – May 12, 2008 ](https://www.mitoaction.org/wp-content/uploads/2019/09/audrey.jpg) [### Autumn Ruth Kenney June 11, 2008 – May 31, 2015 ](https://www.mitoaction.org/wp-content/uploads/2019/09/autumn-kenney.jpg) [### Ava Merrill July 8, 2014 – March 17, 2015 ](https://www.mitoaction.org/wp-content/uploads/2019/09/ava.jpg) [### Bella Stanley December 31, 2008 – September 20, 2019 ](https://www.mitoaction.org/wp-content/uploads/2020/09/image0-3.jpeg) [### Bethany Lewallen November 25, 1995 – October 12, 2015 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Bethany.jpg) [### Bob Boyle ](https://www.mitoaction.org/wp-content/uploads/2019/09/MitoMemory.jpg) [### Bonnie Codier ](https://www.mitoaction.org/wp-content/uploads/2019/09/Bonnie-Codier.jpg) [### Brady Hackbarth April 29, 2005 – September 1, 2011 ](https://www.mitoaction.org/wp-content/uploads/2019/09/brady.jpg) [### Brady Waddick ](https://www.mitoaction.org/wp-content/uploads/2019/09/BradyW.jpg) [### Brandon Harris January 31, 2003 – June 8, 2012 ](https://www.mitoaction.org/wp-content/uploads/2019/09/brandon.jpg) [### Brayden Burge September 29, 2004 – October 11, 2013 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Brayden-Burge.jpg) [### Brenan Alijah Petty November 6, 2013 – October 8, 2014 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Petty-collage.jpg) [### Bridget Lucille Nuccitelli July 18, 2007 – September 15, 2007 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Bridget.jpg) [### Brielle Lana Harmon November 22, 2011 – October 19, 2014 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Brielle.jpg) [### Briony ](https://www.mitoaction.org/wp-content/uploads/2019/09/Sisters.jpg) [### Brody Tucker April 25, 2007 – March 7, 2009 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Brody.jpg) [### Bryce Alexander Caldwell April 17, 2006 – December 30, 2008 ](https://www.mitoaction.org/wp-content/uploads/2019/09/christopher-bryce.jpg) [### Caleb Jason Jacobs April 29, 2010 – September 9, 2012 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Caleb-Jacobs.jpg) [### Carl Mason October 27, 1992 – January 23, 2013 ](https://www.mitoaction.org/wp-content/uploads/2019/09/CarlMason.jpg) [### Caroline Pereira Duraes May 16, 2001 – September 4, 2011 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Caroline.jpg) [### Carter Buffum – May 19, 2016 ](https://www.mitoaction.org/wp-content/uploads/2019/09/18579081_10209782114206654_294721533_n.jpg) [### Carys Karpp April 23, 2004 – April 13, 2013 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Carys-Karpp.jpg) [### Chance Nathaniel Spurlock February 23, 2007 – November 28, 2007 ](https://www.mitoaction.org/wp-content/uploads/2019/09/chance.jpg) [### Chase Ryan Donnelly January 1, 2009 – July 6, 2010 ](https://www.mitoaction.org/wp-content/uploads/2019/09/chase.jpg) [### Christopher Joseph Caldwell November 6, 2001 – December 20, 2007 ](https://www.mitoaction.org/wp-content/uploads/2019/09/christopher-bryce.jpg) [### Claire Giles Crittenden March 25, 2003 – April 25, 2008 ](https://www.mitoaction.org/wp-content/uploads/2019/09/claire.jpg) [### Colten Lee Abell August 7, 2015 – December 28, 2016 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Colt.jpg) [### Connor Scott Millard March 1, 1999 – September 18, 2007 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Connor-1.jpg) [### Connor Troy June 30, 2000 – April 16, 2013 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Connor.jpg) [### Cooper Jackson Casavan July 16, 2007 – October 12, 2013 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Coop-the-due.jpg) [### Cooper Roy Watson June 4, 2010 – May 29, 2011 ](https://www.mitoaction.org/wp-content/uploads/2019/09/photo-5.jpg) [### Corynna Strawser April 28, 1997 – December 11, 2013 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Corynna.jpg) [### Daithì Hasson O’Doherty November 5, 2014 – March 5, 2016 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Daithi.jpg) [### Danica Wilson March 25, 2010 – December 17, 2015 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Danica.jpg) [### Danielle Laurine Jollimore June 16, 2011 – July 27, 2019 ](https://www.mitoaction.org/wp-content/uploads/2019/11/Danielle-1.jpg) [### David Bowen ](https://www.mitoaction.org/wp-content/uploads/2019/09/Green-Candle.png) [### Declan Arthur Gardner August 30, 2011 – September 2, 2011 ](https://www.mitoaction.org/wp-content/uploads/2019/09/declan3.jpg) [### Desmond Gray ](https://www.mitoaction.org/wp-content/uploads/2019/09/Desmond.jpg) [### Diego ](https://www.mitoaction.org/wp-content/uploads/2019/09/Diego_0-1.jpg) [### Diego F. Lumauig September 14, 2006 – August 14, 2014 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Diego-L-photo.jpg) [### Dominic Angelo Nuccitelli April 16, 2001 – September 14, 2001 ](https://www.mitoaction.org/wp-content/uploads/2019/09/dominic.jpg) [### Elias Wezowicz February 1, 2006 – November 22, 2015 ](https://www.mitoaction.org/wp-content/uploads/2024/09/image0.jpeg) [### Ellie Brooke Wilkinson March 5, 2007 – January 25, 2011 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Ellie.jpg) [### Emily Kathryn Rivers February 18, 1992 – May 10, 2014 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Emily.jpg) [### Emma Frances Dalton September 22, 2010 – April 17, 2011 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Emma.jpg) [### Enis Almonte ](https://www.mitoaction.org/wp-content/uploads/2021/09/IMG_1826-scaled.jpeg) [### Eric Jason Cooper December 28, 1979 – January 7, 1996 ](https://www.mitoaction.org/wp-content/uploads/2021/09/image0.jpg) [### Eric Thomas Clement November 28, 2006 – November 26, 2012 ](https://www.mitoaction.org/wp-content/uploads/2019/09/eric.jpg) [### Erin Elyse Flynn September 29, 1984 – February 7, 2014 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Erin.jpg) [### Erin Flynn September 29, 1984 – February 7, 2014 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Erin-Flynn.jpg) [### Ezra Noah MacElroy March 10, 2020 – April 20, 2021 ](https://www.mitoaction.org/wp-content/uploads/2021/09/image_6487327.jpg) [### Frankie Gordie Kirkby ](https://www.mitoaction.org/wp-content/uploads/2019/09/frankie-026.jpg) [### Gabriel Ruebelmann April 25, 2005 – April 15, 2015 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Gabriel.jpg) [### George Charles Garman September 9, 2009 – January 29, 2010 ](https://www.mitoaction.org/wp-content/uploads/2019/09/george-1.jpg) [### Gerald Sacunas May 1, 1956 – May 14, 2017 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Gerald-Sacunas-5_1_56-5_14_17.jpg) [### Glenn Hodges Floyd October 8, 1942 – August 10, 1999 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Glenn.jpg) [### Grace Caskey March 6, 2005 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Grace2.jpg) [### Hans-Joachim Kirsch ](https://www.mitoaction.org/wp-content/uploads/2019/09/HJKcollage.jpg) [### Harley “Honey Bear” Kayleen Carson January 15, 2018 – August 24, 2009 ](https://www.mitoaction.org/wp-content/uploads/2021/09/FB_IMG_1629811753625.jpg) [### Hayden Anthony Hamilton March 5, 2008 – June 13, 2011 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Hayden.jpg) [### Heather Grace Coleman September 25, 2002 – September 16, 2005 ](https://www.mitoaction.org/wp-content/uploads/2019/09/heather_coleman_picture.jpg) [### Heather Grace Coleman September 25, 2002 – September 16, 2005 ](https://www.mitoaction.org/wp-content/uploads/2019/09/heather.jpg) [### Isaac Farooq Malik September 27, 2008 – January 24, 2010 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Issac.jpg) [### Isaac Farooq Malik September 27, 2008 – January 24, 2010 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Isaac.jpg) [### Isabel Eryn January 21, 2001 – March 29, 2001 ](https://www.mitoaction.org/wp-content/uploads/2019/09/soph-isa.jpg) [### Isabella Carreiro August 23, 2002 – July 28, 2010 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Isabella.jpg) [### Isla Elizabeth Watson May 15, 2013 – April 8, 2014 ](https://www.mitoaction.org/wp-content/uploads/2019/09/photo-5.jpg) [### Jack Jensen January 17, 2006 – February 3, 2007 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Jack.jpg) [### Jack Thomas Edwards July 8, 2008 – September 7, 2012 ](https://www.mitoaction.org/wp-content/uploads/2019/09/jackThomas.jpg) [### Jack Thomas Edwards July 8, 2008 – September 7, 2012 ](https://www.mitoaction.org/wp-content/uploads/2019/09/jackT.jpg) [### Jackson Thomas Feliciano October 5, 2007 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Jackson.jpg) [### Jacob Hallberg ](https://www.mitoaction.org/wp-content/uploads/2019/09/jacob_1.jpg) [### Jacob Nicholas Wright December 6, 2010 – April 20, 2012 ](https://www.mitoaction.org/wp-content/uploads/2019/09/jacob-1.jpg) [### Jacob Wright December 6, 2010 – April 20, 2012 ](https://www.mitoaction.org/wp-content/uploads/2019/09/jacob.jpg) [### James “Bubba” Charles Ament December 13, 1995 – August 21, 2010 ](https://www.mitoaction.org/wp-content/uploads/2019/09/bubba.jpg) [### Jane Windish April 24, 2003 – April 11, 2011 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Jane-museum.jpg) [### Jason Brindle January 26, 1971 – April 7, 2011 ](https://www.mitoaction.org/wp-content/uploads/2019/09/jason-brindle.jpg) [### Jaycob Alexander Harris May 9, 2008 – February 15, 2013 ](https://www.mitoaction.org/wp-content/uploads/2019/09/breylon.jpg) [### Jaycob Alexander Harris January 31, 2012 – June 30, 2013 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Jaycob.jpg) [### Jayden Rieffel December 23, 2010 – September 23, 2012 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Jayden.jpg) [### Jennifer Lee Patrick July 21, 1986 – November 16, 1986 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Jennifer.jpg) [### Jimmy “The Big Guy” McKay November 2, 2006 – December 27, 2007 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Jimmy-Big-Guy.jpg) [### Johnathan Gabriel Cunard June 16, 2011 – July 27, 2019 ](https://www.mitoaction.org/wp-content/uploads/2019/11/FB_IMG_1565413185862.jpg) [### Jonah Vernon Ritterbush February 3, 2013 – April 11, 2013 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Jonah.jpg) [### Jonathan Ruby ](https://www.mitoaction.org/wp-content/uploads/2019/09/Jonathan.jpg) [### Joshua Klingler February 26, 2013 – December 2, 2014 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Klingler.jpg) [### Julian R. Fonville October 30, 2009 – February 7, 2012 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Julian.jpg) [### Juliet Christina September 1, 2014 – September 5, 2020 ](https://www.mitoaction.org/wp-content/uploads/2021/10/image0.jpeg) [### Kaidon Andrew Stamper October 24, 2003 – April 24, 2013 ](https://www.mitoaction.org/wp-content/uploads/2019/09/kaidon.jpg) [### Kain Gregory Buell August 9, 2004 – September 2, 2014 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Kain-collage.jpg) [### Kaitlynn Chisenall ](https://www.mitoaction.org/wp-content/uploads/2019/09/Kaitlyn.jpg) [### Karina Milenova Kireva March 30, 2013 – November 14, 2013 ](https://www.mitoaction.org/wp-content/uploads/2019/09/karina.jpg) [### Katelyn Shumaker May 24, 1999 – October 10, 2007 ](https://www.mitoaction.org/wp-content/uploads/2019/09/katelyn.jpg) [### Katelynn Joselle Misola May 29, 2011 – February 24, 2015 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Katelynn.jpg) [### Katherine “Kate” McAleer-Johnson May 15, 1987 – December 10, 2020 ](https://www.mitoaction.org/wp-content/uploads/2021/09/unnamed.jpg) [### Kathryn “Katie” Nicole Cole December 28, 1994 – June 15, 2017 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Kathryn.jpg) [### Kayla Marie Dawn O’Flynn July 22, 1990 – July 14, 2005 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Kayla.jpg) [### Kayla Marie Dawn O’Flynn July 22, 1990 – July 14, 2005 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Green-Candle.png) [### Keegan Lajlim Yang July 2, 2016 – January 7, 2017 ](https://www.mitoaction.org/wp-content/uploads/2021/10/image0.jpeg) [### Kelci Shigeta December 7, 2008 – August 31, 2013 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Kelci.jpg) [### Kellan Reynolds January 28, 2011 – July 2, 2020 ](https://www.mitoaction.org/wp-content/uploads/2020/09/image0-2.jpeg) [### Kennedy Lynn Burgess September 12, 2001 – May 6, 2016 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Kennedy.jpg) [### Khristen Abshire – March 9, 2013 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Khristen.jpg) [### Kirkland Kilbride March 6, 2001 – December 2, 2007 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Kirkland_Kilbride.gif) [### Kody Weatherford November 2, 1992 – January 27, 2020 ](https://www.mitoaction.org/wp-content/uploads/2020/09/20200317_192258-1.jpg) [### Kristen Charleston January 1, 1993 – August 29, 2011 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Kristen-2011.jpg) [### Krysta D’Nea White June 7, 1998 – January 16, 2014 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Krysta.jpg) [### Kyle Weatherford November 2, 1992 – April 3, 1999 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Kyle-tree.jpg) [### Laney Daniel November 29, 1985 – March 25, 2016 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Laney-Daniel.jpg) [### Lauren Benney October 1, 2001 – March 20, 2012 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Lauren-1.jpg) [### Lauren Francis March 23, 2006 – June 16, 2014 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Lauren.jpg) [### Leah Patience Beaumier March 10, 2015 – March 15, 2015 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Leah.jpg) [### Leah Raquel Lucia February 17, 2011 – June 6, 2013 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Leah-1.jpg) [### Leanna Haddad May 5, 1997 – March 20, 2005 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Leanna-2.jpg) [### Leela Row July 25, 2013 – August 7, 2014 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Leela.jpg) [### Leo Donald Fortunato April 5, 2007 – April 22, 2008 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Leo.jpg) [### Leslie Cora Whitt-Williams June 17, 1988 – October 21, 2012 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Leslie.jpg) [### Leslie Whitt-Williams June 17, 1988 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Leslie_0.jpg) [### Levi Jacob Kendall September 30, 2012 – August 21, 2013 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Levi.jpg) [### Lucas Dunton February 16, 2010 – April 5, 2021 ](https://www.mitoaction.org/wp-content/uploads/2021/09/BF3BC269-55E5-412F-98B5-EC0094600A70-1-scaled.jpg) [### Mack Michael Harrington July 25, 2007 – September 22, 2009 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Mack-Harrington.jpg) [### Madelaine Martin June 1, 1997 – December 27, 2017 ](https://www.mitoaction.org/wp-content/uploads/2020/09/image0-1.jpeg) [### Madeline “Kate” Stephens April 17, 2001 – July 13, 2008 ](https://www.mitoaction.org/wp-content/uploads/2019/09/madeline.jpg) [### Madison Grantham July 29, 2004 – August 3, 2006 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Madison.jpg) [### Maggie Agnew June 18, 2008 – February 26, 2011 ](https://www.mitoaction.org/wp-content/uploads/2019/09/NEWmaggie.jpg) [### Maiya Blackmon October 15, 2015 – April 2, 2016 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Maiya.jpg) [### Mamie Rose ](https://www.mitoaction.org/wp-content/uploads/2019/09/mamie.jpg) [### Mannix Mags Agnew February 10, 2013 – June 12, 2014 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Mannix.jpg) [### Marti Hall ](https://www.mitoaction.org/wp-content/uploads/2019/09/Danny-and-Marti.jpg) [### Marvin March 30, 1999 – September 5, 2005 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Marvin-014.jpg) [### Matthew Lee Dugas April 6, 2005 – April 20, 2015 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Matthew-Dugas.jpg) [### Maud Mary Adams Fullerton January 22, 2016 – September 24, 2005 ](https://www.mitoaction.org/wp-content/uploads/2019/09/maud.jpg) [### Melani Rebekah Mehana Fu March 7, 2008 – January 29, 2012 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Melani_0.jpg) [### Michael C. Vassallo March 9, 1973 – March 24, 2015 ](https://www.mitoaction.org/wp-content/uploads/2019/09/big-hug.jpg) [### Michaela Rae July 8, 1993 – November 4, 2003 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Michaela.jpg) [### Morgan Danielle Gilbreath August 5, 2002 – November 8, 2014 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Morgan-collage.jpg) [### Nathan Mowrer ](https://www.mitoaction.org/wp-content/uploads/2019/09/Nathan.jpg) [### Noah ](https://www.mitoaction.org/wp-content/uploads/2019/09/Noah-Light.jpg) [### Noah C.K. Kaawaloa December 16, 2004 – June 11, 2007 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Noah.jpg) [### Oliver Henry Fleming July 10, 2009 – January 12, 2014 ](https://www.mitoaction.org/wp-content/uploads/2019/09/oliver-fleming-collage.jpg) [### Olivia McCormick August 24, 2010 – October 31, 2013 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Olivia.jpg) [### Owen Stump August 12, 2006 – May 26, 2010 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Owen.jpg) [### Patricia Mary Smith (nee Hunter) July 25, 1929 – December 14, 1980 ](https://www.mitoaction.org/wp-content/uploads/2019/09/patricia.jpg) [### Rachel Anne Flynn January 25, 2001 – March 18, 2009 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Rachel-Anne.jpg) [### Raelynn Musacco September 16, 2006 – October 15, 2008 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Raelynn.jpg) [### Randi Evans ](https://www.mitoaction.org/wp-content/uploads/2019/09/Randi.jpg) [### Rebekka Maelynn Sallee February 13, 2004 – September 18, 2016 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Rebekka-Maelynn-Sallee-2_13_04-9_18_2016.jpg) [### ReeNa Holleran June 8, 1989 – March 30, 2009 ](https://www.mitoaction.org/wp-content/uploads/2019/09/ReeNa.jpg) [### Rina Goldberg ](https://www.mitoaction.org/wp-content/uploads/2019/09/rina-shirt.jpg) [### Robert Donal Devine ](https://www.mitoaction.org/wp-content/uploads/2019/09/Robert-angel.jpg) [### Robert Graham Collins November 17, 2015 – January 24, 2017 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Green-Candle.png) [### Ruth Crane September 19, 1933 – January 2, 2012 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Ruth1.jpg) [### Ryan Mason Donnelly September 10, 2006 – May 1, 2008 ](https://www.mitoaction.org/wp-content/uploads/2019/09/ryan.jpg) [### Sabrina “Precious Angel” August 29, 2000 – August 1, 2008 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Precious-angel-Sabrina-8_29_00-8_1_08.jpg) [### Sailor Isabel Assis July 23, 2015 – June 10, 2016 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Sailor.jpg) [### Samantha Schichtel July 18, 2006 – July 25, 2010 ](https://www.mitoaction.org/wp-content/uploads/2019/09/samantha.jpg) [### Samuel Cutliff September 10, 2012 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Samuel.jpg) [### Samuel Cutliff ](https://www.mitoaction.org/wp-content/uploads/2019/09/ForSamuel.jpg) [### Samya Haddad March 17, 1994 – December 10, 2002 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Samya.jpg) [### Sandra K. Russell May 5, 1956 – August 6, 2008 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Sandra-and-Anna-09-2005-2.jpg) [### Sara Montgomery ](https://www.mitoaction.org/wp-content/uploads/2019/09/Montgomery.jpg) [### Scott ](https://www.mitoaction.org/wp-content/uploads/2019/09/Mito-angel-scott.jpg) [### Scott August 27, 1973 – September 19, 1985 ](https://www.mitoaction.org/wp-content/uploads/2019/09/scott.jpg) [### Scott Vernon August 27, 1973 – September 19, 1985 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Vernon-collage.jpg) [### Sharon Perkins December 5, 1967 – August 13, 2013 ](https://www.mitoaction.org/wp-content/uploads/2019/09/sharon.jpg) [### Shayla Cecilia Strobhar July 29, 2002 – May 17, 2014 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Shayla.jpg) [### Sophia Beatriz October 17, 1998 – December 11, 1998 ](https://www.mitoaction.org/wp-content/uploads/2019/09/soph-isa.jpg) [### Sterling Curran Smith June 4, 2012 – April 8, 2013 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Sterling1.jpg) [### Susan Douglass August 25, 1958 – August 28, 2020 ](https://www.mitoaction.org/wp-content/uploads/2021/09/IMG_7829.jpeg) [### Taylor Renee Lawhead February 11, 2011 – June 2, 2013 ](https://www.mitoaction.org/wp-content/uploads/2019/09/taylor.jpg) [### Una Pozon February 19, 2008 – May 21, 2015 ](https://www.mitoaction.org/wp-content/uploads/2019/09/una.png) [### Wardell Williams-Gray February 15, 1991 – December 31, 2001 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Wardell-Williams-Gray.jpg) [### William Chandler Brown ](https://www.mitoaction.org/wp-content/uploads/2019/09/William.jpg) [### William Reed Jr. ](https://www.mitoaction.org/wp-content/uploads/2019/09/Bill-sward.jpg) [### William Tuthill Dickerson May 8, 1991 – April 12, 1994 ](https://www.mitoaction.org/wp-content/uploads/2019/09/WilliamT.jpg) [### Wyatt Daniel DeStephano July 23, 2002 – September 27, 2013 ](https://www.mitoaction.org/wp-content/uploads/2019/09/Daniel.jpg) --- ### [Externally Led Patient-Focused Drug Development Meeting on PCQD](https://www.mitoaction.org/join-the-cause/patient-focused-drug-development-meetings/externally-led-patient-focused-drug-development-meeting-on-pcqd/) **Published:** April 8, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to PFDD Meetings](https://www.mitoaction.org/join-the-cause/patient-focused-drug-development-meetings/ "Back to Section") # Externally Led Patient-Focused Drug Development Meeting on PCQD MitoAction is honored to host a Patient-Focused Drug Development (PFDD) meeting focused on PCQD. ![Externally Led Patient-Focused Drug Development Meeting on PCQD](https://www.mitoaction.org/wp-content/uploads/2026/04/Externally-Led-Patient-Focused-Drug-Development-Meeting-on-PCQD--MitoAction-1024x683.webp) MitoAction is honored to host an Externally Led [Patient-Focused Drug Development (PFDD) meeting](https://www.fda.gov/industry/prescription-drug-user-fee-amendments/upcoming-el-pfdd-meetings) focused on [Primary CoQ10 Deficiency (](https://www.mitoaction.org/conditions/primary-coq10-deficiency/)[PCQD](https://www.mitoaction.org/conditions/primary-coq10-deficiency/)). This meeting is open to all members of the mitochondrial disease community, including patients, caregivers, clinicians, researchers, and industry partners. > “PCQD deeply impacts every aspect of life for patients and families. This PFDD meeting is a crucial platform for our community to educate regulators, researchers, and developers about the urgent needs and challenges of living with this devastating condition. > > Kira Mann, CEO of MitoAction Participants will be invited to share their experiences through live testimony, polling, and written comments. MitoAction encourages all individuals and families affected by Primary CoQ10 Deficiency—and those who support them—to attend and be part of shaping the future of mitochondrial disease care and treatment. ## Share Your Story & Comments "\*" indicates required fields EmailThis field is for validation purposes and should be left unchanged. Name\* First Last Email\* Phone What is your connection to mito?\* Patient Parent Spouse Caregiver Son Daughter Sibling Grandparent Grandchild Aunt Uncle Cousin Niece Nephew Friend Teacher/Educator Medical Professional Physician Nurse Genetic Counselor Social Worker Researcher Industry Rep Other Diagnosis typeGenetically ConfirmedClinical DiagnosisUndiagnosed What challenges have you faced with diagnosis? What day to day struggles do you experience as a result of the disease? What is your current treatment protocol for the disease? What issues have you faced with regard to treatment? In your own words, what is it like to live with PCQD? What is the hardest part of living with PCQD that other people don't understand? How does your most burdensome symptom affect your daily life? What does a good day look like? What does a bad day look like? What is the most important thing you have had to give up because of PCQD? What have you stopped doing even though you technically could still do it? What does independence mean to you? What ability are you most afraid of losing? What have you lost that you most want to regain? How has PCQD changed the way you see yourself? What are you most afraid PCQD will take away in the future? What would a successful treatment look like in your everyday life? What would a treatment need to accomplish for you to consider it “worth it”? If you could tell FDA, researchers, clinicians, and drug developers ONE thing about living with PCQD, what would you want them to understand? Any other comments or thoughts? Would you like to sign up for our mailing list?Mito NewslettersFAOD NewslettersBoth Mito & FAOD Newsletters CAPTCHA Submit **Externally Led Patient-Focused Drug Development Meeting focused on PCQD** **Date:** Tuesday, February 16, 2027 **Time**: Coming Soon **Location:** Coming Soon For updates and registration information, please contact . #### Patient Advocacy Partners ![Foundation logo: three vertical rounded bars in varying green shades on the left and the organization's name in text on the right.](https://www.mitoaction.org/wp-content/uploads/2026/05/United-Mitochondrial-Disease-Foundation-UMDF-Logo-1024x372.webp) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Logo-IMP-Color.png) ## Frequently Asked Questions What is an Externally Led Patient-Focused Drug Development (PFDD) meeting?Externally-led Patient-Focused Drug Development meetings give the FDA and other key stakeholders—including medical product developers, health care providers, and federal partners—an important opportunity to hear directly from patients, their families, caregivers, and patient advocates about the symptoms that matter most to them, the impact the disease has on patients’ daily lives, and patients’ experiences with currently available treatments. This input can inform the FDA’s decisions and oversight both during drug development and during review of a marketing application. Why should I participate in a PFDD meeting?This PFDD meeting is a critical opportunity to elevate the voice of those impacted by PCQD, helping the FDA and other key stakeholders understand the real-life burden of this complex and progressive mitochondrial disorder. Insights shared during the meeting will help guide future research, therapy development, and regulatory decisions. MitoAction will be working alongside advocacy partners, including UMDF and IMP, among others to bring this meeting forward. What is the outcome from PFDD meetings? Following the PFDD meeting, MitoAction will summarize the input shared by patients and patient representatives in a Voice of the Patient report, which will be shared with the FDA and other key stakeholders. Clinicians, researchers, and industry partners will continue to refer to the summary report as they work on new therapies and treatments. Links to meeting materials, including transcripts, webcast recordings, presentation slides, and Voice of the Patient reports can be found on the Condition-Specific Meeting Reports webpage. What is Primary CoQ10 Deficiency (PCQD)?Coenzyme Q10 is a lipid in the ETC that helps move electrons from complexes 1 and 2 to complex 3 in the ETC. It also receives electrons from other proteins in mitochondria supporting mitochondrial function. Primary CoQ10 deficiency happens when there is a genetic mutation that doesn’t allow the body to make enough CoQ10 that’s needed by the mitochondria to function normally. [Learn more about Primary CoQ10 Deficiency (PCQD).](https://www.mitoaction.org/conditions/primary-coq10-deficiency/) ## Resources [About Primary CoQ10 Deficiency (PCQD)](https://www.mitoaction.org/conditions/primary-coq10-deficiency/) --- ### [MitoSantas](https://www.mitoaction.org/programs-support/mitoaction-programs/mito-santas/) **Published:** March 12, 2019 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [MitoAction Programs](https://www.mitoaction.org/planning-and-preparation/ "Back to Section") # MitoSantas MitoAction Santas bring smiles to the faces of children affected by mitochondrial disease and help ease the stress of mito parents during the holiday season! [2026 MitoSantas Application](https://www.mitoaction.org/programs-support/mitoaction-programs/mito-santas/2026-mitosantas-application/) ![MitoSantas providing Christmas gifts to kids dealing with mitochondrial disease - MitoAction Programs and Support.](https://www.mitoaction.org/wp-content/uploads/2023/01/MitoSantas-provides-Christmas-gifts-to-kids-dealing-with-mitochondrial-disease-768x1024.jpg) Bringing smiles to the faces of children affected by mitochondrial disease and easing the stress of parents during the holiday season! MitoSantas was founded in western New York in 2009 by adults affected by mitochondrial disease and was limited to families of children only in that area. In 2017, MitoSantas partnered with MitoAction to go nationwide and deliver Christmas presents to children across the United States! Christmas can be a very stressful time for Mito families. Children are often sick and the budget is tight for many parents who have to juggle co-payments, Dr. visits and those extra costs for their kiddos. These kids deserve some extra happiness and their parents deserve some stress relief. That is where MitoSantas comes in! **Volunteers from MitoSantas purchase gifts for children 18 and under affected by mitochondrial disease and their siblings ages 16 and under. There is a spending limit of $50 per child.** Parents will fill out an application for each child with things they like and their Christmas wishes. Our volunteers then work personally with each family to shop for the gifts on their wishlist! Delivery is arranged on a case by case basis. [2026 MitoSantas Application](https://www.mitoaction.org/programs-support/mitoaction-programs/mito-santas/2026-mitosantas-application/) Donate ### Honoring the Heart of MitoSantas: Remembering Jennifer Schwartzoff MitoAction is deeply honored to continue the MitoSanta program, a cherished tradition founded and lovingly led by Jennifer Schwartzoff. Jennifer was more than the creative force behind MitoSanta; she was its heart. What began as a small effort to bring holiday joy to a few local families grew under her care into a beacon of hope and love for hundreds across the mitochondrial disease community. Through her kindness, compassion, and tireless spirit, Jennifer reminded us all of what it truly means to give. To the children she served, she was affectionately known as “Santa Jenny.” They eagerly awaited her gifts, cards, and messages each year, not just for the presents she sent, but for the love and joy that came with them. Jennifer made every child feel special, every family seen, and every holiday brighter. In November 2024, we lost Jennifer, our beloved Santa Jenny, far too soon. Her passing left a profound void in our hearts and across the MitoAction community. Yet even in loss, her legacy of kindness continues to shine. In an extraordinary act of love and dedication, Jennifer’s sister, Michelle, stepped in to ensure the 2024 MitoSanta Program carried on exactly as Jennifer envisioned. Thanks to Michelle’s compassion and commitment, hundreds of families will continue to experience the magic that Jennifer built, a true reflection of sisterhood, service, and the enduring power of love. Going forward, Michelle will continue to help lead MitoSanta, ensuring that Jennifer’s mission to bring joy, connection, and comfort to families affected by mitochondrial disease continues to grow for years to come. ![](https://www.mitoaction.org/wp-content/uploads/2025/10/Screenshot-2025-10-24-at-2.55.21-PM-1024x798.png)*“Jennifer poured her heart into MitoSanta, creating moments of joy that reached far beyond the holidays. Her love touched every family she served, and her legacy will live on through each child and parent who continues to feel that same magic. Thanks to her sister Michelle’s incredible dedication, MitoSanta will forever carry Jennifer’s spirit, a reflection of her compassion, generosity, and the light she brought to our community.”* — **Kira Mann, CEO, MitoAction** In her honor, we dedicate every MitoSanta season to Jennifer Schwartzoff, forever remembered by the families and children who loved her as Santa Jenny, the true spirit of giving. ![](https://www.mitoaction.org/wp-content/uploads/2019/03/Untitled-design-2-300x300.png) --- ### [Energy Walk - Rochester, NY](https://www.mitoaction.org/events/energywalk/energywalkrochester/) **Published:** October 1, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Energy Walks](https://www.mitoaction.org/events/energywalk/ "Energy Walk") # MitoAction Energy Walk & 5k — Rochester, NY Join us to raise awareness and funds for mito—one step at a time! ![](https://www.mitoaction.org/wp-content/uploads/2026/05/2025-Rochester-Energy-Walk-6--MitoAction-1024x1024.webp) ## RESCHEDULED for Sunday, September 27, 2026 **Basil Marella Park**, 975 English Rd, Rochester, NY 14626 Join our hosts as they work together to help spread awareness and raise funds to support the MitoAction community. Stacy’s dad, Todd and uncle Jesi both lost their battles with mitochondrial disease. Stacy’s neighbor is also affected by this devastating disease. They ask that you join in and help support families like theirs, who face the daily challenges of life with this rare disease. This family event offers support, friendship, and fun for everyone! The day’s highlights include: - Food & Refreshments - Unique raffle items - Kids’ arts & crafts - And so much more! Your participation makes a huge difference in the lives of patients and families who rely on us. Help to show our community how strong and powerful we can be together. [Register](https://p2p.onecause.com/rochesterenergywalk) ![](https://www.mitoaction.org/wp-content/uploads/2026/08/c2d00d85-1f8f-477c-83b0-1609fe72a67f-1-683x1024.png) ## 2025 Energy Walk Photos [![Group of people posing in front of a banner on a tennis court, behind a chain-link fence.](https://www.mitoaction.org/wp-content/uploads/2026/05/2025-Rochester-Energy-Walk-2--MitoAction-1024x1024.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2025-Rochester-Energy-Walk-2--MitoAction-scaled.webp)[![Group of people walking along a park path beside a chain-link fence tennis court, with trees overhead and a smiling woman in the foreground right.](https://www.mitoaction.org/wp-content/uploads/2026/05/2025-Rochester-Energy-Walk-1--MitoAction-1024x853.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2025-Rochester-Energy-Walk-1--MitoAction-scaled.webp)[![Group of people walking along a park path beside a chain-link fence tennis court; man in green shirt at front gives thumbs up.](https://www.mitoaction.org/wp-content/uploads/2026/05/2025-Rochester-Energy-Walk-3--MitoAction-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2025-Rochester-Energy-Walk-3--MitoAction-scaled.webp)[![Group of young men running in a line during a drill on a grassy field with orange cones and a goal net in the background.](https://www.mitoaction.org/wp-content/uploads/2026/05/2025-Rochester-Energy-Walk-4--MitoAction-1024x1024.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2025-Rochester-Energy-Walk-4--MitoAction-scaled.webp)[![Group of four adults walking side by side on a paved path beside a tall black fence, smiling at the camera.](https://www.mitoaction.org/wp-content/uploads/2026/05/2025-Rochester-Energy-Walk-5--MitoAction-853x1024.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2025-Rochester-Energy-Walk-5--MitoAction-scaled.webp)[![Three people posing in front of a banner that reads ENERGY WALK; left: man in black shirt and cap, center: smiling boy in blue jersey number 14, right: tall person in white shirt and sunglasses.](https://www.mitoaction.org/wp-content/uploads/2026/05/2025-Rochester-Energy-Walk-7--MitoAction-683x1024.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2025-Rochester-Energy-Walk-7--MitoAction-scaled.webp)[![Group of children and a few adults posing for a photo outdoors in front of a banner and chain-link fence at a sports event.](https://www.mitoaction.org/wp-content/uploads/2026/05/2025-Rochester-Energy-Walk-6--MitoAction-1024x1024.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2025-Rochester-Energy-Walk-6--MitoAction-scaled.webp) ### Meet Jesi ![](https://assets.classy.org/5901498/769b4780-deed-11e9-8ad4-0ea37b87b97c.jpg) Jesi, like his two older brothers, was born several weeks prematurely. Throughout his childhood he suffered from seizures, which became more prominent around the age of 19. After high school, Jesi was employed at a variety of local businesses. He was first married in 1986 and had a daughter in 1987. He then had twin daughters in 1990. Jesi’s health steadily declined throughout his thirties and forties. His hearing loss worsed over time, as did his comprehension of basic information. Jesi’s second wife became his primary caretaker as his health issues became more significant. Jesi experienced numbness in his hands and headaches that increased in frequency. He was permanently disabled and no longer able to work. Jesi was a father to his second wife’s five children in addition to becoming a grandfather. Throughout his forties, Jesi was hospitalized repeatedly with what the doctors thought to be seizures and strokes. There were instances when Jesi was in the ICU in a coma for several days. Each time he overcame these significant health episodes, his baseline became lower. ![](https://assets.classy.org/5901498/f72e3c0e-deed-11e9-8b88-0a14ba1b6518.jpg) By the time Jesi was in his late forties, an on-call neurologist at the hospital who coincidentally was his older brother Todd’s neurologist, suspected he had **MELAS**. A blood test **confirmed** this. Jesi declined significantly to the point that he could no longer function independently. By 2014, his hearing was almost completely gone and he was extremely unsteady on his feet. He began having episodes of confusion. There were times he did not recognize family members and became aggressive. On April 11th, 2016, Jesi celebrated his 50th birthday with his family. Although he was wheelchair bound, and unable to carry on logical conversations, he still smiled and laughed with his family. In September, 2016, Jesi stopped eating solid food and there was a drastic change in his health. Upon the visiting nurse’s suggestion, Jesi was placed on Hospice care. He passed away eight days later. ### Meet Todd ![](https://assets.classy.org/5901498/7624670a-df10-11e9-8939-0eb25c9a476e.jpg) Todd was born in 1957, arriving 4 months early. He was the oldest of three brothers. His middle brother, Christopher, passed away in his thirties of an unknown cause that the family now believes was MELAS. His younger brother Jesi predeceased him by 14 months at the age of 50. Throughout his childhood, Todd had poor vision and hearing loss that increased in severity as he aged. He had an unsteady gait and chronic headaches. Todd also had significant gastrointestinal issues. He married his first wife in 1975 and his daughter Stacy was born in 1980. He remarried in 1981 and his son Matthew was born in 1983. His daughter Elizebeth was born in1984. When Todd was 55 years old, after working 25 years at MKS Instruments, it was determined that he was no longer able to work and was placed on disability. He struggled with accepting this after working his entire life, but chose to spend his time with his three grandchildren. ![](https://assets.classy.org/5901498/ffc8ec88-dfbf-11e9-aaa8-0a42be36d970.png) Todd was seeing a neurologist for neuropathy and nerve pain, among other health issues including memory loss and stroke-like episodes. In 2015 at the age of 57, Todd’s neurologist tested him for **MELAS**, after making the connection to Jesi, who had already been diagnosed. Todd’s diagnosis was **confirmed** through a blood test and he started having episodes characterized by extreme confusion and stroke-like behaviors. Upon his most extreme episode in January 2015, Todd was hospitalized and had a seizure where he lost function of the left side of his body for several weeks. Todd gradually lost his independence and control over his body and mind. In May 2017, Todd’s quality of life declined significantly. It was a struggle to get him out of bed and he refused to bathe, get dressed, and eat or drink on most days. He started having trouble remembering to take his medications and started choking on foods. He also stopped taking pleasure in doing the things he loved, such as watching his grandchildren play soccer and spending time with his son watching TV. Todd declined significantly in June and July 2017, resulting in nursing home placement three weeks after he turned 60. He passed away a few months later, on November 10, 2017, surrounded by his children. ## Thank You Sponsors and Donors! ### Silver Sponsor --- ### [FAOD Programs and Support](https://www.mitoaction.org/fatty-acid-oxidation-disorders/faod-programs-and-support/) **Published:** February 7, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # FAOD Programs & Support ##### MitoAction provides comprehensive information to the FAOD community through resources and support. Find resources regarding [diagnosis](https://www.mitoaction.org/fatty-acid-oxidation-disorders/faod-diagnosis/ "FAOD Symptoms"), [symptoms](https://www.mitoaction.org/fatty-acid-oxidation-disorders/faod-symptoms/ "FAOD Symptoms"), [treatment](https://www.mitoaction.org/fatty-acid-oxidation-disorders/faod-treatment/ "FAOD Treatment") options, [day-to-day support](https://www.mitoaction.org/fatty-acid-oxidation-disorders/day-to-day-with-faod/ "Day to Day with FAOD"), and more, we are here to support you on every step of your journey with FAODs. If you are looking for somewhere to start, MitoAction’s monthly [Expert Series](https://www.mitoaction.org/resource_type/type-faod-expert-series/ "FAOD Expert Series") provides the must updated clinical information as well as quality of life support for patients and families living with all types of mitochondrial disease as well as FAODs. You can also find information on our annual [International Metabolic Conference](https://www.mitoaction.org/events/internationalmetabolicconference/ "International Metabolic Conference") for Fatty Acid Oxidation Disorders. This is a great opportunity to spend time with other families on a similar journey. Listen, share, and be heard. --- ### [Fatty Acid Oxidation Disorders](https://www.mitoaction.org/fatty-acid-oxidation-disorders/) **Published:** December 14, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # Fatty Acid Oxidation Disorders (FAODS) ##### Fatty Acid Oxidation Disorders are a group of rare, metabolic disorders in which the body cannot break down fat into usable energy Fatty acid oxidation disorders (FAODs) encompass a group of rare metabolic conditions that hinder the body’s ability to break down fat for energy production. In times of stress, such as illness or fasting, the body relies on fats as a crucial energy source. However, individuals with FAODs face challenges in utilizing fats effectively during these periods, leading to various symptoms that can range from acute to chronic and, in severe cases, even result in sudden death. Living with an FAOD can be likened to running a household on two AA batteries that never charge beyond 20%. The energy-intensive appliances and systems in the home, like the refrigerator, washing machine, air conditioner, and lights, require a constant and reliable energy source to function optimally. Similarly, individuals with FAODs struggle with limited energy availability due to the impaired breakdown of fats. Managing an FAOD necessitates special care to maintain sufficient energy levels and prevent energy crashes. When the individual’s oral intake cannot meet the energy demands, alternative fuel sources such as sugar or glucose may be administered orally or intravenously (IV) to avert an energy crash and stabilize energy levels. At MitoAction, we understand the complexities of FAODs and provide valuable resources to support individuals and families navigating these conditions. Our comprehensive FAOD resources offer information on diagnosis, management strategies, dietary considerations, and the latest research advancements. We aim to empower individuals living with FAODs, their caregivers, and healthcare providers with the knowledge and tools needed to optimize their quality of life and promote well-being. Explore our FAOD resources and join our supportive community to access reliable information, connect with others facing similar challenges, and find solace in knowing you are not alone in your FAOD journey. Together, we can make a difference and enhance the lives of those affected by fatty acid oxidation disorders. ### FAOD Resources: [General FAOD Resources](https://www.mitoaction.org/fatty-acid-oxidation-disorders/faod-resources/) [Common Labs for FAODs](https://www.mitoaction.org/fatty-acid-oxidation-disorders/faod-resources/#common-labs) [You Won’t Miss the Fat](https://www.mitoaction.org/fatty-acid-oxidation-disorders/faod-resources/#you-wont-miss-the-fat) [Clinical Trial Information](https://www.mitoaction.org/fatty-acid-oxidation-disorders/faod-resources/#clinical-trial-information) [Kids’ Resources](https://www.mitoaction.org/fatty-acid-oxidation-disorders/faod-resources/#kids-resources) [MitoAction Resources](https://www.mitoaction.org/fatty-acid-oxidation-disorders/faod-resources/#mitoaction-resources) --- ### [Dalia's Wish](https://www.mitoaction.org/programs-support/mitoaction-programs/dalias-wish/) **Published:** December 8, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Events](https://www.mitoaction.org/events/ "Back to Events") # Dalia’s Wish Dalia’s Wish provides wish trips to children affected by mitochondrial diseases and provides a magical experience for the whole family! ![](https://www.mitoaction.org/wp-content/uploads/2023/01/Dalias-Wish-Featured-Image-1024x576.jpg) MitoAction is honored to celebrate the life of Dalia Flaggert, daughter of Board Member Jessica Fein and her husband, Rob Flaggert. Dalia passed away on March 11, 2022, one week after her 17th birthday. One of her greatest childhood memories was her family’s wish trip to Give Kids the World Village. MitoAction has dedicated this program to Dalia in hopes of providing other children with mito an unforgettable trip of a lifetime. We are so excited to share our partnership with Give Kids the World Village in Orlando, FL. This partnership allows us to grant wishes to children affected by mitochondrial disease by providing magical experiences for the entire family. These once-in-a-lifetime wish trips will help families recapture some of the precious moments that may have been missed due to hospital stays or illness because of their mitochondrial disease. **Join us to make wishes come true for children with mitochondrial disease!** Applications for nominations are currently closed, but will re-open in the Fall of 2026. ##### Qualification Criteria - Wish child must be between ages 3-18 - Child must have a life threatening or critical illness that is documented and affirmed by a treating physician - Child can not have received a prior wish or dream from any wish granting organization – *this is a once in a lifetime opportunity*! - Family must live in the United States ##### Who Can Join? - (2) parents or guardians - All siblings living in the home with the wish child If you know of a child that meets the criteria listed above, he/she may be entitled to a wish through MitoAction. Please click the nomination button below and complete the form. Application Opens Fall 2026 ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Dalias-Wish-1024x512.jpg) ![](https://www.mitoaction.org/wp-content/uploads/2025/05/Screenshot-2024-10-28-at-12.31.53 PM-1024x677.png)![](https://www.mitoaction.org/wp-content/uploads/2025/05/2M6A2897-Edit-1024x731.jpg)![](https://www.mitoaction.org/wp-content/uploads/2025/05/279A0213-1024x731.jpg)![](https://www.mitoaction.org/wp-content/uploads/2025/05/Screenshot-2025-05-16-at-11.05.12 AM-1024x670.png)![](https://www.mitoaction.org/wp-content/uploads/2025/05/458988637_1072250588236890_1318303376608243535_n-1024x687.jpg)![](https://www.mitoaction.org/wp-content/uploads/2025/05/Screenshot-2025-05-16-at-11.06.02 AM.png)![](https://www.mitoaction.org/wp-content/uploads/2025/05/279A9138-1024x683.jpg)![](https://www.mitoaction.org/wp-content/uploads/2025/05/279A0093-1024x785.jpg)![](https://www.mitoaction.org/wp-content/uploads/2025/05/2M6A2645-1024x731.jpg)![](https://www.mitoaction.org/wp-content/uploads/2025/05/calvinwishtripreveal-1024x768.jpg)![](https://www.mitoaction.org/wp-content/uploads/2025/05/279A9252-1024x683.jpg)![](https://www.mitoaction.org/wp-content/uploads/2025/05/Screenshot-2025-05-16-at-11.05.47 AM-1024x680.png) --- ### [Our Staff](https://www.mitoaction.org/about-us/our-team/) **Published:** December 14, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ### Kira Mann [Read Bio](https://www.mitoaction.org/bios/kira-mann/) ### Stephanie Harry [Read Bio](https://www.mitoaction.org/bios/stephanie-harry/) ### Sydney Watkins [Read Bio](https://www.mitoaction.org/bios/emily-grandahl/) ### Michael Green [Read Bio](https://www.mitoaction.org/bios/michael-green/) ### Our Board of Directors ### Paul Harty [Read Bio](https://www.mitoaction.org/bios/paul-harty/) ### Gordon Russell [Read Bio](https://www.mitoaction.org/bios/gordon-russell/) ### Phillip Borden, MBA [Read Bio](https://www.mitoaction.org/bios/philip-borden/) ### Natashia Cheatham [Read Bio](https://www.mitoaction.org/bios/natashia-cheatham/) ### Saad Dinno, RPh, FIACP, FACA [Read Bio](https://www.mitoaction.org/bios/saad-dinno/) ### Jessica Fein [Read Bio](https://www.mitoaction.org/bios/jessica-fein/) ### John Kelly [Read Bio](https://www.mitoaction.org/bios/john-kelly/) ### Allen Williams [Read Bio](https://www.mitoaction.org/bios/allen-williams/) ## **Exciting news ahead for MitoAction! We’re about to announce updates to our Medical Advisory Committee.** --- ### [Speakers](https://www.mitoaction.org/events/internationalmetabolicconference/speakers/) **Published:** January 6, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # 2026 IMC Speakers Join MitoAction and the International Network for Fatty Acid Oxidation Research and Management (INFORM) for the 7th Annual International Metabolic Conference for Fatty Acid Oxidation Disorders on July 25-26, 2026. --- ### [Types of Mitochondrial Diseases](https://www.mitoaction.org/mitochondrial-disease/types-of-mitochondrial-diseases/) **Published:** November 29, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Mitochondrial Disease](https://www.mitoaction.org/mitochondrial-disease/ "Back to Mitochondrial Disease") # Types of Mitochondrial Diseases Mitochondrial disease is an inherited chronic illness that can be present at birth or develop later in life. There are many types of mitochondrial diseases and it is estimated that 1 in 4,000 people have Mito. ![](https://www.mitoaction.org/wp-content/uploads/2024/07/Young-boy-and-his-mother-meeting-with-a-doctor-1024x683.webp) Mitochondrial disease is an inherited chronic illness that can be present at birth or develop later in life. There are many types of mitochondrial diseases and it is estimated that 1 in 4,000 people have Mito. Mitochondria are the parts of the cell that help turn the energy we get from food into energy that the body can use. They are also important in the communication between body parts and in creating other materials the body needs. Mitochondrial conditions can cause a variety of signs and symptoms in many parts of the body, particularly those that use a lot of energy like muscles and the brain. Depending on how severe the mitochondrial disorder is, the illness can range in severity from mild to fatal. It is important to determine which type of mitochondrial disease is present, in order to determine the best course of treatment and to predict the risk of recurrence for future children. We encourage you to take a look at the different types of mitochondrial diseases below. Connecting with others impacted by a rare disease allows for vital information to be shared about day-to-day life, prevents isolation, and gives hope. Please contact [MitoAction for peer support](https://www.mitoaction.org/programs-support/patient-and-family-support/mito411/ "Mito411") opportunities at 888-MITO-411 or email . ### Types of Mitochondrial Diseases & Related Conditions - ##### [ADOA: Autosomal Dominant Optic Atrophy](https://www.mitoaction.org/conditions/adoa-autosomal-dominant-optic-atrophy/) - ##### [Alpers Disease](https://www.mitoaction.org/conditions/alpers-disease/) - ##### [Barth Syndrome](https://www.mitoaction.org/conditions/barth-syndrome/) - ##### [CDD: Creatine Deficiency Disorders](https://www.mitoaction.org/conditions/cdd-creatine-deficiency-syndromes/) - ##### [Complex I Deficiency](https://www.mitoaction.org/conditions/complex-i-deficiency/) - ##### [Complex II Deficiency](https://www.mitoaction.org/conditions/complex-ii-deficiency/) - ##### [Complex III Deficiency](https://www.mitoaction.org/conditions/complex-iii-deficiency/) - ##### [Complex IV Deficiency](https://www.mitoaction.org/conditions/complex-iv-deficiency/) - ##### [Complex V Deficiency](https://www.mitoaction.org/conditions/complex-v-deficiency/) - ##### [CPEO: Chronic Progressive External Ophthalmoplegia](https://www.mitoaction.org/conditions/cpeo-chronic-progressive-external-ophthalmoplegia/) - ##### [Friedreich’s Ataxia](https://www.mitoaction.org/conditions/friedreichs-ataxia/) - ##### [KSS: Kearns-Sayre syndrome](https://www.mitoaction.org/conditions/kss-kearns-sayre-syndrome/) - ##### [Lactic Acidosis](https://www.mitoaction.org/conditions/lactic-acidosis/) - ##### [Leigh Syndrome](https://www.mitoaction.org/conditions/leigh-syndrome/) - ##### [LHON Plus: Lebers Hereditary Optic Neuropathy Plus](https://www.mitoaction.org/conditions/lhon-plus-lebers-hereditary-optic-neuropathy-plus/) - ##### [LHON: Leber Hereditary Optic Neuropathy](https://www.mitoaction.org/conditions/lhon-leber-hereditary-optic-neuropathy/) - ##### [Luft Disease](https://www.mitoaction.org/conditions/luft-disease/) - ##### [MDS: Mitochondrial DNA Depletion Syndrome](https://www.mitoaction.org/conditions/mds-mitochondrial-dna-depletion-syndrome/) - ##### [MELAS: Mitochondrial Myopathy Encephalopathy Lactic Acidosis and Stroke-Like Episodes](https://www.mitoaction.org/conditions/melas-mitochondrial-myopathy-encephalopathy-lactic-acidosis-and-stroke-like-episodes/) - ##### [MERRF: Myoclonic Epilepsy with Ragged-Red Fibers](https://www.mitoaction.org/conditions/merrf-myoclonic-epilepsy-with-ragged-red-fibers/) - ##### [MIDD: Maternally Inherited Diabetes and Deafness](https://www.mitoaction.org/conditions/maternally-inherited-diabetes-and-deafness-midd/) - ##### [Mitochondrial Myopathy](https://www.mitoaction.org/conditions/mitochondrial-myopathy/) - ##### [MNGIE: Mitochondrial Neurogastrointestinal Encephalopathy](https://www.mitoaction.org/conditions/mngie-mitochondrial-neurogastrointestinal-encephalopathy/) - ##### [mtARS: Mitochondrial Aminoacyl-tRNA Synthetase Disorders](https://www.mitoaction.org/conditions/mtars-mitochondrial-aminoacyl-trna-synthetase-disorders/) - ##### [Multiple Mitochondrial Dysfunction Syndrome](https://www.mitoaction.org/conditions/multiple-mitochondrial-dysfunction-syndrome/) - ##### [NARP: Neuropathy Ataxia Retinitis Pigmentosa Syndrome](https://www.mitoaction.org/conditions/narp-neuropathy-ataxia-retinitis-pigmentosa-syndrome/) - ##### [PCQD: Primary CoQ10 Deficiency](https://www.mitoaction.org/conditions/primary-coq10-deficiency/) - ##### [Pearson syndrome](https://www.mitoaction.org/conditions/pearson-syndrome/) - ##### [PMM: Primary Mitochondrial Myopathy](https://www.mitoaction.org/conditions/pmm-primary-mitochondrial-myopathy/) - ##### [POLG-Related Disorders](https://www.mitoaction.org/conditions/polg-related-disorders/) - ##### [POLG2-Related Progressive External Ophthalmoplegia](https://www.mitoaction.org/conditions/polg2-related-progressive-external-ophthalmoplegia/) - ##### [Respiratory Chain](https://www.mitoaction.org/conditions/respiratory-chain/) - ##### [TK2d: Thymidine Kinase 2 Deficiency](https://www.mitoaction.org/conditions/tk2d-thymidine-kinase-2-deficiency/) --- ### [Types of FAOD](https://www.mitoaction.org/fatty-acid-oxidation-disorders/types-of-faod/) **Published:** December 14, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") There are various types of Fatty Acid Oxidation Disorders (FAODs). Thanks to our partnership with the International Network for Fatty Acid Oxidation Research and Management (INFORM), below is an overview of the various FAODs, their diagnosis, treatments and symptoms. It is important to determine which type of FAOD someone has, in order to determine the best course of treatment and to predict the risk of recurrence for future children. We encourage you to take a look at the different types of Fatty Acid Oxidation Disorders below. Connecting with others impacted by a rare disease allows for vital information to be shared about day-to-day life, prevents isolation, and gives hope. Please contact MitoAction for peer support opportunities at 888-MITO-411 or email . ### Types of FAODs & Related Conditions - ##### [ACAD9: Acyl-CoA Dehydrogenase 9 Deficiency](https://www.mitoaction.org/conditions/acacyl-coa-dehydrogenase-9-deficiency-acad9/) - ##### [CACT: Carnitine Acylcarnitine Translocase Deficiency](https://www.mitoaction.org/conditions/cact-carnitine-acylcarnitine-translocase-deficiency/) - ##### [CPT1a: Carnitine Palmitoyltransferase 1 Deficiency](https://www.mitoaction.org/conditions/cpt1a-carnitine-palmitoyltransferase-1-deficiency/) - ##### [CPT2: Carnitine Palmitoyltransferase 2 Deficiency](https://www.mitoaction.org/conditions/cpt2-carnitine-palmitoyltransferase-2-deficiency/) - ##### [CUD: Carnitine Uptake Defect](https://www.mitoaction.org/conditions/cud-carnitine-uptake-defect/) - ##### [GA2: Glutaric Acidemia Type II](https://www.mitoaction.org/conditions/ga2-glutaric-acidemia-type-ii/) - ##### [M/SCHAD: Medium/Short-Chain L-3-Hydroxyacyl-CoA Dehydrogenase Deficiency](https://www.mitoaction.org/conditions/m-schad-medium-short-chain-l-3-hydroxyacyl-coa-dehydrogenase-deficiency/) - ##### [MCAD: Medium-Chain Acyl-CoA Dehydrogenase Deficiency](https://www.mitoaction.org/conditions/mcad-medium-chain-acyl-coa-dehydrogenase-deficiency/) - ##### [MCKAT: Medium-Chain 3-Ketoacyl-CoA Thiolase Deficiency](https://www.mitoaction.org/conditions/mckat-medium-chain-3-ketoacyl-coa-thiolase-deficiency/) - ##### [SCAD: Short-Chain Acyl-CoA Dehydrogenase Deficiency](https://www.mitoaction.org/conditions/scad-short-chain-acyl-coa-dehydrogenase-deficiency/) - ##### [TFP / LCHAD: Mitochondrial Trifunctional Protein Deficiency / Long-Chain 3-Hydroxyacyl-CoA dehydrogenase Deficiency](https://www.mitoaction.org/conditions/tfp-lchad-mitochondrial-trifunctional-protein-deficiency-long-chain-3-hydroxyacyl-coa-dehydrogenase-deficiency/) - ##### [VLCAD: Very Long-Chain Acyl-CoA Dehydrogenase Deficiency](https://www.mitoaction.org/conditions/vlcad-very-long-chain-acyl-coa-dehydrogenase-deficiency/) --- ### [Mito in the News](https://www.mitoaction.org/news/mito-in-the-news/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") - September 10, 2026 #### [Mighty Therapeutics to Develop MYTX-255 for Fatty Acid Oxidation Disorders.](https://www.mitoaction.org/enabling-studies-of-mytx-255-a-mitochondrial-targeted-therapeutic-candidate/) - September 3, 2026 #### [First-Ever Mitochondrial Disease Advocacy Coalition Launched,Uniting 17 Groups Behind a Single Voice on Capitol Hill](https://www.mitoaction.org/first-ever-mitochondrial-disease-advocacy-coalition-launcheduniting-17-groups-behind-a-single-voice-on-capitol-hill/) - August 25, 2026 #### [Pretzel Therapeutics Advances PX578 into Phase 2 Study in Individuals Living with POLG-mediated Primary Mitochondrial Disease Following FDA Clearance of IND](https://www.mitoaction.org/pretzel-therapeutics-advances-px578-into-phase-2-study-in-individuals-living-with-polg-mediated-primary-mitochondrial-disease-following-fda-clearance-of-ind/) - June 16, 2026 #### [Mighty Therapeutics, Formerly Stealth BioTherapeutics, Announces New Name Honoring the Mitochondrial Disease Community](https://www.mitoaction.org/mighty-therapeutics-formerly-stealth-biotherapeutics-announces-new-name-honoring-the-mitochondrial-disease-community/) - April 16, 2026 #### [Khondrion Announces First Patient Dosed in Pivotal Phase 3 KHENERFIN Study of Sonlicromanol in Mitochondrial DNA 3243A>G Primary Mitochondrial Disease](https://www.mitoaction.org/khondrion-announces-first-patient-dosed-in-pivotal-phase-3-khenerfin-study-of-sonlicromanol-in-mitochondrial-dna-3243ag-primary-mitochondrial-disease/) - April 9, 2026 #### [Navigating the FDA’s Complete Response Letter and identifying a path forwardfor SL1009 (DCA).](https://www.mitoaction.org/navigating-the-fdas-complete-response-letter-and-identifying-a-path-forwardfor-sl1009-dca/) - November 5, 2025 #### [FDA Approval of KYGEVVI Marks a Defining Moment for Mitochondrial Disease Community and Families Affected by TK2d](https://www.mitoaction.org/fda-approval-of-kygevvi-marks-a-defining-moment-for-mitochondrial-disease-community-and-families-affected-by-tk2d/) - February 4, 2022 #### [TK2d Patient Voices Elevated at FDA](https://www.mitoaction.org/?p=67196) - July 14, 2021 #### [MitoAction Announces the Appointment of Three New Board Members](https://www.mitoaction.org/?p=64392) - January 14, 2020 #### [Children’s Hospital, Family of Justina Pelletier bring case to court](https://www.mitoaction.org/?p=7186) 1[2](?query-0-page=2&action=as_async_request_queue_runner&nonce=bb0088923f)[3](?query-0-page=3&action=as_async_request_queue_runner&nonce=bb0088923f) [Next Page](/wp-admin/admin-ajax.php?action=as_async_request_queue_runner&nonce=bb0088923f&query-0-page=2) --- ### [Clinical Trials & Studies](https://www.mitoaction.org/clinicaltrials/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Clinical trials are a key component of research. Scientists use medical knowledge to ask and answer scientific or medical questions in areas such as medication, medical device, teaching concepts, or behavioral change. Researchers first test new therapies in labs and/or animals. Treatments that are safe are moved into clinical trials to move the drug or therapy toward approval by the FDA. #### Commonly Used Terms This list was developed to provide easy-to-understand definitions of commonly used terms in clinical trials. [Commonly Used Clinical Terms](https://www.mitoaction.org/clinicaltrials/clinical-terms/) [![](https://www.mitoaction.org/wp-content/uploads/2022/01/mito-centerwatch.png)](https://www.centerwatch.com/clinical-trials/listings/condition/2001/mitochondrial-diseases/?utm_source=advocacy-group&utm_medium=referral&utm_campaign=mitoaction/) [![](https://www.mitoaction.org/wp-content/uploads/2022/01/FAOD-centerwatch.png)](https://www.centerwatch.com/clinical-trials/listings/search/?q=Fatty+Acid+Oxidation+Disorder&place=&geo_lat=&geo_lng=&user_country=&radius=) ## Types of Clinical Trials ![](https://www.mitoaction.org/wp-content/uploads/2021/10/clinical-1173x838-1-1024x732-1.jpg)TreatmentTest new treatments or devices, new combinations of drugs, or new approaches to surgery or radiation therapy. Treatment trials are often categorized by phases I through III. Natural HistoryProvide information about how health and disease progress over time. PreventionEvaluate the effectiveness of ways to reduce the risk of developing a disease or preventing a disease from returning. DiagnositicDevelop better tests or procedures to identify/diagnose a particular disease or condition. ScreeningAssess new ways of detecting disease earlier in healthy people. Quality of Life (or Supportive Care)Evaluate measures to improve comfort of and quality of life for people with chronic illnesses through better therapies or psychosocial interventions. ## Clinical Trial Phases ![](https://www.mitoaction.org/wp-content/uploads/2023/09/Clinical-Trials-Graphic-Phase-1-1024x576.jpg)### Phase I Trials Researchers test an experimental drug or treatment in a small group of people (20–80) for the first time, often using healthy volunteers to test drug metabolism, safety, and dose ranges.The purpose is to evaluate its safety and identify side effects. ![](https://www.mitoaction.org/wp-content/uploads/2023/09/Clinical-Trials-Graphic-Phase-2-1024x576.jpg)### Phase II Trials The experimental drug or treatment is administered to a larger group of people (100–300) to determine its effectiveness, optimal therapeutic dose, and to further evaluate its safety. This phase may be blinded (unknown if patient receives the study drug) or open label studies (known if patient receives study drug) in the target population. The target population encompasses the group for which the drug is ultimately intended. Any drug metabolism, safety, or dosing difference between the Phase I healthy individuals and the Phase II target population is also evaluated.Hints of efficacy may be obtained as well. ![](https://www.mitoaction.org/wp-content/uploads/2023/09/Clinical-Trials-Graphic-Phase-3-1024x576.jpg)### Phase III Trials Phase III trials are larger than phase II and involve hundreds or even thousands of participants. Phase III trials are used to confirm the benefit and safey of a treatment, on a larger scale. After the Phase III trial, the FDA reviews the clinical trial results to make sure the treatment is safe and effective for people to use. The FDA decides whether to approve the treatment so that it is available for all patients. ![](https://www.mitoaction.org/wp-content/uploads/2023/09/Clinical-Trials-Graphic-Phase-4-1024x576.jpg)### Phase IV Trials Phase IV clinical trials are used to learn more about long-term side effects and efficacy for treatments and medication after they have been approved by the FDA. Researchers monitor patients while on the new medication to gather data on the long-term safety and effectiveness. ![](https://www.mitoaction.org/wp-content/uploads/2021/08/MitoAction.png)**MitoAction Approved to Host FDA-Recognized Patient-Focused Drug Development Meeting on MELAS** MitoAction has been officially approved by the FDA to host a PFDD Meeting focused on MELAS (Mitochondrial Encephalomyopathy, Lactic Acidosis, and Stroke-like episodes)**. The meeting will take place on February 10, 2026!** Click [HERE](https://www.mitoaction.org/wp-content/uploads/2025/05/MELAS-PFDD-Meeting-Press-Release-1.pdf) to read the full press release from MitoAction --- ![](https://www.mitoaction.org/wp-content/uploads/2024/04/Tisento-full20logo-HRZ-RGB201-1024x327.png)“Tisento Highlights Two Venues Advancing Patient-Focused Therapeutic Development for Mitochondrial Diseases” Click [HERE](https://www.tisentotx.com/news/tisento-highlights-two-venues-advancing-patient-focused-therapeutic-development-for-mitochondrial-diseases) to read the full press release from Tisento, including details on our PFDD Meeting for MELAS on February 10, 2026! --- ![](https://www.mitoaction.org/wp-content/uploads/2024/04/15.png)“Stealth BioTherapeutics Announces FDA Accelerated Approval of FORZINITY™ (elamipretide HCl), the First Therapy for Progressive and Life-limiting Ultra-rare Genetic Disease Barth Syndrome” Click [HERE](https://stealthbt.com/stealth-biotherapeutics-announces-fda-accelerated-approval-of-forzinity-elamipretide-hcl-the-first-therapy-for-progressive-and-life-limiting-ultra-rare-genetic-disease-barth-syndrome/) to read the full press release from Stealth --- [![](https://www.mitoaction.org/wp-content/uploads/2024/12/Saol-logo-FINAL_®-1024x442.png)](https://www.prnewswire.com/news-releases/saol-therapeutics-announces-submission-of-new-drug-application-nda-to-the-us-fda-for-sl1009-302320045.html?tc=eml_cleartime)“Saol Therapeutics announces FDA acceptance of New Drug Application for SL1009 for treatment of Pyruvate Dehydrogenase Complex Deficiency” Click [HERE](https://www.mitoaction.org/fda-denies-approval-for-dca/ "HERE") to read the full press conference on SAOL’s submission for a new PDCD treatment. --- ![](https://www.mitoaction.org/wp-content/uploads/2024/11/3d9053db-96f0-481d-8756-49f53aabf67c.png)“Khondrion Secures EU Orphan Drug Designation for Lead Compound Sonlicromanol in Treatment of Inherited Mitochondrial Oxidative Phosphorylation Defects.” Click [HERE](https://ozv6t88ab.cc.rs6.net/tn.jsp?f=001modydeHhYf9RTTbYCk4VzSqcNX3b4uGPc8kCC6164bi3dkdiEubMeqXaxRCP5oU1pNHpsaJ4_y_B9lBK544YL08-y03-C-ukywx9M8O8V3z3Tsd1WqPJ0njE6jh5__BOvxdQ8Y4S8xerwYVancaC1--uGPhzQCUrfmET5cAqQMwPDBAW8h1ZyL1ZtrMX8HidAM_2KlJZnhYZu7FzavVDkX16VBlTSWUSj1YVOGN7l93ozab1N5WTwRkqfM_73gawIeo9IpHpXOrY_vjz7cxmuUWkWlN3K937v3rtVEHWeZLVBW3ZVzFXWYhQ4qxejim1mSPjeTsIcDaGrauigPilmI1XI22NbsnfWTA8iIrplss=&c=VQhtVgnie-BpxV8fh6idzLIoL1FiajZcBlKKg084dFSwTVrnt4w4ow==&ch=BN-pGs3VIc8gCjnYal-7MU5nJ0nu94L4igDfTdlZtPJkHTwx4gIYIg==) to read the full press release from Khondrian --- ![](https://www.mitoaction.org/wp-content/uploads/2025/09/pretzeltherapeutics.png)“Pretzel Therapeutics Initiates Phase 1 Clinical Study Evaluating PX579, Lead Therapeutic in its Bioenergetics Restoration Franchise” Click [HERE](https://ozv6t88ab.cc.rs6.net/tn.jsp?f=001modydeHhYf9RTTbYCk4VzSqcNX3b4uGPc8kCC6164bi3dkdiEubMen4j98Cae9qmJxuVmsqr7Awg8I8qE0nwL4yc0t2iIbvCULpSl70Wmv0KE-LbbslqrpbYE0tM9PSTD8gSQbMNvAuKkKRrZ6HQnWEH-Cccb4NZ2sfqHGZBJN17zOrqBfGeEntuWkcxqDZr4T-wGRFvq-Pxj8-7d2BqpgJVcDCq6DVI-BSxVZrzpyEe8wKVbNyKBLROnEFFkiACn1PnxZqq2ZEpQNmAbmwI0LTznmmKnvr4G-majJwu6ucULWDjmxFluw-elq8-dRIFo_cd8IzoTsw=&c=VQhtVgnie-BpxV8fh6idzLIoL1FiajZcBlKKg084dFSwTVrnt4w4ow==&ch=BN-pGs3VIc8gCjnYal-7MU5nJ0nu94L4igDfTdlZtPJkHTwx4gIYIg==) to read the full press release from Pretzel Therapeutics ## Current Clinical Trials [![](https://www.mitoaction.org/wp-content/uploads/2025/02/UPMC-MCAD-Study-2-1024x731.png)](https://www.mitoaction.org/wp-content/uploads/2025/11/MCAD-Research-Flyer_updated-11.3.2025.pdf)[![](https://www.mitoaction.org/wp-content/uploads/2024/12/Living-Rare-study-1024x731.png)](https://livingrarestudy.org/)[![](https://www.mitoaction.org/wp-content/uploads/2024/12/Ultragenyx-MCADD-study-1024x731.png)](https://www.mitoaction.org/wp-content/uploads/2024/12/MCADD-Recruitment-Flyer-with-QR-Code-and-MRCC-number.pdf)[![](https://www.mitoaction.org/wp-content/uploads/2024/10/Tinsento-Prizm-MELAS-1024x731.png)](https://www.tisentotx.com/prizm)[![](https://www.mitoaction.org/wp-content/uploads/2024/03/Tinsento-MELAS-1024x731.png)](https://www.mitoaction.org/wp-content/uploads/2024/10/Tisento-Ado-Flyer-Aug24-TEEN.APPROVED-1.pdf)[![](https://www.mitoaction.org/wp-content/uploads/2023/11/INFORM-MCAD-Study-1024x731.png)](https://informnetwork.org/10-week-study-looking-at-the-medication-triheptanoin-and-its-effects-on-fasting-and-reduction-in-blood-glucose-levels/)[![](https://www.mitoaction.org/wp-content/uploads/2023/09/Abliva-Falcon-Study-1024x731.png)](https://abliva.com/research-and-development/clinicaltrials-falcon/)[![](https://www.mitoaction.org/wp-content/uploads/2023/04/astellas-1024x731.png)](https://www.clinicaltrials.astellas.com/study/?pid=0367-CL-1201)[![](https://www.mitoaction.org/wp-content/uploads/2023/04/ptc2-1024x731.png)](https://www.ptcbio.com/therapeutic-areas/aromatic-l-amino-acid-decarboxylase-deficiency/)[![](https://www.mitoaction.org/wp-content/uploads/2023/06/new-logo-1024x731.jpg)](https://clinicaltrials.gov/ct2/show/NCT04632953?term=disease+monitoring+program&draw=2&rank=5)[![](https://www.mitoaction.org/wp-content/uploads/2023/04/saol-1024x731.png)](https://saolrx.com/saol-therapeutics-and-genedx-inc-collaborate-to-detect-patients-with-rare-mitochondrial-disease/)[![](https://www.mitoaction.org/wp-content/uploads/2023/04/khondrion-1024x731.png)](https://www.khondrion.com/khondrion-announces-sonlicromanol-phase-iib-progress-supporting-phase-iii-development-in-melas-spectrum-disorders/)[![](https://www.mitoaction.org/wp-content/uploads/2023/05/UCB-Updated-1024x731.jpg)](https://www.ucb.com/clinical-studies/Clinical-studies-index/MT1621) --- ### [MitoArtisan’s Playtime](https://www.mitoaction.org/programs-support/mitoaction-programs/mitoartisans-playtime/) **Published:** April 4, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [MitoAction Programs](https://www.mitoaction.org/programs-support/mitoaction-programs/ "MitoAction Programs") # MitoArtisan’s Playtime MitoArtisan’s Playtime is a place for artists to create, connect and heal with other artists in our community. ![](https://www.mitoaction.org/wp-content/uploads/2024/04/MitoArtisans-Playtime-Background-of-Colored-Pencils-1024x512.webp) MitoArtisan’s Playtime is a place for artists to create, connect and heal with other artists in our community. Whether you are young or old, a seasoned artist or just curious, we encourage you to join us as we explore art together. This class is a safe place for **all** of our mito patients and families to explore! *Our MitoArtisan’s Playtime lasts between 1.5 to 2 hours, but we recognize that everyone’s energy is different in our Mito Community. Please know that we support our participants pacing themselves, breaking as needed, and enjoying this time in a way that is most meaningful to them! Please join us for as long as you are able! All are welcome!* ### Search MitoArtisan’s Playtimes - [![MitoArtisan’s Playtime – Course 10: Zebra Butterfly](https://www.mitoaction.org/wp-content/uploads/2026/09/MitoArtisans-Course-10-4.png)](https://www.mitoaction.org/resources/mitoartisans-playtime-course-10-zebra-butterfly/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [MitoArtisans Playtime](https://www.mitoaction.org/resource_type/mitoartisans-playtime/) ###### [MitoArtisan’s Playtime – Course 10: Zebra Butterfly](https://www.mitoaction.org/resources/mitoartisans-playtime-course-10-zebra-butterfly/) September 8, 2026 - [![MitoArtisan’s Playtime – Course 9: Writing as Healing Workshop](https://www.mitoaction.org/wp-content/uploads/2026/05/MitoArtisans-Course-9.png)](https://www.mitoaction.org/resources/mitoartisans-playtime-course-9-writing-as-healing-workshop/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [MitoArtisans Playtime](https://www.mitoaction.org/resource_type/mitoartisans-playtime/) Brad Buchanan ###### [MitoArtisan’s Playtime – Course 9: Writing as Healing Workshop](https://www.mitoaction.org/resources/mitoartisans-playtime-course-9-writing-as-healing-workshop/) May 28, 2026 - [![MitoArtisan’s Playtime – Course 8: Writing as Healing Workshop](https://www.mitoaction.org/wp-content/uploads/2026/01/MitoArtisans-Course-8.png)](https://www.mitoaction.org/resources/mitoartisans-playtime-course-8-writing-as-healing-workshop/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [MitoArtisans Playtime](https://www.mitoaction.org/resource_type/mitoartisans-playtime/) Brad Buchanan ###### [MitoArtisan’s Playtime – Course 8: Writing as Healing Workshop](https://www.mitoaction.org/resources/mitoartisans-playtime-course-8-writing-as-healing-workshop/) January 9, 2026 - [![MitoArtisan’s Playtime – Course 7: Fall Leaves Falling](https://www.mitoaction.org/wp-content/uploads/2025/10/MitoArtisans-Course-7.png)](https://www.mitoaction.org/resources/mitoartisans-playtime-course-7-fall-leaves-falling/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [MitoArtisans Playtime](https://www.mitoaction.org/resource_type/mitoartisans-playtime/) Christine Knox ###### [MitoArtisan’s Playtime – Course 7: Fall Leaves Falling](https://www.mitoaction.org/resources/mitoartisans-playtime-course-7-fall-leaves-falling/) October 13, 2025 - [![MitoArtisan’s Playtime – Course 6: MitoHeart Project](https://www.mitoaction.org/wp-content/uploads/2025/08/MitoArtisans-Course-6-1.png)](https://www.mitoaction.org/resources/mitoartisans-playtime-course-6-mitohearts-project/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [MitoArtisans Playtime](https://www.mitoaction.org/resource_type/mitoartisans-playtime/) Karen Richtman ###### [MitoArtisan’s Playtime – Course 6: MitoHeart Project](https://www.mitoaction.org/resources/mitoartisans-playtime-course-6-mitohearts-project/) August 29, 2025 - [![MitoArtisan’s Playtime – Course 5: Art with Low Vision for Mito Artists](https://www.mitoaction.org/wp-content/uploads/2025/06/MitoArtisans-Course-5.png)](https://www.mitoaction.org/resources/mitoartisans-playtime-course-5-low-vision/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [MitoArtisans Playtime](https://www.mitoaction.org/resource_type/mitoartisans-playtime/) Joey Hernandez ###### [MitoArtisan’s Playtime – Course 5: Art with Low Vision for Mito Artists](https://www.mitoaction.org/resources/mitoartisans-playtime-course-5-low-vision/) June 17, 2025 - [![MitoArtisan’s Playtime – Course 4: The Horse of a Different Color & Stripes](https://www.mitoaction.org/wp-content/uploads/2025/02/MitoArtisans-Course-4.png)](https://www.mitoaction.org/resources/mitoartisans-playtime-course-4-horse-of-a-different-color/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [MitoArtisans Playtime](https://www.mitoaction.org/resource_type/mitoartisans-playtime/) Christine Knox ###### [MitoArtisan’s Playtime – Course 4: The Horse of a Different Color & Stripes](https://www.mitoaction.org/resources/mitoartisans-playtime-course-4-horse-of-a-different-color/) February 6, 2025 - [![MitoArtisan’s Playtime – Course 2: Eye to the Soul](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoArtisans-Course-2.png)](https://www.mitoaction.org/resources/mitoartisans-playtime-course-2-eye-to-the-soul/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [MitoArtisans Playtime](https://www.mitoaction.org/resource_type/mitoartisans-playtime/) Christine Knox ###### [MitoArtisan’s Playtime – Course 2: Eye to the Soul](https://www.mitoaction.org/resources/mitoartisans-playtime-course-2-eye-to-the-soul/) October 15, 2024 - [![MitoArtisan’s Playtime – Course 1: Snowdrop and Ladybird](https://www.mitoaction.org/wp-content/uploads/2024/04/MitoArtisans-Platime-Website-graphics.png)](https://www.mitoaction.org/resources/mitoartisans-playtime-course-1-snowdrop-and-ladybird/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [MitoArtisans Playtime](https://www.mitoaction.org/resource_type/mitoartisans-playtime/) Christine Knox ###### [MitoArtisan’s Playtime – Course 1: Snowdrop and Ladybird](https://www.mitoaction.org/resources/mitoartisans-playtime-course-1-snowdrop-and-ladybird/) April 14, 2024 ![](https://www.mitoaction.org/wp-content/uploads/2024/04/MitoArtisans-Playtime--1024x381.png) --- ### [Past Presentations](https://www.mitoaction.org/events/internationalmetabolicconference/past-presentations/) **Published:** January 6, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # Past Conference Presentations View presentations from past International Metabolic Conferences. - [![Clinician Panel](https://www.mitoaction.org/wp-content/uploads/2026/08/Family_clinican-2.png)](https://www.mitoaction.org/resources/clinician-panel-3/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [IMC 2026](https://www.mitoaction.org/resource_type/imc-2026/) ###### [Clinician Panel](https://www.mitoaction.org/resources/clinician-panel-3/) August 31, 2026 - [![Pregnancies in Women with Long-Chain Fatty Acid Oxidation Disorders](https://www.mitoaction.org/wp-content/uploads/2026/08/Dr-Grunert.png)](https://www.mitoaction.org/resources/pregnancies-in-women-with-long-chain-fatty-acid-oxidation-disorders/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [IMC 2026](https://www.mitoaction.org/resource_type/imc-2026/) ###### [Pregnancies in Women with Long-Chain Fatty Acid Oxidation Disorders](https://www.mitoaction.org/resources/pregnancies-in-women-with-long-chain-fatty-acid-oxidation-disorders/) August 31, 2026 - [![Developing of a Cell-in-a-Dish Model to Study Peripheral Neurology in LCHADD](https://www.mitoaction.org/wp-content/uploads/2026/08/Chen-Zhang.png)](https://www.mitoaction.org/resources/developing-of-a-cell-in-a-dish-model-to-study-peripheral-neurology-in-lchadd/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [IMC 2026](https://www.mitoaction.org/resource_type/imc-2026/) ###### [Developing of a Cell-in-a-Dish Model to Study Peripheral Neurology in LCHADD](https://www.mitoaction.org/resources/developing-of-a-cell-in-a-dish-model-to-study-peripheral-neurology-in-lchadd/) August 31, 2026 - [![Cultivating a New Normal: A Guide for New Families with FAODS](https://www.mitoaction.org/wp-content/uploads/2026/08/Dr-Arnold.png)](https://www.mitoaction.org/resources/cultivating-a-new-normal-a-guide-for-new-families-with-faods/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [IMC 2026](https://www.mitoaction.org/resource_type/imc-2026/) ###### [Cultivating a New Normal: A Guide for New Families with FAODS](https://www.mitoaction.org/resources/cultivating-a-new-normal-a-guide-for-new-families-with-faods/) August 31, 2026 - [![Beyond Traditional Physical Therapy: Exploring New Paths in Metabolic Care](https://www.mitoaction.org/wp-content/uploads/2026/08/Dr-Webber-and-Dr-Tucker.png)](https://www.mitoaction.org/resources/beyond-traditional-physical-therapy-exploring-new-paths-in-metabolic-care/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [IMC 2026](https://www.mitoaction.org/resource_type/imc-2026/) ###### [Beyond Traditional Physical Therapy: Exploring New Paths in Metabolic Care](https://www.mitoaction.org/resources/beyond-traditional-physical-therapy-exploring-new-paths-in-metabolic-care/) August 31, 2026 - [![Ultragenyx Study Updates & Initiatives](https://www.mitoaction.org/wp-content/uploads/2026/08/Kate-Simmons.png)](https://www.mitoaction.org/resources/ultragenyx-study-updates-initiatives/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [IMC 2026](https://www.mitoaction.org/resource_type/imc-2026/) ###### [Ultragenyx Study Updates & Initiatives](https://www.mitoaction.org/resources/ultragenyx-study-updates-initiatives/) August 31, 2026 - [![Understanding LC-FAOD Guidelines](https://www.mitoaction.org/wp-content/uploads/2026/08/Dr-Carell.png)](https://www.mitoaction.org/resources/understanding-lc-faod-guidelines/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [IMC 2026](https://www.mitoaction.org/resource_type/imc-2026/) ###### [Understanding LC-FAOD Guidelines](https://www.mitoaction.org/resources/understanding-lc-faod-guidelines/) August 31, 2026 - [![FAOD Updates](https://www.mitoaction.org/wp-content/uploads/2026/08/Dr-Vockley.png)](https://www.mitoaction.org/resources/faod-updates/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [IMC 2026](https://www.mitoaction.org/resource_type/imc-2026/) ###### [FAOD Updates](https://www.mitoaction.org/resources/faod-updates/) August 31, 2026 - [![From Supplements to Weight Loss- Maximizing Your Nutrition Health](https://www.mitoaction.org/wp-content/uploads/2026/08/Dr-Gillingham.png)](https://www.mitoaction.org/resources/from-supplements-to-weight-loss-maximizing-your-nutrition-health/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [IMC 2026](https://www.mitoaction.org/resource_type/imc-2026/) ###### [From Supplements to Weight Loss- Maximizing Your Nutrition Health](https://www.mitoaction.org/resources/from-supplements-to-weight-loss-maximizing-your-nutrition-health/) August 31, 2026 1[2](?query-0-page=2&action=as_async_request_queue_runner&nonce=bb0088923f)[3](?query-0-page=3&action=as_async_request_queue_runner&nonce=bb0088923f)…[11](?query-0-page=11&action=as_async_request_queue_runner&nonce=bb0088923f) [Next Page](/wp-admin/admin-ajax.php?action=as_async_request_queue_runner&nonce=bb0088923f&query-0-page=2) --- ### [Mitochondrial Disease Doctors](https://www.mitoaction.org/mitochondrial-disease/doctors/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Mitochondrial Disease](https://www.mitoaction.org/planning-and-preparation/ "Back to Section") # Mitochondrial Disease Doctors MitoAction maintains a list of doctors who specialize in mitochondrial diseases. Find a doctor in your area or one who sees patients virtually. ![](https://www.mitoaction.org/wp-content/uploads/2024/07/Young-boy-and-his-mother-meeting-with-a-doctor-1024x683.webp) To make it easier for mito patients to find a doctor, we maintain a list of experts who treat and research mitochondrial diseases. If you are a physician and would like to be added to this list or if you are a patient and do not see your doctor listed here, please email us at . - ### [Irina Anselm](https://www.mitoaction.org/mito-doctors/irina-anselm/) 300 Longwood Ave Boston, MA 02115 [(617) 355-6388](tel:+16173556388) - ### [Joshua Baker](https://www.mitoaction.org/mito-doctors/joshua-baker/) 225 E. Chicago Ave Chicago, IL 60611 [(800) 543-7362](tel:+18005437362) - ### [Richard Boles](https://www.mitoaction.org/mito-doctors/richard-boles/) 2050 Voorhees Town Center Voorhees Township, NJ 08043 [(856) 346-0005](tel:+18563460005) Sees Patients Virtually in California, New Jersey, Pennsylvania, Arizona, Florida - ### [Bruce Cohen](https://www.mitoaction.org/mito-doctors/bruce-cohen/) 215 W Bowery St Level 4 Akron, OH 44308 [(330) 543-8050](tel:+13305438050) - ### [Gregory Enns](https://www.mitoaction.org/mito-doctors/gregory-enns/) 730 Welch Rd 2A Palo Alto, CA 94304 [(650) 721-5804](tel:+16507215804) - ### [Marni Faulk](https://www.mitoaction.org/mito-doctors/marni-faulk/) 3401 Civic Center Blvd Phildelphia, PA 19104 [(267) 426-4961](tel:+12674264961) - ### [Richard Frye](https://www.mitoaction.org/mito-doctors/richard-frye/) 4045 E Union Hills Dr Suite 116 Phoenix, AZ 85050 [(321) 259-7111](tel:+13212597111) - ### [Renata Gallagher](https://www.mitoaction.org/mito-doctors/renata-gallagher/) 1825 4th St Sixth Floor San Fransisco, CA 94158 [(415) 476-2757](tel:+14154762757) - ### [Jaya Ganesh](https://www.mitoaction.org/mito-doctors/jaya-ganesh/) 1428 Madison Ave 1st Floor New York, NY 10029 [(212) 241-0915](tel:+12122410915) - ### [Ralitza Gavrilova](https://www.mitoaction.org/mito-doctors/ralitza-gavrilova/) 200 1st St SW Rochester, MN 55902 [(507) 284-1588](tel:+15072841588) - ### [Amy Goldstein](https://www.mitoaction.org/mito-doctors/amy-goldstein/) 3402 Civic Center Blvd Phildelphia, PA 19104 [(267) 426-4961](tel:+12674264961) - ### [Carol Greene](https://www.mitoaction.org/mito-doctors/carol-greene/) 827 Linden Ave Suite M2C200 Baltimore, MD 21201 [(410) 328-3335](tel:+14103283335) - ### [Andrea Gropman](https://www.mitoaction.org/mito-doctors/andrea-gropman/) 111 Michigan Ave NW Washington, DC 20010 [(888) 884-2327](tel:+18888842327) - ### [Richard Haas](https://www.mitoaction.org/mito-doctors/richard-haas/) 8001 Frost St Nelson Pavilion, 3rd Floor San Diego, CA 92123 [(858) 966-5819](tel:+18589665819) - ### [Bryan Hainline](https://www.mitoaction.org/mito-doctors/bryan-hainline/) 1002 Wishard Blvd Indianapolis, IN 46202 [(317) 944-3966](tel:+13179443966) - ### [Michio Hirano](https://www.mitoaction.org/mito-doctors/michio-hirano/) 710 W 168th St New York, NY 10032 [(646) 426-3876](tel:+16464263876) - ### [Kevin Houston](https://www.mitoaction.org/mito-doctors/kevin-houston/) 243 Charles St 8th floor Boston, MA 02114 [(617) 573-4177](tel:+16175734177) - ### [Amel Karaa](https://www.mitoaction.org/mito-doctors/amel-karaa/) 185 Cambridge St Suite 5240 Boston, MA 02114 [(617) 726-5737](tel:+16177265737) - ### [Fran Kendall](https://www.mitoaction.org/mito-doctors/fran-kendall/) 1875 Old Alabama Rd Suite 220 Roswell, GA 30076 [(404) 793-7800](tel:+14047937800) Sees Patients Virtually in All 50 States - ### [Mary Koenig](https://www.mitoaction.org/mito-doctors/mary-koenig/) 6410 Fannin St Suite 720 Houston, TX 77030 [(713) 500-7164](tel:+17135007164) - ### [Austin Larson](https://www.mitoaction.org/mito-doctors/austin-larson/) 13123 E 16th Ave B300 Aurora, CO 80045 [(303) 724-2370](tel:+13037242370) - ### [Kumarie Latchman](https://www.mitoaction.org/mito-doctors/kumarie-latchman/) 1601 Northwest 12th Ave Miami, FL 33136 [(305) 243-6006](tel:+13052436006) - ### [Uta Lichter-Konecki](https://www.mitoaction.org/mito-doctors/uta-lichter-konecki/) 4401 Penn Ave Pittsburgh, PA 15224 [(412) 692-7273](tel:+14126927273) - ### [Shawn McCandless](https://www.mitoaction.org/mito-doctors/shawn-mccandless/) 13124 E 16th Ave B300 Aurora, CO 80045 [(303) 724-2371](tel:+13037242371) - ### [Margherita Milone](https://www.mitoaction.org/mito-doctors/margherita-milone/) 200 First St SW Rochester, MN 55905 [(507) 284-1588](tel:+15072841588) - ### [Dmitriy Niyazov](https://www.mitoaction.org/mito-doctors/dmitriy-niyazov/) 1315 Jefferson Hwy New Orleans, LA 70121 [(504) 842-3900](tel:+15048423900) - ### [Sumit Parikh](https://www.mitoaction.org/mito-doctors/sumit-parikh/) 9500 Euclid Ave Cleveland, OH 44195 [(216) 444-5559](tel:+12164445559) - ### [Amit Sachdev](https://www.mitoaction.org/mito-doctors/amit-sachdev/) 804 Service Rd Room A217 East Lansing, MI 48825 [(517) 353-8122](tel:+15173538122) - ### [Russell Saneto](https://www.mitoaction.org/mito-doctors/russell-saneto/) 4800 Sand Point Way NE Seattle, WA 98105 [(206) 987-2078](tel:+12069872078) - ### [Fernando Scaglia](https://www.mitoaction.org/mito-doctors/fernando-scaglia/) 6701 Fannin St Suite 1560 Houston, TX 77030 [(832) 822-4280](tel:+18328224280) - ### [Johan Van Hove](https://www.mitoaction.org/mito-doctors/johan-van-hove/) 13123 E 16th Ave B300 Aurora, CO 80045 [(303) 724-2370](tel:+13037242370) - ### [Melissa Walker](https://www.mitoaction.org/mito-doctors/melissa-walker/) 55 Fruit St Boston, MA 02114-2696 [(617) 724-6400](tel:+16177246400) --- ### [Energy In Action Podcast](https://www.mitoaction.org/education/energy-in-action/) **Published:** October 8, 2020 **Author:** wpengine **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [EDUCATION](https://www.mitoaction.org/education/ "Education") # Energy in Action Podcast Series Our podcast series gives you a glimpse into the lives of families affected by mitochondrial disease and the latest in clinical trials, diagnosis, research, and the advancement of therapies. ![](https://www.mitoaction.org/wp-content/uploads/2023/02/Energy-in-Action-Podcast-Featured-Image-1024x512.jpg) Our podcast series—Energy In Action—consists of conversations with patients, families, researchers, and thought leaders in the mitochondrial disease communities. These podcasts will give you a glimpse into the lives of families affected by mitochondrial disease and the latest in clinical trials, diagnosis, research, and the advancement of therapies. Once each month, join us for our special episode of Parents as Rare to hear from parents affected by a rare disease themself and how they navigate caring for their family and managing their own care. ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Program-Logo-Energy-in-Action-Podcast-1024x269.webp) ### Search Energy in Action Podcasts - [![Energy in Action Podcast Episode 165: Mitoman Takes on American Ninja Warrior](https://www.mitoaction.org/wp-content/uploads/2026/09/Episode-165.png)](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-165-mitoman-takes-on-american-ninja-warrior/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Podcasts](https://www.mitoaction.org/resource_type/type-podcasts/) ###### [Energy in Action Podcast Episode 165: Mitoman Takes on American Ninja Warrior](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-165-mitoman-takes-on-american-ninja-warrior/) September 2, 2026 - [![Energy in Action Podcast Episode 164: The Research Unlocking Mitochondrial DNA](https://www.mitoaction.org/wp-content/uploads/2026/08/Episode-164-2.png)](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-164-the-research-unlocking-mitochondrial-dna/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Podcasts](https://www.mitoaction.org/resource_type/type-podcasts/) ###### [Energy in Action Podcast Episode 164: The Research Unlocking Mitochondrial DNA](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-164-the-research-unlocking-mitochondrial-dna/) August 19, 2026 - [![Energy in Action Podcast Episode 163: Exercise Without Fear: How to Build Stronger Mitochondria Safely](https://www.mitoaction.org/wp-content/uploads/2026/08/Episode-163-1.png)](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-163-exercise-without-fear-how-to-build-stronger-mitochondria-safely-copy/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Podcasts](https://www.mitoaction.org/resource_type/type-podcasts/) ###### [Energy in Action Podcast Episode 163: Exercise Without Fear: How to Build Stronger Mitochondria Safely](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-163-exercise-without-fear-how-to-build-stronger-mitochondria-safely-copy/) August 7, 2026 - [![Energy in Action Podcast Episode 162: Nutrition Advice Mito Patients Need](https://www.mitoaction.org/wp-content/uploads/2026/07/Episode-162-1.png)](https://www.mitoaction.org/resources/action-in-energy-podcast-episode-162-nutrition-advice-mito-patients-need/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Podcasts](https://www.mitoaction.org/resource_type/type-podcasts/) ###### [Energy in Action Podcast Episode 162: Nutrition Advice Mito Patients Need](https://www.mitoaction.org/resources/action-in-energy-podcast-episode-162-nutrition-advice-mito-patients-need/) July 15, 2026 - [![Energy in Action Podcast Episode 161: FAOD Families: Don’t Miss This Free Virtual Conference](https://www.mitoaction.org/wp-content/uploads/2026/06/Episode-161-1.png)](https://www.mitoaction.org/resources/action-in-energy-podcast-episode-161-faod-families-dont-miss-this-free-virtual-conference/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Podcasts](https://www.mitoaction.org/resource_type/type-podcasts/) ###### [Energy in Action Podcast Episode 161: FAOD Families: Don’t Miss This Free Virtual Conference](https://www.mitoaction.org/resources/action-in-energy-podcast-episode-161-faod-families-dont-miss-this-free-virtual-conference/) July 1, 2026 - [![Energy in Action Podcast Episode 160: The Fight That Changed Disability Rights Forever](https://www.mitoaction.org/wp-content/uploads/2026/06/Episode-156.png)](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-160-the-fight-that-changed-disability-rights-forever/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Podcasts](https://www.mitoaction.org/resource_type/type-podcasts/) ###### [Energy in Action Podcast Episode 160: The Fight That Changed Disability Rights Forever](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-160-the-fight-that-changed-disability-rights-forever/) June 17, 2026 - [![Energy in Action Podcast Episode 159: How One FDA Meeting Gave the MELAS Community a Voice](https://www.mitoaction.org/wp-content/uploads/2026/06/Episode-159-3.png)](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-159-how-one-fda-meeting-gave-the-melas-community-a-voice/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Podcasts](https://www.mitoaction.org/resource_type/type-podcasts/) ###### [Energy in Action Podcast Episode 159: How One FDA Meeting Gave the MELAS Community a Voice](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-159-how-one-fda-meeting-gave-the-melas-community-a-voice/) June 3, 2026 - [![Energy in Action Podcast Episode 158: Why Sleep Matters More Than You Think with Mitochondrial Disease](https://www.mitoaction.org/wp-content/uploads/2026/05/Episode-158-1.png)](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-158-why-sleep-matters-more-than-you-think-with-mitochondrial-disease/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Podcasts](https://www.mitoaction.org/resource_type/type-podcasts/) ###### [Energy in Action Podcast Episode 158: Why Sleep Matters More Than You Think with Mitochondrial Disease](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-158-why-sleep-matters-more-than-you-think-with-mitochondrial-disease/) May 26, 2026 - [![Energy in Action Podcast Episode 157: Free Housing for Hospital Visits? The Resource Every Family Should Know](https://www.mitoaction.org/wp-content/uploads/2026/05/Episode-157-1.png)](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-157-housing-for-hospital-visits/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Podcasts](https://www.mitoaction.org/resource_type/type-podcasts/) ###### [Energy in Action Podcast Episode 157: Free Housing for Hospital Visits? The Resource Every Family Should Know](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-157-housing-for-hospital-visits/) May 6, 2026 1[2](?query-0-page=2&action=as_async_request_queue_runner&nonce=bb0088923f)[3](?query-0-page=3&action=as_async_request_queue_runner&nonce=bb0088923f)…[18](?query-0-page=18&action=as_async_request_queue_runner&nonce=bb0088923f) [Next Page](/wp-admin/admin-ajax.php?action=as_async_request_queue_runner&nonce=bb0088923f&query-0-page=2) --- ### [Wondering Wednesdays](https://www.mitoaction.org/education/monthly-expert-series/wondering-wednesdays/) **Published:** March 1, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [EDUCATION](https://www.mitoaction.org/education/ "Education") # Wondering Wednesdays: Ask the Genetic Counselor Wondering Wednesdays: Ask the Genetic Counselor is here to help make the world of genetics to feel more accessible and to help you feel more confident in understanding your care. ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Wondering-Wednesdays-Ask-a-Genetic-Counselor-Woman-saying-hi-in-Zoom-session-1024x683.webp) Genetics can feel like they’re written in a foreign language but you don’t have to figure it out on your own. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to answer questions and help make genetics feel more accessible to everyone. Only the first two episodes of Wondering Wednesdays: Ask the Genetic Counselor were recorded and can be accessed below to give you insight into the role the Genetic Counselor plays on your healthcare team, understanding diagnosis, and your diagnostic reports. Join MitoAction’s monthly series, [Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month](https://www.mitoaction.org/calendar/category/wondering-wednesdays/). Genetics can feel like they’re written in a foreign language but you don’t have to figure it out on your own. Genetic Counselor and Mito Advocate [Devin Shuman](https://www.mitoaction.org/bios/devin-shuman-ms-lcgc/ "Devin Shuman, MS, LCGC") will host these informal non-recorded sessions, to answer questions and help make genetics feel more accessible to everyone. ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Program-Logo-Wondering-Wednesdays.png) ### Search Monthly Expert Series - [![Expert Series: Direct to Consumer Genetic Testing 101](https://www.mitoaction.org/wp-content/uploads/2026/03/April-16-Shuman.png)](https://www.mitoaction.org/resources/expert-series-direct-to-consumer-genetic-testing-101/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Wondering Wednesdays](https://www.mitoaction.org/resource_type/type-wondering-wednesdays/) Devin Shuman, MS, LCGC ###### [Expert Series: Direct to Consumer Genetic Testing 101](https://www.mitoaction.org/resources/expert-series-direct-to-consumer-genetic-testing-101/) March 15, 2026 - [![Episode 1: Wondering Wednesdays: Ask the Genetic Counselor (January 25, 2023)](https://www.mitoaction.org/wp-content/uploads/2023/02/31.png)](https://www.mitoaction.org/resources/wondering-wednesdays-ask-the-genetic-counselor/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Expert Series](https://www.mitoaction.org/resource_type/type-expert-series/), [Wondering Wednesdays](https://www.mitoaction.org/resource_type/type-wondering-wednesdays/) Devin Shuman, MS, LCGC ###### [Episode 1: Wondering Wednesdays: Ask the Genetic Counselor (January 25, 2023)](https://www.mitoaction.org/resources/wondering-wednesdays-ask-the-genetic-counselor/) February 25, 2023 - [![Episode 2: Wondering Wednesdays: Ask the Genetic Counselor (February 22, 2023)](https://www.mitoaction.org/wp-content/uploads/2023/02/32.png)](https://www.mitoaction.org/resources/wondering-wednesdays-ask-the-genetic-counselor-copy/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Expert Series](https://www.mitoaction.org/resource_type/type-expert-series/), [Wondering Wednesdays](https://www.mitoaction.org/resource_type/type-wondering-wednesdays/) Devin Shuman, MS, LCGC ###### [Episode 2: Wondering Wednesdays: Ask the Genetic Counselor (February 22, 2023)](https://www.mitoaction.org/resources/wondering-wednesdays-ask-the-genetic-counselor-copy/) February 22, 2023 ### **Register for an Upcoming Wondering Wednesday** Wondering Wednesdays are held every 4th Wednesday of the month, and are free to attend. Register on Zoom to attend the next session. [Register Now](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG) --- ### [Monthly Expert Series](https://www.mitoaction.org/education/monthly-expert-series/) **Published:** January 25, 2022 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [EDUCATION](https://www.mitoaction.org/education/ "Education") # Monthly Expert Series Our monthly educational webinars feature guest speakers addressing topics important to the mito community, giving patients and families unprecedented access to leading clinical experts. ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Expert-Series-Presenter-in-front-of-a-group-in-a-meeting-room-1024x683.webp) More than 125 presentations have been recorded and posted online, making these presentations available to you at your convenience. The [Mito Monthly Expert Series](https://www.mitoaction.org/calendar/category/monthly-expert-series/) are generally held the first Friday of each month at 12:00 p.m. Eastern Standard Time (EST). ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Program-Logo-Monthly-Expert-Series-1024x269.webp) ### Search Monthly Expert Series - [![Expert Series: NARP: Understanding the Spectrum of Disease](https://www.mitoaction.org/wp-content/uploads/2026/08/Sep-11-1.png)](https://www.mitoaction.org/resources/expert-series-narp-understanding-the-spectrum-of-disease/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Expert Series](https://www.mitoaction.org/resource_type/type-expert-series/) ###### [Expert Series: NARP: Understanding the Spectrum of Disease](https://www.mitoaction.org/resources/expert-series-narp-understanding-the-spectrum-of-disease/) August 21, 2026 - [![Expert Series: Understanding the FALCON Study: Investigating a Potential Therapy for Mitochondrial Disease](https://www.mitoaction.org/wp-content/uploads/2026/08/Aug-14-3.png)](https://www.mitoaction.org/resources/expert-series-understanding-the-falcon-study-investigating-a-potential-therapy-for-mitochondrial-disease/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Expert Series](https://www.mitoaction.org/resource_type/type-expert-series/) Mary Kay Koenig, MD ###### [Expert Series: Understanding the FALCON Study: Investigating a Potential Therapy for Mitochondrial Disease](https://www.mitoaction.org/resources/expert-series-understanding-the-falcon-study-investigating-a-potential-therapy-for-mitochondrial-disease/) August 17, 2026 - [![Expert Series: Understanding the potential of a “CPK Meter”](https://www.mitoaction.org/wp-content/uploads/2026/05/June-18-IVDS-1.png)](https://www.mitoaction.org/resources/expert-series-understanding-the-potential-of-a-cpk-meter/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Expert Series](https://www.mitoaction.org/resource_type/type-expert-series/), [FAOD Expert Series](https://www.mitoaction.org/resource_type/type-faod-expert-series/) Robert Harper, IVDS, Bioscience Founder and CEO, Pranav Ponnaluri, MS, MBA ###### [Expert Series: Understanding the potential of a “CPK Meter”](https://www.mitoaction.org/resources/expert-series-understanding-the-potential-of-a-cpk-meter/) May 26, 2026 - [![Expert Series: Simplifying the Mitochondrial Medication Experience Through Compounded Mito Cocktails](https://www.mitoaction.org/wp-content/uploads/2026/05/ES-June-5-Chemistry-RX.png)](https://www.mitoaction.org/resources/expert-series-simplifying-the-mitochondrial-medication-experience-through-compounded-mito-cocktails/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Expert Series](https://www.mitoaction.org/resource_type/type-expert-series/) Jonathan Mordis, CEO, Houry Lepedjian, Bryan R. Cohen, BSN, RN ###### [Expert Series: Simplifying the Mitochondrial Medication Experience Through Compounded Mito Cocktails](https://www.mitoaction.org/resources/expert-series-simplifying-the-mitochondrial-medication-experience-through-compounded-mito-cocktails/) May 12, 2026 - [![Expert Series: Lactic Acid & Mitochondrial Disease: When there’s too much of a good thing](https://www.mitoaction.org/wp-content/uploads/2026/04/May-1-Ganetzky.png)](https://www.mitoaction.org/resources/expert-series-lactic-acid-mitochondrial-disease-when-theres-too-much-of-a-good-thing/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Expert Series](https://www.mitoaction.org/resource_type/type-expert-series/) Rebecca Ganetzky, MD ###### [Expert Series: Lactic Acid & Mitochondrial Disease: When there’s too much of a good thing](https://www.mitoaction.org/resources/expert-series-lactic-acid-mitochondrial-disease-when-theres-too-much-of-a-good-thing/) April 22, 2026 - [![Expert Series: Eat Smart, Power Strong: Your Mitochondrial Nutrition Grade](https://www.mitoaction.org/wp-content/uploads/2026/03/April-3-Dabari-1-1.png)](https://www.mitoaction.org/resources/expert-series-eat-smart-power-strong-your-mitochondrial-nutrition-grade/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Expert Series](https://www.mitoaction.org/resource_type/type-expert-series/) Donna DiVito, MS, RDN, CPHQ, CLSSGB ###### [Expert Series: Eat Smart, Power Strong: Your Mitochondrial Nutrition Grade](https://www.mitoaction.org/resources/expert-series-eat-smart-power-strong-your-mitochondrial-nutrition-grade/) March 17, 2026 - [![Expert Series: An overview of gastrointestinal motility and mitochondrial function](https://www.mitoaction.org/wp-content/uploads/2026/03/April-3-Dabari-1.png)](https://www.mitoaction.org/resources/expert-series-an-overview-of-gastrointestinal-motility-and-mitochondrial-function/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Expert Series](https://www.mitoaction.org/resource_type/type-expert-series/) Anil Darbari, MBBS, MD, MBA ###### [Expert Series: An overview of gastrointestinal motility and mitochondrial function](https://www.mitoaction.org/resources/expert-series-an-overview-of-gastrointestinal-motility-and-mitochondrial-function/) March 11, 2026 - [![Expert Series: Understanding the Current Landscape of Insurance Coverage for Rare Diseases](https://www.mitoaction.org/wp-content/uploads/2026/03/March-20-Maynard-2.png)](https://www.mitoaction.org/resources/expert-series-understanding-the-current-landscape-of-insurance-coverage-for-rare-diseases/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Expert Series](https://www.mitoaction.org/resource_type/type-expert-series/) Kelly Maynard ###### [Expert Series: Understanding the Current Landscape of Insurance Coverage for Rare Diseases](https://www.mitoaction.org/resources/expert-series-understanding-the-current-landscape-of-insurance-coverage-for-rare-diseases/) March 6, 2026 - [![Expert Series: Neuropathy and Disorders of Mitochondrial Dysfunction](https://www.mitoaction.org/wp-content/uploads/2026/02/March-6-Goldstein.png)](https://www.mitoaction.org/resources/expert-series-neuropathy-and-disorders-of-mitochondrial-dysfunction/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Expert Series](https://www.mitoaction.org/resource_type/type-expert-series/), [FAOD Expert Series](https://www.mitoaction.org/resource_type/type-faod-expert-series/) Amy Goldstein, MD ###### [Expert Series: Neuropathy and Disorders of Mitochondrial Dysfunction](https://www.mitoaction.org/resources/expert-series-neuropathy-and-disorders-of-mitochondrial-dysfunction/) February 20, 2026 1[2](?query-0-page=2&action=as_async_request_queue_runner&nonce=bb0088923f)[3](?query-0-page=3&action=as_async_request_queue_runner&nonce=bb0088923f)…[27](?query-0-page=27&action=as_async_request_queue_runner&nonce=bb0088923f) [Next Page](/wp-admin/admin-ajax.php?action=as_async_request_queue_runner&nonce=bb0088923f&query-0-page=2) ### **Register & Attend an Expert Series Presentation** MitoAction’s Expert Series is help on the first Friday of every month at noon EST. It’s free to attend! [View Upcoming Expert Series Presentations](https://www.mitoaction.org/calendar/category/monthly-expert-series/) --- ### [FAOD Experts Series](https://www.mitoaction.org/fatty-acid-oxidation-disorders/faod-experts-series/) **Published:** December 21, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [EDUCATION](https://www.mitoaction.org/education/ "Education") # FAOD Expert Series Fatty Acid Oxidation Disorders (FAODs) are a group of rare, metabolic disorders in which the body cannot break down fat into usable energy. ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Expert-Series-Presenter-in-front-of-a-group-in-a-meeting-room-1024x683.webp) More than 20 presentations have been recorded and posted online, making these presentations available to you at your convenience. View upcoming [FAOD Expert Series](https://www.mitoaction.org/calendar/category/faod-monthly-expert-series/) on our events calendar. ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Program-Logo-Monthly-Expert-Series-1024x269.webp) ### Search FAOD Expert Series - [![Expert Series: Understanding the potential of a “CPK Meter”](https://www.mitoaction.org/wp-content/uploads/2026/05/June-18-IVDS-1.png)](https://www.mitoaction.org/resources/expert-series-understanding-the-potential-of-a-cpk-meter/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Expert Series](https://www.mitoaction.org/resource_type/type-expert-series/), [FAOD Expert Series](https://www.mitoaction.org/resource_type/type-faod-expert-series/) Robert Harper, IVDS, Bioscience Founder and CEO, Pranav Ponnaluri, MS, MBA ###### [Expert Series: Understanding the potential of a “CPK Meter”](https://www.mitoaction.org/resources/expert-series-understanding-the-potential-of-a-cpk-meter/) May 26, 2026 - [![Expert Series: Neuropathy and Disorders of Mitochondrial Dysfunction](https://www.mitoaction.org/wp-content/uploads/2026/02/March-6-Goldstein.png)](https://www.mitoaction.org/resources/expert-series-neuropathy-and-disorders-of-mitochondrial-dysfunction/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Expert Series](https://www.mitoaction.org/resource_type/type-expert-series/), [FAOD Expert Series](https://www.mitoaction.org/resource_type/type-faod-expert-series/) Amy Goldstein, MD ###### [Expert Series: Neuropathy and Disorders of Mitochondrial Dysfunction](https://www.mitoaction.org/resources/expert-series-neuropathy-and-disorders-of-mitochondrial-dysfunction/) February 20, 2026 - [![Expert Series: Taking the risk out of MCAD deficiency: clinical trials are the path to treatment](https://www.mitoaction.org/wp-content/uploads/2026/01/Dec-16-Vockley.png)](https://www.mitoaction.org/resources/expert-series-taking-the-risk-out-of-mcad-deficiency/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [FAOD Expert Series](https://www.mitoaction.org/resource_type/type-faod-expert-series/) Jerry Vockley, MD, PhD, FACMG ###### [Expert Series: Taking the risk out of MCAD deficiency: clinical trials are the path to treatment](https://www.mitoaction.org/resources/expert-series-taking-the-risk-out-of-mcad-deficiency/) January 5, 2026 - [![Expert Series: Serial Casting and Toe Walking](https://www.mitoaction.org/wp-content/uploads/2025/04/May-15-Pamela-Tucker.png)](https://www.mitoaction.org/resources/expert-series-mito-serial-casting-and-toe-walking/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Expert Series](https://www.mitoaction.org/resource_type/type-expert-series/), [FAOD Expert Series](https://www.mitoaction.org/resource_type/type-faod-expert-series/) Pamela Tucker, DPT, PT ###### [Expert Series: Serial Casting and Toe Walking](https://www.mitoaction.org/resources/expert-series-mito-serial-casting-and-toe-walking/) April 25, 2025 - [![Expert Series: Updates on Cardiomyopathy: Diagnosis and Management in FAOD](https://www.mitoaction.org/wp-content/uploads/2025/04/April-30-Chatfield.png)](https://www.mitoaction.org/resources/expert-series-mito-cardiomyopathy/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [FAOD Expert Series](https://www.mitoaction.org/resource_type/type-faod-expert-series/) Kathryn Chatfield, MD ###### [Expert Series: Updates on Cardiomyopathy: Diagnosis and Management in FAOD](https://www.mitoaction.org/resources/expert-series-mito-cardiomyopathy/) April 11, 2025 - [![Expert Series: All about Ketones](https://www.mitoaction.org/wp-content/uploads/2025/03/ES-March-20-Gillingham.png)](https://www.mitoaction.org/resources/expert-series-mito-all-about-ketones/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [FAOD Expert Series](https://www.mitoaction.org/resource_type/type-faod-expert-series/) Melanie Gillingham, PhD, RD, LD ###### [Expert Series: All about Ketones](https://www.mitoaction.org/resources/expert-series-mito-all-about-ketones/) March 7, 2025 - [![Expert Series: Understanding the Pediatrician’s Role in the “Growing Up Years”](https://www.mitoaction.org/wp-content/uploads/2025/02/ES-Feb-20-Nale.png)](https://www.mitoaction.org/resources/expert-series-growing-up-years/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Expert Series](https://www.mitoaction.org/resource_type/type-expert-series/), [FAOD Expert Series](https://www.mitoaction.org/resource_type/type-faod-expert-series/) Daniel Nale, MD ###### [Expert Series: Understanding the Pediatrician’s Role in the “Growing Up Years”](https://www.mitoaction.org/resources/expert-series-growing-up-years/) February 6, 2025 - [![Expert Series: FAOD For Beginners](https://www.mitoaction.org/wp-content/uploads/2024/02/March-6-Arnold.png)](https://www.mitoaction.org/resources/expert-series-faod-for-beginners/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Expert Series](https://www.mitoaction.org/resource_type/type-expert-series/), [FAOD Expert Series](https://www.mitoaction.org/resource_type/type-faod-expert-series/) Georgianne Arnold, MD, Phd ###### [Expert Series: FAOD For Beginners](https://www.mitoaction.org/resources/expert-series-faod-for-beginners/) February 23, 2024 - [![Expert Series: Ceramides: The Unmasked Drivers of VLCADD-Induced Heart Failure](https://www.mitoaction.org/wp-content/uploads/2023/09/December-6-1-1.png)](https://www.mitoaction.org/resources/expert-series-mito-ceramides-vlcadd-induced-heart-failure/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Mito-Action-Logo.png) [Expert Series](https://www.mitoaction.org/resource_type/type-expert-series/), [FAOD Expert Series](https://www.mitoaction.org/resource_type/type-faod-expert-series/) Marie Norris, MS, RDN, CD, CNSC, PhD ###### [Expert Series: Ceramides: The Unmasked Drivers of VLCADD-Induced Heart Failure](https://www.mitoaction.org/resources/expert-series-mito-ceramides-vlcadd-induced-heart-failure/) November 15, 2023 1[2](?query-0-page=2&action=as_async_request_queue_runner&nonce=bb0088923f)[3](?query-0-page=3&action=as_async_request_queue_runner&nonce=bb0088923f) [Next Page](/wp-admin/admin-ajax.php?action=as_async_request_queue_runner&nonce=bb0088923f&query-0-page=2) ### **Register & Attend an Expert Series Presentation** MitoAction’s Expert Series is help on the first Friday of every month at noon EST. It’s free to attend! [View Upcoming Expert Series Presentations](https://www.mitoaction.org/calendar/category/monthly-expert-series/) --- ### [Support Calls](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Patient & Family Support](https://www.mitoaction.org/programs-support/patient-and-family-support/ "Education") # Support Calls Our support calls create a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in to share their experiences, ask a question, and offer and receive individualized support. ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Mens-Support-Call-Man-meeting-with-others-on-Zoom-1024x683.webp) Through our many support call avenues, MitoAction is committed to providing a safe and supportive environment for you to share your experiences and discuss your personal victories and challenges. Whether you’re a patient, parent, caregiver, friend, or love one these support enviornments are for you! Check out our various groups below to see how you can join in! ![](https://www.mitoaction.org/wp-content/uploads/2023/03/Weekly-Support-Call-Logo-1024x269.png) [![](https://www.mitoaction.org/wp-content/uploads/2024/07/Weekly-Support-Calls-Cover-Image-1024x1024.png)](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/weekly-support-calls/)#### Weekly Support Calls Join MitoAction and other patients, caregivers, and loved ones, who are on their diagnostic journey or are already diagnosed with Mito, for our confidential weekly support calls. [Learn More](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/weekly-support-calls/) ![](https://www.mitoaction.org/wp-content/uploads/2026/01/FAOD-evening-website-square.png)#### FAOD Support Calls Join other families and patients affected by fatty acid oxidation disorders. Share stories, experiences, and give and receive support! Everyone is welcome! [Learn More](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/faod-support-calls/) [![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Support-Calls-Mens-Support-Calls-1024x1024.webp)](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/mens-support-calls/)#### Men’s Support Calls Men impacted by mitochondrial disease face a unique set of circumstances. Join us for a monthly support call just for men in the mitochondrial disease community! [Learn More](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/mens-support-calls/) [![](https://www.mitoaction.org/wp-content/uploads/2023/08/CPEO-ME-1024x1024.png)](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/cpeo-me-support-call/)#### CPEO & Me Support Call CPEO & Me Support Calls are a special place reserved for individuals impacted by CPEO to share about their experiences and connect with others on a similar journey. [Learn More](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/cpeo-me-support-call/) [![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Support-Calls-Our-Space-1024x1024.webp)](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/our-space/)#### Our Space: A Space for Young Adults Join young adults with Mito and FAODs to connect, network, and hangout! These meetings will occur the third Tuesday of the month at 8:30pm (EST)! [Learn More](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/our-space/) [![](https://www.mitoaction.org/wp-content/uploads/2025/12/POLG-Support-Call-Website-graphic-1024x1024.png)](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/polg-support-calls/)#### POLG Support Call Join MitoAction once a month for our virtual POLG Support Call. The POLG call occurs every second Thursday of the month at 11am (EST)! [Learn More](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/polg-support-calls/) [![](https://www.mitoaction.org/wp-content/uploads/2026/02/1.png)](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/melas-support-call/)#### MELAS Support Call MELAS Support Calls are a welcoming space for patients, caregivers, and family members to connect with others on their journey with MELAS. Meetings are held on the second Tuesday of the month at 12pm (EST). [Learn More](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/melas-support-call/) --- ### [Social Media Graphics](https://www.mitoaction.org/join-the-cause/raise-your-voice/awareness-week/mito-facts/) **Published:** September 11, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Download this year’s Mitochondrial Disease Awareness Week graphics and share on social media to help us raise awareness! Right click on each image to save to your computer, or [download a ZIP of all the graphics.](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW26-SM-Posts-Copy-2.zip) This year, most key messages are made up of multiple images, which you should post as a gallery or slideshow. ## Start of Mito Week Right click on the image to save and download or [download as a ZIP](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Save-the-Date_01-2.png). ![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Save-the-Date_01-3-819x1024.png) ## Mitochondrial Disease Affects People Everywhere. Right click on the image to save and download or [download as a ZIP.](https://www.mitoaction.org/wp-content/uploads/2026/08/Message1.zip) ![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Key-Message-1_01-1.png)![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Key-Message-1_02-1-819x1024.png)![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Key-Message-1_03-1-819x1024.png)![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Key-Message-1_04-2-819x1024.png)![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Key-Message-1_05-1-819x1024.png) ## Awareness Leads to Understanding and Change. Right click on the image to save and download or [download as](https://www.mitoaction.org/wp-content/uploads/2025/08/Bridging-the-Gap-Between-Science-and-Symptoms.zip)[ ](https://www.mitoaction.org/wp-content/uploads/2026/08/Message2.zip)[a ZIP](https://www.mitoaction.org/wp-content/uploads/2025/08/Bridging-the-Gap-Between-Science-and-Symptoms.zip). ![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Key-Message-2_01-2-819x1024.png)![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Key-Message-2_02-4-819x1024.png)![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Key-Message-2_03-2-819x1024.png)![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Key-Message-2_04-2-819x1024.png) ## Every Voice Helps Put Mito on the Map Right click on the image to save and download or [download as a ](https://www.mitoaction.org/wp-content/uploads/2026/08/Message3.zip)[ZIP](https://www.mitoaction.org/wp-content/uploads/2026/08/Message3-1.zip). ![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Key-Message-3_01-2.png)![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Key-Message-3_02-2.png)![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Key-Message-3_03-2.png)![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Key-Message-3_04-2.png) ## Progress Comes Through Collaboration Right click on the image to save and download or [download](https://www.mitoaction.org/wp-content/uploads/2026/08/Message4-2.zip)[ as a ZIP.](https://www.mitoaction.org/wp-content/uploads/2026/08/Message4.zip) ![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Key-Message-4_01-2.png)![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Key-Message-4_02-2.png)![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Key-Message-4_03-3.png)![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Key-Message-4_04-3.png) ## This is a Global Movement Right click on the image to save and download or [download as a ZIP.](https://www.mitoaction.org/wp-content/uploads/2026/08/Message5.zip) ![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Key-Message-5_01-2.png)![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Key-Message-5_02-2.png)![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Key-Message-5_03-2.png)![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Key-Message-5_04-2.png) ## The Future of Mito is Being Written Now Right click on the image to save and download or [download as a ZIP.](https://www.mitoaction.org/wp-content/uploads/2026/08/Message6-1.zip) ![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Key-Message-6_01-1-819x1024.png)![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Key-Message-6_02-1-819x1024.png)![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Key-Message-6_03-1-819x1024.png)![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Key-Message-6_04-1-819x1024.png)![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Key-Message-6_05-1-819x1024.png) ## LHON Awareness Day Right click on the image to save and download or [download as a ZIP.](https://www.mitoaction.org/wp-content/uploads/2026/08/LHON.zip) ![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_LHON_Save-the-Date-2-819x1024.png)![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_LHON_Save-the-Date-3-819x1024.png)![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_LHON-5-819x1024.png) ## Light Up for Mito Right click on the image to save and download or [download as a ZIP.](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Light-Up-for-Mito-2.png) ![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Light-Up-for-Mito-3-819x1024.png)![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Light-Up_Save-the-Date-819x1024.png) ## WMDW Starts Today! Right click on the image to save and download or [download as a ZIP.](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW.png-1.zip) ![](https://www.mitoaction.org/wp-content/uploads/2026/08/WMDW2026_Starts-Today-2-1-819x1024.png) ## Putting Mito on the Map Right click on the image to save and download or [download as a ZIP.](https://www.mitoaction.org/wp-content/uploads/2026/08/MitoOnTheMap.zip) ![](https://www.mitoaction.org/wp-content/uploads/2026/08/53-1-819x1024.png)![](https://www.mitoaction.org/wp-content/uploads/2026/08/54-819x1024.png)![](https://www.mitoaction.org/wp-content/uploads/2026/08/LinkedIn_post-2-1-819x1024.png)![](https://www.mitoaction.org/wp-content/uploads/2026/08/LinkedIn_post-1024x1024.png) --- ### [Order Your Green Lights](https://www.mitoaction.org/join-the-cause/raise-your-voice/awareness-week/order-your-green-lights/) **Published:** August 12, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2024/08/Light-Up-Green-for-Mitochondrial-Disease-Awareness-Week-1-1024x575.jpg)Light up your home or porch this week with green light bulbs! It’s a great way to show your support and get a conversation about mito started with your neighbors and others in your community. This year, we’re making it even easier by offering green LED light bulbs right here on our website. Just use the form to the right to order a set of two bulbs for your home. [Print and hand out these flyers](https://www.mitoaction.org/wp-content/uploads/2026/08/LIGHTING-UP-FOR-MITO-flyer.png "Print and hand out these flyers") to help get the message out. #### Order Your Green Light Bulbs Each package contains two (2) green LED bulbs for a $15 donation. Use them on your porch or in your home to show your support! Please order by September 6th to ensure you get your lights on time! "\*" indicates required fields Step 1 of 3 33% NameThis field is for validation purposes and should be left unchanged. First Name\* Last Name\* Email\* Phone Next Shipping Address Street Address Address Line 2 City AlabamaAlaskaAmerican SamoaArizonaArkansasCaliforniaColoradoConnecticutDelawareDistrict of ColumbiaFloridaGeorgiaGuamHawaiiIdahoIllinoisIndianaIowaKansasKentuckyLouisianaMaineMarylandMassachusettsMichiganMinnesotaMississippiMissouriMontanaNebraskaNevadaNew HampshireNew JerseyNew MexicoNew YorkNorth CarolinaNorth DakotaNorthern Mariana IslandsOhioOklahomaOregonPennsylvaniaPuerto RicoRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUtahU.S. Virgin IslandsVermontVirginiaWashingtonWest VirginiaWisconsinWyomingArmed Forces AmericasArmed Forces EuropeArmed Forces Pacific State ZIP Code Billing Address Street Address Address Line 2 City AlabamaAlaskaAmerican SamoaArizonaArkansasCaliforniaColoradoConnecticutDelawareDistrict of ColumbiaFloridaGeorgiaGuamHawaiiIdahoIllinoisIndianaIowaKansasKentuckyLouisianaMaineMarylandMassachusettsMichiganMinnesotaMississippiMissouriMontanaNebraskaNevadaNew HampshireNew JerseyNew MexicoNew YorkNorth CarolinaNorth DakotaNorthern Mariana IslandsOhioOklahomaOregonPennsylvaniaPuerto RicoRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUtahU.S. Virgin IslandsVermontVirginiaWashingtonWest VirginiaWisconsinWyomingArmed Forces AmericasArmed Forces EuropeArmed Forces Pacific State ZIP Code Previous Next Green Light Bulbs\*Each pack contains 2 green LED light bulbs. Price: Number of Bulb Packs\*Each pack contains 2 green LED light bulbs. Additional Donation Amount Total Donation Credit CardCredit Card American Express Discover MasterCard Visa Supported Credit Cards: American Express, Discover, MasterCard, Visa Card Number Expiration Date Security Code Cardholder Name Would you like to sign up for our mailing list?Mito NewslettersFAOD NewslettersBoth Mito & FAOD Newsletters CAPTCHA Previous Order Bulbs --- ### [Energy Walk - Perris, CA](https://www.mitoaction.org/events/energywalk/energy-walk-perris-ca/) **Published:** May 8, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Energy Walks](https://www.mitoaction.org/events/energywalk/ "Energy Walk") # MitoAction Energy Walk — Perris, CA Join us to raise awareness and funds for mito—one step at a time! ![](https://www.mitoaction.org/wp-content/uploads/2025/06/Screenshot-2024-12-10-at-5.43.51 PM-866x1024.png) ## Saturday, November 14, 2026 **Foss Park** 138 N. Perris Boulevard Perris, CA 92570 USA Get ready to lace up your sneakers and join us for a day of camaraderie, inspiration, and community spirit at the newest addition to MitoAction’s Energy Walk series: Perris, CA! Hosted by Griselda Macario, this event is not just about crossing the finish line, but about making a difference in the lives of those affected by mitochondrial disease. Whether you’re a seasoned runner, a casual walker, or simply looking for a day of fun-filled activities, there’s something for everyone at Energy Walk Perris. Join us as we stride towards a brighter future, one step at a time. [Register Now](https://p2p.onecause.com/perrisenergywalk) ### Meet Griselda Macario ![](https://www.mitoaction.org/wp-content/uploads/2024/05/MitoAction-Energy-Walk-Riverside-Griselda-Macario-01-IMG_7218-683x1024.jpg)My name is Griselda Macario, and I am reaching out to share my story, raise awareness about mitochondrial disease, particularly TK2d, an ultra-rare genetic disorder that has deeply impacted my life, and ask for your partnership in the 2024 MitoAction Energy Walk Riverside. I was born in California in 1993. In 2019, at the age of 26, I was diagnosed with TK2d. Although there is no cure for this disease, finally understanding the cause of my symptoms was a significant relief. TK2d affects all muscles in the body. I have been gradually losing strength in my arms, legs, neck, and torso, as well as my facial, chest, and esophageal muscles. Despite these challenges, I maintain a positive outlook and find ways to adapt to continue enjoying life. The support and love from my husband, daughter, family, and friends motivate me to share my journey with TK2d. Growing up, I was never the athletic type. I struggled with running, often finishing last in school races, and found physical activities like pull-ups, sit-ups, and push-ups incredibly challenging. Despite my academic success as a straight-A student, I knew something was off when I couldn’t shoot a basketball or pitch a volleyball like my peers. In high school, my physical struggles persisted, and I noticed increasing difficulty with everyday activities like climbing stairs or boarding the school bus. During college, my strength continued to decline, though it wasn’t as noticeable as I managed to maintain a normal daily routine. Occasionally, my legs would give out without warning, leading to embarrassing falls. Reflecting on these experiences now, everything makes sense. I enjoyed dressing up, wearing heels, and dancing. However, around ages 20-21, I began to struggle with these activities. Wearing heels became difficult, and walking or climbing stairs in them was no longer easy. Dancing all night turned into getting worn out and out of breath after just a few songs. My arm strength also diminished. Despite voicing my concerns to my primary care doctors, initial tests for thyroid issues and rheumatoid arthritis came back normal. My weakness was initially attributed to a lack of exercise despite my busy school and work schedule. My husband even bought gym equipment for me, but the muscle weakness persisted. In 2018, at the beginning of my pregnancy, I raised my concerns with my OBGYN. A quick physical exam confirmed that something was indeed wrong, marking the start of my diagnostic journey. I transferred my care and quickly saw a neurologist, a rheumatologist, and a geneticist. Throughout my pregnancy, I underwent numerous tests to find an answer. Conditions like Muscular Dystrophy, Myositis, and Lupus were ruled out. A muscle biopsy revealed tissue necrosis, leading to genetic testing. Despite the muscle weakness, I had a successful delivery and welcomed a healthy baby girl. My CPK levels continued to rise, and treatments with methotrexate and prednisone were ineffective. IVIG therapy was the next option, but before starting it, the genetic test results arrived, confirming TK2d. This diagnosis brought mixed feelings: relief in knowing it wasn’t all in my head, but frustration due to the limited information on TK2d. ![](https://www.mitoaction.org/wp-content/uploads/2024/05/MitoAction-Energy-Walk-Riverside-Griselda-Macario-02-IMG_7218-1024x512.jpg) I am hosting this walk to raise awareness about mitochondrial disease. Although TK2d is an ultra-rare genetic condition, there are several types of mitochondrial diseases. Increasing awareness can help medical professionals look beyond the more common diseases and understand the visible and invisible struggles faced by individuals like me. Funding for further research and support is crucial for the patient community, who fight daily in hopes of treatment, improved care, and a better quality of life. Thank you for your time and support. Sincerely, *Griselda Macario* ## Thank You Sponsors and Donors! #### Platinum Sponsor ![](https://www.mitoaction.org/wp-content/uploads/2026/08/jpg_UCB_LOGO_TAG_C_RGB_600150-1024x193.png) --- ### [Energy Walk - Alvin, TX](https://www.mitoaction.org/events/energywalk/energy-walk-alvin-tx/) **Published:** April 8, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Energy Walks](https://www.mitoaction.org/events/energywalk/ "Energy Walk") # MitoAction Energy Walk — Alvin, TX Join us to raise awareness and funds for mito—one step at a time! ![](https://www.mitoaction.org/wp-content/uploads/2023/02/Matthew-Hearty-Camper-Events-Featured-Image-Boston-Energy-Walk-1024x683.jpg) ## Saturday, August 15, 2026 **Living Stones Church** Victory Ln #1407 Alvin, TX 77511 Gather your team and get ready to go for a walk while raising awareness for mitochondrial disease! Whether you walk as an individual, create a team or volunteer, you’re making a difference in the lives of patients and families who rely on us. Your fundraising helps MitoAction change the future of health for every mito patient, here and around the world. Whether you walk as an individual, create a team, or volunteer, you’re making a difference in the lives of patients and families who rely upon us. This family event offers support, friendship, and fun for everyone! [Register Now](https://p2p.onecause.com/alvintexasenergywalk) **Schedule of Events** **7:30 am –** Registration **8:30 am –** Welcome and Opening Ceremony **8:45 am –** Kid’s Fun Run Begins **9:00 am –** Walk/Run Begins **10:30 am to 12:00 pm –** Awards, refreshments, and FUN! ## **Honoring Steven’s Legacy** ![Energy Walk Texas – Steven's Story](https://www.mitoaction.org/wp-content/uploads/2026/04/Energy-Walk-Texas-–-Stevens-Story-1024x858.webp) Steven’s story is one of quiet strength, deep love, and a resilience far beyond his ten short months. From the very beginning, his journey was marked by complexity, born with agenesis of the corpus callosum and later diagnosed with Leigh syndrome caused by a rare EARS2 gene mutation. His days were often filled with hospital stays, medical interventions, and challenges that no child should have to endure. And yet, through it all, Steven’s presence brought a sense of calm and meaning to those around him. Those who cared for him saw something special. His nurses affectionately called him “Mr. President”, a reflection not only of his name, Steven Cole Swango, but of the quiet dignity he carried. In the midst of monitors, treatments, and uncertainty, there were also moments of tenderness, being held close, the softness of his coos, and the deep connection he shared with his family. These are the moments Miranda holds onto, the ones that defined who Steven truly was. On June 25, 2025, Steven passed peacefully in his mother’s arms, surrounded by love. While his time here was far too brief, his impact is lasting and profound. Today, Steven’s legacy lives on through action. What began as heartbreak has become purpose. Miranda and her family now honor him by bringing people together, to raise awareness, to support other families walking similar paths, and to push forward hope for better understanding, earlier diagnoses, and meaningful treatments for mitochondrial disease. Each step taken in Steven’s name is a reminder: his life mattered, his story matters, and through this community, his light continues to shine. ## Thank You Sponsors and Donors! #### Emerald Sponsor #### Platinum Sponsor #### Gold Sponsor #### Silver Sponsor ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Chocolate-Bayou2.png) #### In-Kind Donations --- ### [MitoAction Energy Walk](https://www.mitoaction.org/events/energywalk/) **Published:** August 27, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") #### Rochester, NY **RESCHEDULED** New Date: **Sunday, September 27, 2026** Basil Marella Park 975 English Rd Rochester, NY 14626 [Learn More](https://www.mitoaction.org/events/energywalk/energywalkrochester/) [Register Now](https://p2p.onecause.com/rochesterenergywalk) #### Alvin, TX **Saturday, August 15, 2026** Living Stones Church Victory Ln #1407 Alvin, TX 77511 [Learn More](https://www.mitoaction.org/events/energywalk/energy-walk-alvin-tx/) [Register Now](https://p2p.onecause.com/alvintexasenergywalk) #### Tallahassee, FL **Saturday, September 19, 2026** Alfred B. Mclay Gardens State Park 3540 Thomasville Rd Tallahassee, FL 32309 [Learn More](https://www.mitoaction.org/events/energywalk/energy-walk-tallahassee-fl/) [Register Now](https://p2p.onecause.com/tallahasseeenergywalk) #### Boston, MA **Saturday, September 26, 2026** UMass Boston 220 William T Morrissey Blvd Boston, MA 02125 [Learn More](https://www.mitoaction.org/events/energywalk/energywalkboston/) [Register Now](https://p2p.onecause.com/bostonenergywalk) #### Syracuse, NY **Sunday, September 27, 2026** Green Lakes State Park 7900 Green Lakes Rd Fayetteville, NY 13066 [Learn More](https://www.mitoaction.org/events/energywalk/energywalksyracuse/) [Register Now](https://p2p.onecause.com/syracuseenergywalk) #### Perris, CA **Saturday, November 14, 2026** Foss Park 138 N. Perris Blvd Perris, CA 92570 [Learn More](https://www.mitoaction.org/events/energywalk/energy-walk-perris-ca/) [Register Now](https://p2p.onecause.com/perrisenergywalk) # MitoAction Energy Walk MitoAction Energy Walks have raised over $1.2 million for mito patients and families! Join us at a location near you, or host an event in your community! ![](https://www.mitoaction.org/wp-content/uploads/2023/02/Matthew-Hearty-Camper-Events-Featured-Image-Boston-Energy-Walk-1024x683.jpg)Since its inception, the MitoAction Energy Walk has transformed the lives of families impacted by mitochondrial disease. Through one-on-one support, education, advocacy, weekly support groups, and more, we support the entire family throughout their journey. Our programs provide a lifeline for families and relief from the constant day-to-day challenges and isolation that are felt as a result of mitochondrial disease. We want all our families to know that they are not alone on this journey and that we are here every step of the way to guide and uplift them. The MitoAction Energy Walks play an important role in the impactful programs and services we provide. To date, the Energy Walks have raised over $1.2M towards improving the lives of families affected by mitochondrial disease. ## 2025 Energy Walk Photos [![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-362-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-362-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-640-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-640-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-12-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-12-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-67-683x1024.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-67-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-72-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-72-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-713-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-713-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-30-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-30-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-485-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-485-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-25-683x1024.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-25-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-113-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-113-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-33-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-33-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-273-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-273-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-211-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-211-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-527-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-527-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-41-683x1024.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-41-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-460-683x1024.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-460-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-286-683x1024.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-286-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-444-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-444-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-133-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-133-scaled.webp)[![](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-179-683x1024.webp)](https://www.mitoaction.org/wp-content/uploads/2026/01/2025-Boston-Energy-Walk-–-MitoAction-–-092725_MitoZooNight-179-scaled.webp) ## 2024 Energy Walk Photos [![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-069-1024x778.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-069.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-136-1024x764.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-136.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-047-903x1024.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-047.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-063-1024x681.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-063.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_157-1024x684.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_157-scaled.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_130-1024x715.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_130-scaled.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_223-718x1024.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_223-scaled.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_128-1024x698.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_128-scaled.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_137-1024x698.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_137-scaled.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_105-1024x684.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_105-scaled.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_198-1024x684.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_198-scaled.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-116-1024x785.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-116.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-119-1024x863.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-119.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-012-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-012.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_142-1024x705.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_142-scaled.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-068-1024x1003.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-068.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_207-1024x684.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_207-scaled.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_165-1024x679.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_165-scaled.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_123-1024x794.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_123-scaled.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-123-1024x687.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-123.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-054-1024x808.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-054.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_148-1024x684.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_148-scaled.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-055-721x1024.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-055.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_229-1024x684.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_229-scaled.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-125-1024x808.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-125.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_214-1024x890.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_214-scaled.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-078-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-078.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_144-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_144-scaled.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_179-1024x684.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_179-scaled.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_102-1024x684.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_102-scaled.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-093-1024x815.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-093.jpg) ## 2023 Energy Walk Photos ![](https://www.mitoaction.org/wp-content/uploads/2023/10/Screenshot-2023-10-16-at-10.07.36 AM-1024x660.png)![](https://www.mitoaction.org/wp-content/uploads/2023/10/Screenshot-2023-10-16-at-10.08.00 AM-1-1024x676.png)![](https://www.mitoaction.org/wp-content/uploads/2023/10/Screenshot-2023-10-16-at-10.08.17 AM-1-1024x672.png)![](https://www.mitoaction.org/wp-content/uploads/2023/10/Screenshot-2023-10-16-at-10.08.28 AM-1-1024x678.png)![](https://www.mitoaction.org/wp-content/uploads/2023/10/Screenshot-2023-10-16-at-10.07.12 AM-1-1024x688.png)![](https://www.mitoaction.org/wp-content/uploads/2023/10/Screenshot-2023-10-16-at-10.09.27 AM-1-1024x644.png)![](https://www.mitoaction.org/wp-content/uploads/2023/10/Screenshot-2023-10-16-at-10.09.41 AM-1-1024x681.png)![](https://www.mitoaction.org/wp-content/uploads/2023/10/Screenshot-2023-10-16-at-10.09.53 AM-1-1024x680.png)![](https://www.mitoaction.org/wp-content/uploads/2023/10/Screenshot-2023-10-16-at-10.10.24 AM-1-1024x666.png)![](https://www.mitoaction.org/wp-content/uploads/2023/10/Screenshot-2023-10-16-at-10.10.37 AM-1-1024x686.png)![](https://www.mitoaction.org/wp-content/uploads/2023/10/Screenshot-2023-10-16-at-10.06.52 AM-1024x661.png)![](https://www.mitoaction.org/wp-content/uploads/2023/10/Screenshot-2023-10-16-at-10.08.44 AM-2-1024x673.png)![](https://www.mitoaction.org/wp-content/uploads/2023/10/Screenshot-2023-10-16-at-10.10.57 AM-1024x669.png)![](https://www.mitoaction.org/wp-content/uploads/2023/10/Screenshot-2023-10-16-at-10.10.48 AM-1024x670.png) ## 2022 Energy Walk Photos [![](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-15-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-15.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-14-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-14.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-12-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-12.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-11-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-11.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-10-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-10.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-09-683x1024.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-09.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-08-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-08.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-07-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-07.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-06-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-06.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-05-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-05.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-04-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-04.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-Team-Matthew-01-1024x1024.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-Team-Matthew-01.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-02-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-02.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-03-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-03.jpg) ## 2021 Walk Photos [![](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-14-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-14.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-02-1024x682.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-02.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-01.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-01.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-13-1024x682.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-13.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-12-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-12.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-11-1024x682.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-11.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-10-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-10.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-09-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-09.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-08-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-08.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-07-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-07.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-06-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-06.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-05-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-05.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-04-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-04.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-03-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-03.jpg) ### **Interested in Hosting an Energy Wal**k in Your Community? Our Energy Walks start with volunteers just like you! Get in touch with us and we’ll help get you started and support your work along the way. [Email info@mitoaction.org](mailto:info@mitoaction.org) --- ### [MitoAction Educational Series for Genetic Counselors](https://www.mitoaction.org/for-medical-professionals/mitoaction-educational-series-for-genetic-counselors/) **Published:** June 10, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [For Medical Professionals](https://www.mitoaction.org/for-medical-professionals/ "Back to For Medical Professionals") # 2026 MitoAction Educational Series for Genetic Counselors A nine part virtual webinar series designed to prepare genetic counselors and other clinicians across specialties to recognize, counsel, and support individuals and families affected by mitochondrial disease. [Register Today!](https://events.ringcentral.com/events/2026-mitoaction-educational-series-for-genetic-counselors/registration) ![](https://www.mitoaction.org/wp-content/uploads/2026/06/MitoAction-Educational-Series-for-Genetic-Counselors--A-Man-Taking-Notes-While-on-a-Virtual-Webinar-1024x683.webp) This is a nine part virtual webinar series designed to prepare genetic counselors and other clinicians across specialties to recognize, counsel, and support individuals and families affected by mitochondrial disease. Through practical clinical tips, patient perspectives, and key resources, this series builds confidence in understanding mitochondrial disease presentation, management, and the lived experience of patients across diverse care settings. The series will begin with Dr. Kuo, from Laurie Children’s Hospital, giving a “Tour of the Mitochondrion” where he will build a practical framework for understanding mitochondrial disorders and discuss key pathways, features, and examine the pathophysiology of mitochondrial dysfunction. The series will include other vital topics and skill building so as to better understand: Direct to Consumer Testing, Patient Diagnostic Journeys, Motivational Interviewing/Trauma Informed Care (by a Mito Patient!), Clinical Trial Overview, Current Landscape of Prenatal Testing, Complex Mito Cases, LHON Patient Care, and Neurologic Manifestations in Mito Across the Lifespan Mitochondrial Disease can weave itself into a variety of genetic spaces. If you are a practicing Genetic Counselor, you will not want to miss this important training, no matter where you currently practice! This will prepare you to go into your unique spaces with vital information for your patients! *CEUs: Eligible for up to 9.5 contact hours. CEUs are available for both live attendance and on‑demand viewing. Certificates will be issued via the NSGC CEU Portal, based on confirmed participation and completion of the required quiz and feedback/self‑assessment form (required for all participants, including both live attendees and those viewing on‑demand). This event has been submitted to the National Society of Genetic Counselors (NSGC) for approval of Category 1 CEUs. The American Board of Genetic Counseling (ABGC) accepts CEUs approved by NSGC for purposes of recertification. Approval for the requested CEUs and Contact Hours is currently pending.* ### Webinar Details **WHO:** Genetic counselors, medical genetics professionals, and other clinicians working or interested in mitochondrial disease **WHEN:** This series is from **August 10-November 30** and will provide CEU credits for genetic counselors who attend live OR watch recordings! **WHERE:** All sessions are virtual and recorded **COST:** $40 if requesting CEU’s, FREE if NOT requesting CEU’s [Register Today!](https://events.ringcentral.com/events/2026-mitoaction-educational-series-for-genetic-counselors/registration) ### Presenting Sponsors [![UCB logo](https://www.mitoaction.org/wp-content/uploads/2026/08/ucb-1-1024x1024.png)](https://www.ucb.com/)[![Chemistry RX logo](https://www.mitoaction.org/wp-content/uploads/2026/08/ChemistryRx-Logo.png)](https://www.chemistryrx.com/) --- ### [TK2d Awareness Day](https://www.mitoaction.org/join-the-cause/raise-your-voice/awareness-week/tk2d-awareness-week/) **Published:** September 11, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Tuesday, September 8, 2026** is TK2D Awareness Day! TK2D is a mitochondrial myopathy, which causes severe muscle weakness. Together, let’s educate ourselves and spread awareness on this rare disease to support those affected by it. Download our TK2D awareness informational graphics to learn more and get ready for World Mitochondrial Awareness Week. [![Graphic explaining life with TK2D from the patient and caregiver perspectives](https://www.mitoaction.org/wp-content/uploads/2023/09/Helpful_Tips_TK2D_Strategic_Visual_-FINAL_ITERATION-_060223-Imagethink-1.png)](https://www.mitoaction.org/wp-content/uploads/2023/09/Helpful_Tips_TK2D_Strategic_Visual_-FINAL_ITERATION-_060223-Imagethink-1.png) ## TK2D Graphics in Other Languages #### Spanish [![](https://www.mitoaction.org/wp-content/uploads/2023/09/UCB-Helpful-Tips-TK2D-Strategic-Visual-Spanish-060223-Imagethink-1-1024x576.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/09/UCB-Helpful-Tips-TK2D-Strategic-Visual-Spanish-060223-Imagethink-1.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/09/LifewithTK2d-banner-Spanish-ES-DA-2300004-1024x576.png)](https://www.mitoaction.org/wp-content/uploads/2023/09/LifewithTK2d-banner-Spanish-ES-DA-2300004.png) #### German [![](https://www.mitoaction.org/wp-content/uploads/2023/09/UCB-Helpful-Tips-TK2D-Strategic-Visual-German-060223-Imagethink-1024x576.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/09/UCB-Helpful-Tips-TK2D-Strategic-Visual-German-060223-Imagethink.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/09/v4_Life-with-TK2d_DE-DA-2300008_Rectangle_22Aug23-1024x576.png)](https://www.mitoaction.org/wp-content/uploads/2023/09/v4_Life-with-TK2d_DE-DA-2300008_Rectangle_22Aug23.png) #### Italian [![](https://www.mitoaction.org/wp-content/uploads/2023/09/UCB-Helpful-Tips-TK2D-Strategic-Visual-Italian-060223-Imagethink-1024x576.jpg)](https://www.mitoaction.org/wp-content/uploads/2023/09/UCB-Helpful-Tips-TK2D-Strategic-Visual-Italian-060223-Imagethink.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2023/09/Life-with-TK2d-Italian_rectangleIT-N-MT-TK2d-2300005-1024x576.png)](https://www.mitoaction.org/wp-content/uploads/2023/09/Life-with-TK2d-Italian_rectangleIT-N-MT-TK2d-2300005.png) #### French [![](https://www.mitoaction.org/wp-content/uploads/2023/09/FR-LifewithTK2d_rectangle_17Aug23_FR-N-MT-TK2d-2300005-1024x576.png)](https://www.mitoaction.org/wp-content/uploads/2023/09/FR-LifewithTK2d_rectangle_17Aug23_FR-N-MT-TK2d-2300005.png) --- ### [Patient & Family Support](https://www.mitoaction.org/programs-support/patient-and-family-support/) **Published:** March 16, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # Patient & Family Support ##### Connect with other mito patients and family members, and create lasting personal relationships and a robust support system. MitoAction offers a wide-range of support opportunities to people living with mitochondrial disease and their loved ones. Our goal is to create lasting personal connections to support anyone within the mito community. As living with a rare disease can be isolating, it’s important to surround yourself with a support system, and we can help. If you’re just starting your journey and need immediate support, call **[1-888-MITO-411 (648-6411)](tel:+18886486411)** to connect with a volunteer who can relate to the journey of diagnosis and the challenges of living with mitochondrial disease. ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Mito411-Woman-on-the-phone-in-her-living-room-1200x600.webp)#### Mito411 Mito411 offers patients a direct link to someone who understands by means of a one-on-one phone call. [Learn More](https://www.mitoaction.org/programs-support/patient-and-family-support/mito411/) ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Mens-Support-Call-Man-meeting-with-others-on-Zoom-1200x600.webp)#### Support Calls Support Calls include a wide array of online support for different groups. Calls range from general support, to specific groups including FAODs, young adults, and men’s calls. There is something for everyone. [Learn More](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/) ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-MitoAction-Memories-Memorial-candle-1200x600.webp)#### MitoAction Memories MitoAction Memories is aimed at providing the delicate, yet necessary, support to families navigating their grief after losing a loved one. [Learn More](https://www.mitoaction.org/programs-support/patient-and-family-support/memories/) ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-MitoSocials-Little-boy-playing-on-playground-equipment-1200x600.webp)#### MitoPlaydates MitoPlaydates helps families with mito children to facilitate chances to interact with other local families on a similar journey. [Learn More](https://www.mitoaction.org/programs-support/patient-and-family-support/mito-playdate/) ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-MitoSocials-Young-girl-and-her-mother-do-an-arts-and-crafts-project-1200x600.webp)#### MitoSocials MitoSocials, hosted both in-person and virtually, offer folks living in close proximity the chance to meet, share, and be understood. [Learn More](https://www.mitoaction.org/programs-support/patient-and-family-support/mito-socials/) ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Positive-Peach-Packages-A-young-woman-holding-a-simple-box-with-a-twine-bow-1200x600.webp)#### Positive Peach Packages Positive Peach Packages are a way to offer a positive touchpoint from someone in the mito community. By nominating someone for a Positive Peach Package, you are reminding them that they are never alone on their journey. [Learn More](https://www.mitoaction.org/programs-support/patient-and-family-support/positive-peach-packages/) ![](https://www.mitoaction.org/wp-content/uploads/2026/07/Caroline-and-Dr-Peter-Cropped--Lineys-Lovies--MitoAction-1024x512.webp)#### Liney’s Lovies Liney’s Lovies provides comfort and joy to children affected by mito by gifting them soft, plush toys during times when they need extra support. [Learn More](https://www.mitoaction.org/programs-support/patient-and-family-support/lineys-lovies/) --- ### [Matthew Harty Golf Tournament](https://www.mitoaction.org/events/matthew-harty-golf-tournament/) **Published:** May 24, 2019 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Events](https://www.mitoaction.org/events/ "MitoAction Events") # Matthew Harty Golf Tournament The Matthew Harty Golf Tournament plays an essential role in supporting the [Matthew Harty Camper Fund](https://www.mitoaction.org/programs-support/mhcf/), the Matthew Harty Scholarship Fund and [Wish Trips](https://www.mitoaction.org/programs-support/mitoaction-programs/dalias-wish/ "Dalia’s Wish"). ![The Matthew Harty Golf Tournament plays an essential role in supporting the Matthew Harty Camper Fund, the Matthew Harty Scholarship Fund and Wish Trips.](https://www.mitoaction.org/wp-content/uploads/2024/09/Matthew-Harty-Golf-Tournament-MitoAction-1024x683.jpg) **Join us on Monday, October 5, 2026 for the 13th Annual Matthew Harty Golf Tournament**! **North Andover Country Club** 500 Great Pond Rd. North Andover, MA [Register Now!](https://eventsupporter.onecause.com/event/organizations/2078d553-77cf-4f3d-bc7e-9a225423be36/events/vevt:e8426f22-9213-4491-962c-e657548a0633/home/story) ## The Matthew Harty Golf Tournament Support Vital MitoAction Programs The Matthew Harty Camper Fund Golf Tournament is more than a day on the course, it is a celebration of Matthew’s life and a powerful way to create hope for children and families living with mitochondrial disease. Now in its 13th year, this special event provides critical support for three life-changing MitoAction programs: the [Matthew Harty Camper Fund](https://www.mitoaction.org/programs-support/mitoaction-programs/mhcf/ "Matthew Harty Camper Fund"), the [Matthew Harty Scholarship Fund](https://www.mitoaction.org/programs-support/mitoaction-programs/mhcf/scholarship/), and [Dalia’s Wish](https://www.mitoaction.org/programs-support/mitoaction-programs/dalias-wish/). Because of the extraordinary generosity of our sponsors, golfers, donors, and volunteers, MitoAction has been able to send more than 500 children living with mitochondrial disease to summer camp, giving them the opportunity to build friendships, gain confidence, and experience the joy of simply being a kid. Through the Matthew Harty Scholarship Fund, we have also awarded **140 scholarships** **totaling more than** **$250,000** to students pursuing higher education while living with mitochondrial disease or honoring Matthew’s legacy through service and compassion. We are especially proud to continue recognizing North Andover High School seniors who have demonstrated an outstanding commitment to supporting children with special needs through volunteerism or their chosen field of study. The tournament also helps make **[Dalia’s Wish](https://www.mitoaction.org/programs-support/mitoaction-programs/dalias-wish/)** possible, providing unforgettable, all-expenses-paid wish vacations for families affected by mitochondrial disease through our partnership with Give Kids the World Village. These experiences offer families precious time together, creating joyful memories that last a lifetime during journeys that are often filled with medical uncertainty and unimaginable challenges. As we gather for the 13th annual tournament on **October 5, 2026**, we celebrate the incredible community that has stood beside the Harty family and MitoAction for more than a decade. Every foursome, sponsorship, donation, and volunteer hour helps ensure that more children can attend camp, more students can pursue their dreams, and more families can experience moments of hope and happiness. Thank you for helping us honor Matthew’s legacy. Together, we are transforming lives and ensuring that families facing mitochondrial disease know they are never alone. ![](https://www.mitoaction.org/wp-content/uploads/2019/05/mharty-logo-print-1024x886.jpg) --- ### [International Metabolic Conference](https://www.mitoaction.org/events/internationalmetabolicconference/) **Published:** February 12, 2020 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") 2026 # **International Metabolic Conference** For Families & Individuals Impacted by Fatty Acid Oxidation Disorders ## Virtual Conference July 25-26, 2026 [Register Now!](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) ![](https://www.mitoaction.org/wp-content/uploads/2024/11/IMC-2024-—-Group-Photo-—-MitoAction-International-Metabolic-Conference-1024x683.webp) The International Metabolic Conference for Families and Individuals Impacted by Fatty Acid Oxidation Disorders, is an event dedicated to advancing knowledge and collaboration of patients, clinicians, and researchers. In partnership with Dr. Jerry Vockley, Dr. Melanie Gillingham, and [INFORM](https://informnetwork.org/inform-families/), MitoAction assembles leading experts to present to patients, families, caregivers, and clinicians about disease management, clinical trials, nutrition, and the social needs related to FAODs. This is a great opportunity for patients, families, and clinicians to meet one another, share lived experiences, and learn; as we gain insight in moving forward as a community. **This year we will meet VIRTUALLY and ALL are welcome!** Whether you are new to the FAOD community, a family member, caregiver, adult patient, or friend; there is something for everyone! **Clinicians are encouraged to attend too!** Invite your child’s pediatrician, your PCP or the new “Fellow” at your metabolic clinic! Practical and scientific presentations will co-exist in this space! Our goal is to cultivate numerous opportunities for people to connect this year and not feel fatigued from two long days of presentations! So our conference committee has worked hard at spacing **presentations and roundtables out before** the **main conference July 25-26th**! Please see the schedule of our “Pre-Conference” presentations and roundtable sessions below. Our “Pre-Conference” opportunities will begin **July 19th at 3pm **EST**. Our pre-conference gatherings will be a combination of presentations and roundtables on different days.** Although presentations will be recorded, roundtable discussions will NOT be recorded to protect patient privacy. Presentations are hosted and led by a metabolic clinician. Roundtables are led by our conference committee leaders and are a great space to meet both patients, caregivers and friends with an FAOD. These meaningful spaces will allow you time to pick the brains of others in our community, share your experiences, and build lasting friendships! Our main two day conference sessions are **Saturday, July 25, from 9:30 am to 4 pm EST** and **Sunday, July 26, from 1 to 6 pm EST**! You will only be required to register once, then you will be able to use your link to access the virtual meeting space all week! **Registration for the conference will begin June 1st!** But we encourage you to take a look at the schedule now and get ready! To stay informed about the conference, support spaces, trials, and news, sign up for our FAOD newsletter [HERE](https://www.mitoaction.org/newsletters/newsletter-signup/). Together we learn, we love, we grow! ### 2026 Conference Info **Dates** Pre-Conference: July 19-23, 2026 **Main Conference:** July 25-26, 2026 **Location** This year’s conference will be held virtually. **Please Note:** Saturday’s sessions now start at **9:30 AM EST**! Be sure to update your calendars. [Agenda](https://www.mitoaction.org/events/internationalmetabolicconference/imc-agenda/) [Speakers](https://www.mitoaction.org/events/internationalmetabolicconference/speakers/) [Register Now!](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) ### Sponsors ##### Presenting Sponsor ![](https://www.mitoaction.org/wp-content/uploads/2024/04/Ultragenyx-1024x423.png) ##### Bronze Sponsors ![](https://www.mitoaction.org/wp-content/uploads/2026/05/Nutricia-Logo-on-Light-Steel-1024x340.webp) ![](https://www.mitoaction.org/wp-content/uploads/2026/05/Protocol-Logo-1024x293.webp) ##### Exhibitor ![](https://www.mitoaction.org/wp-content/uploads/2026/05/In-Vitro-Diagnostic-Solutions-Logo-on-Light-Steel-1024x399.webp) ![](https://www.mitoaction.org/wp-content/uploads/2026/07/Vitaflo-Brandmark_TM-strapline-process-colours-1024x724.png) ## ## 2026 IMC Agenda Join MitoAction and the International Network for Fatty Acid Oxidation Research and Management (INFORM) for the 7th Annual International Metabolic Conference for Fatty Acid Oxidation Disorders on July 25-26, 2026. [Pre-Conference](#pre-conference) [Saturday, July 25](#Saturday) [Sunday, July 26](#Sunday) **Please note**: All conference sessions and pre-conference roundtables are scheduled in Eastern Standard Time (EST). Be sure to adjust for your local time zone! *The conference schedule is subject to change.* ### **Schedule for Pre-Conference Roundtables & Presentations** ##### Sunday, July 19 2 events found. # Events for July 19, 2026 - [ ](https://www.mitoaction.org/calendar/2026-07-18/?shortcode=38b00aac "Previous day") - [ ](https://www.mitoaction.org/calendar/2026-07-20/?shortcode=38b00aac "Next day") [ Today](https://www.mitoaction.org/calendar/today/?attachment=admin-ajax.php&shortcode=38b00aac) 2026-07-19 July 19, 2026 Select date. ## 3:00 pm July 19 @ 3:00 pm - 4:00 pm ### [ Presentation: “Breaking Down” FAODs: MCADD, LCHADD, CPT2, VLCADD (and more!) ](# "Presentation: “Breaking Down” FAODs: MCADD, LCHADD, CPT2, VLCADD (and more!)") Presented by: Lauren O’Grady, MS, CGC ## Presentation: “Breaking Down” FAODs: MCADD, LCHADD, CPT2, VLCADD (and more!) July 19 @ 3:00 pm – 4:00 pm The FAOD community is comprised of numerous types of FAODs. How do they compare, what enzymes are affected, and why does this lead to different treatments? Did you ever wish someone would show you a picture and really “Break things down.” Join this discussion! [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) #### About the Speaker ![Lauren O’Grady, MS, CGC](https://www.mitoaction.org/wp-content/uploads/2026/05/Lauren-OGrady-Portrait-600x600.webp "Lauren O’Grady, MS, CGC") ##### Lauren O’Grady, MS, CGC Lauren O'Grady, MS, CGC is a senior genetic counselor in the medical genetics division at Massachusetts General Hospital (MGH) where she has practiced since 2015. She specializes in biochemical genetics and newborn screening. She works closely with patients of all ages with inborn errors of metabolism. ## 7:00 pm July 19 @ 7:00 pm - 8:00 pm ### [ You Are Not Alone: Undiagnosed Community Roundtable ](# "You Are Not Alone: Undiagnosed Community Roundtable") ## You Are Not Alone: Undiagnosed Community Roundtable July 19 @ 7:00 pm – 8:00 pm Meet up with members of the Mito/FAOD community who are genetically undiagnosed. Join in to share stories, resources, and support each other on our undiagnosed journeys. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) - [ Previous Day ](https://www.mitoaction.org/calendar/2026-07-18/?shortcode=38b00aac "Previous Day") - [ Next Day ](https://www.mitoaction.org/calendar/2026-07-20/?shortcode=38b00aac "Next Day") Subscribe to calendar - [ Google Calendar ](https://www.google.com/calendar/render?cid=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-19%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session) - [ iCalendar ](webcal://www.mitoaction.org/?post_type=tribe_events&tribe-bar-date=2026-07-19&ical=1&eventDisplay=list&tribe_events_cat=imc-pre-conference-session) - [ Outlook 365 ](https://outlook.office.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-19%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session&name=MitoAction+Events+for+July+19,+2026) - [ Outlook Live ](https://outlook.live.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-19%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session&name=MitoAction+Events+for+July+19,+2026) - [ Export .ics file ](https://www.mitoaction.org/calendar/2026-07-19/?shortcode=38b00aac&ical=1) - [ Export Outlook .ics file ](https://www.mitoaction.org/calendar/2026-07-19/?shortcode=38b00aac&outlook-ical=1#038;ical=1) ##### Monday, July 20 1 event found. # Events for July 20, 2026 - [ ](https://www.mitoaction.org/calendar/2026-07-19/?shortcode=556bd91c "Previous day") - [ ](https://www.mitoaction.org/calendar/2026-07-21/?shortcode=556bd91c "Next day") [ Today](https://www.mitoaction.org/calendar/today/?attachment=admin-ajax.php&shortcode=556bd91c) 2026-07-20 July 20, 2026 Select date. ## 7:00 pm July 20 @ 7:00 pm - 8:00 pm ### [ Roundtable Discussion: Maintaining Mental Health Through Different Waves of Your FAOD ](# "Roundtable Discussion: Maintaining Mental Health Through Different Waves of Your FAOD") ## Roundtable Discussion: Maintaining Mental Health Through Different Waves of Your FAOD July 20 @ 7:00 pm – 8:00 pm If you are an adult patient or a caregiver of an FAOD you know that there are unique challenges when managing a chronic illness. This is a safe space to discuss how to navigate these ups and downs, share meaningful resources, and connect on a deeper level while creating meaningful strategies. This unique space will be co-hosted by Sharickah Rogers an LPC with two boys w/ VLCAD, Tasia Rechisky an adult rare diseas advocate w/ VLCAD and is an advocate for rare disease and Yi Tak (Daisy) Tsang, a clinical assistant professor in Pediatric Psychology at the U of M who has presented/led roundtables at the FAOD conference the last two years!! [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) - [ Previous Day ](https://www.mitoaction.org/calendar/2026-07-19/?shortcode=556bd91c "Previous Day") - [ Next Day ](https://www.mitoaction.org/calendar/2026-07-21/?shortcode=556bd91c "Next Day") Subscribe to calendar - [ Google Calendar ](https://www.google.com/calendar/render?cid=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-20%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session) - [ iCalendar ](webcal://www.mitoaction.org/?post_type=tribe_events&tribe-bar-date=2026-07-20&ical=1&eventDisplay=list&tribe_events_cat=imc-pre-conference-session) - [ Outlook 365 ](https://outlook.office.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-20%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session&name=MitoAction+Events+for+July+20,+2026) - [ Outlook Live ](https://outlook.live.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-20%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session&name=MitoAction+Events+for+July+20,+2026) - [ Export .ics file ](https://www.mitoaction.org/calendar/2026-07-20/?shortcode=556bd91c&ical=1) - [ Export Outlook .ics file ](https://www.mitoaction.org/calendar/2026-07-20/?shortcode=556bd91c&outlook-ical=1#038;ical=1) ##### Tuesday, July 21 2 events found. # Events for July 21, 2026 - [ ](https://www.mitoaction.org/calendar/2026-07-20/?shortcode=d89f29e3 "Previous day") - [ ](https://www.mitoaction.org/calendar/2026-07-22/?shortcode=d89f29e3 "Next day") [ Today](https://www.mitoaction.org/calendar/today/?attachment=admin-ajax.php&shortcode=d89f29e3) 2026-07-21 July 21, 2026 Select date. ## 12:00 pm July 21 @ 12:00 pm - 1:00 pm ### [ Presentation: Navigating the Medical System as an FAOD Adult: Exploring the Unknown ](# "Presentation: Navigating the Medical System as an FAOD Adult: Exploring the Unknown") Presented by: Jessica Gold, MD, PhD Amanda Pritchard, MD ## Presentation: Navigating the Medical System as an FAOD Adult: Exploring the Unknown July 21 @ 12:00 pm – 1:00 pm Adulting with an FAOD presents unique challenges and questions. This presentation will discuss the multidisciplinary care team, how to improve coordination of care and how clinicians safely apply “trial and error” for situations where they have no clear data. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) #### About the Speaker ![Jessica Gold, MD, PhD](https://www.mitoaction.org/wp-content/uploads/2024/02/Photo-Jessica-Gold.webp "Jessica Gold, MD, PhD") ##### Jessica Gold, MD, PhD Dr. Jessica Gold is a medical geneticist trained in pediatrics and internal medicine with a fellowship at Children’s Hospital of Philadelphia. She currently practices at Northwell Health in NY. Both her clinical work and research is dedicated to helping adolescents and young adults with inherited metabolic disorders prepare for adulthood. For many young people, puberty and reproductive health are important milestones in emerging adulthood. Yet, clinicians lack information on these topics for people with FAODs, which impacts their ability to provide guidance. Dr. Gold is embarking on a project that is the first step in learning how people with FAODs approach puberty and reproductive health. ![Amanda Pritchard, MD](https://www.mitoaction.org/wp-content/uploads/2024/01/Photo-Amanda-Barone-Pritchard.webp "Amanda Pritchard, MD") ##### Amanda Pritchard, MD Dr. Amanda Barone Pritchard is an Associate Professor of Pediatrics at University of Michigan Health in the division of Pediatric Genetics, Metabolism, and Genomic Medicine. Dr. Pritchard attended the University of Pittsburgh School of Medicine before completing Pediatric Residency at Lurie Children’s Hospital in Chicago. She then trained in Medical Genetics and Genomics and completed a Medical Biochemical Genetics fellowship at the Children’s Hospital of Philadelphia. She has been involved in several clinical trials for inborn errors of metabolism and aids in coordination of follow-up for abnormal newborn screens. Dr. Pritchard serves as Program Director for the Medical Biochemical Genetics Fellowship at the University of Michigan. ## 7:00 pm July 21 @ 7:00 pm - 8:00 pm ### [ Roundtable Discussion: All Things MCADD ](# "Roundtable Discussion: All Things MCADD") ## Roundtable Discussion: All Things MCADD July 21 @ 7:00 pm – 8:00 pm From infancy to the teenage years, this roundtable will be a space for MCADD families to share their experiences and learn from one another. MCADD is the most common FAOD and is largely treated through avoiding fasting. Our kids tend to be outwardly healthy most of the time, but MCADD is always there and has a tendency to sneak up on us in different ways at different stages of life. Let’s connect and discuss all things MCADD! [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) - [ Previous Day ](https://www.mitoaction.org/calendar/2026-07-20/?shortcode=d89f29e3 "Previous Day") - [ Next Day ](https://www.mitoaction.org/calendar/2026-07-22/?shortcode=d89f29e3 "Next Day") Subscribe to calendar - [ Google Calendar ](https://www.google.com/calendar/render?cid=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-21%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session) - [ iCalendar ](webcal://www.mitoaction.org/?post_type=tribe_events&tribe-bar-date=2026-07-21&ical=1&eventDisplay=list&tribe_events_cat=imc-pre-conference-session) - [ Outlook 365 ](https://outlook.office.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-21%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session&name=MitoAction+Events+for+July+21,+2026) - [ Outlook Live ](https://outlook.live.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-21%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session&name=MitoAction+Events+for+July+21,+2026) - [ Export .ics file ](https://www.mitoaction.org/calendar/2026-07-21/?shortcode=d89f29e3&ical=1) - [ Export Outlook .ics file ](https://www.mitoaction.org/calendar/2026-07-21/?shortcode=d89f29e3&outlook-ical=1#038;ical=1) ##### Wednesday, July 22 1 event found. # Events for July 22, 2026 - [ ](https://www.mitoaction.org/calendar/2026-07-21/?shortcode=ca1d53a1 "Previous day") - [ ](https://www.mitoaction.org/calendar/2026-07-23/?shortcode=ca1d53a1 "Next day") [ Today](https://www.mitoaction.org/calendar/today/?attachment=admin-ajax.php&shortcode=ca1d53a1) 2026-07-22 July 22, 2026 Select date. ## 12:00 pm July 22 @ 12:00 pm - 1:00 pm ### [ Roundtable Discussion: “International Experience” ](# "Roundtable Discussion: “International Experience”") ## Roundtable Discussion: “International Experience” July 22 @ 12:00 pm – 1:00 pm Families with FAODs exist all over the world. In this fun space we will explore: How do you manage your/your child’s medical routine/diet in your own country? What are creative ways to organize traveling to other countries? How to the health care systems vary in different spaces? Where do you feel the most safe traveling? And what should you consider traveling with/what is available in different countries? [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) - [ Previous Day ](https://www.mitoaction.org/calendar/2026-07-21/?shortcode=ca1d53a1 "Previous Day") - [ Next Day ](https://www.mitoaction.org/calendar/2026-07-23/?shortcode=ca1d53a1 "Next Day") Subscribe to calendar - [ Google Calendar ](https://www.google.com/calendar/render?cid=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-22%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session) - [ iCalendar ](webcal://www.mitoaction.org/?post_type=tribe_events&tribe-bar-date=2026-07-22&ical=1&eventDisplay=list&tribe_events_cat=imc-pre-conference-session) - [ Outlook 365 ](https://outlook.office.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-22%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session&name=MitoAction+Events+for+July+22,+2026) - [ Outlook Live ](https://outlook.live.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-22%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session&name=MitoAction+Events+for+July+22,+2026) - [ Export .ics file ](https://www.mitoaction.org/calendar/2026-07-22/?shortcode=ca1d53a1&ical=1) - [ Export Outlook .ics file ](https://www.mitoaction.org/calendar/2026-07-22/?shortcode=ca1d53a1&outlook-ical=1#038;ical=1) ##### Thursday, July 23 2 events found. # Events for July 23, 2026 - [ ](https://www.mitoaction.org/calendar/2026-07-22/?shortcode=fc62cfd0 "Previous day") - [ ](https://www.mitoaction.org/calendar/2026-07-24/?shortcode=fc62cfd0 "Next day") [ Today](https://www.mitoaction.org/calendar/today/?attachment=admin-ajax.php&shortcode=fc62cfd0) 2026-07-23 July 23, 2026 Select date. ## 12:00 pm July 23 @ 12:00 pm - 1:00 pm ### [ Roundtable Discussion: Navigating School Life ](# "Roundtable Discussion: Navigating School Life") ## Roundtable Discussion: Navigating School Life July 23 @ 12:00 pm – 1:00 pm This roundtable discussion will bring together families and educators to explore how to successfully support students in the school setting. Participants will learn practical strategies for navigating school systems and educating teachers/staff about medical and academic needs to promote safety, inclusion, and student success. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) ## 7:00 pm July 23 @ 7:00 pm - 8:00 pm ### [ Roundtable Discussion: Navigating Romantic Relationships with an FAOD ](# "Roundtable Discussion: Navigating Romantic Relationships with an FAOD") ## Roundtable Discussion: Navigating Romantic Relationships with an FAOD July 23 @ 7:00 pm – 8:00 pm Navigating romantic relationships can be challenging, and having an FAOD adds additional layers to the mix. Come chat with newlyweds Alex and Tanner Hansen to discuss all the stage and components that come with partnering. Including: Important conversation to have while dating, how to plan for marriage with a disability, birth control considerations, and more! Bring your questions and topics you to sort through! [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) - [ Previous Day ](https://www.mitoaction.org/calendar/2026-07-22/?shortcode=fc62cfd0 "Previous Day") - [ Next Day ](https://www.mitoaction.org/calendar/2026-07-24/?shortcode=fc62cfd0 "Next Day") Subscribe to calendar - [ Google Calendar ](https://www.google.com/calendar/render?cid=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-23%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session) - [ iCalendar ](webcal://www.mitoaction.org/?post_type=tribe_events&tribe-bar-date=2026-07-23&ical=1&eventDisplay=list&tribe_events_cat=imc-pre-conference-session) - [ Outlook 365 ](https://outlook.office.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-23%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session&name=MitoAction+Events+for+July+23,+2026) - [ Outlook Live ](https://outlook.live.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-23%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session&name=MitoAction+Events+for+July+23,+2026) - [ Export .ics file ](https://www.mitoaction.org/calendar/2026-07-23/?shortcode=fc62cfd0&ical=1) - [ Export Outlook .ics file ](https://www.mitoaction.org/calendar/2026-07-23/?shortcode=fc62cfd0&outlook-ical=1#038;ical=1) ### **Schedule for Saturday, July 25, 2026** 12 events found. # Events for July 25, 2026 - [ ](https://www.mitoaction.org/calendar/2026-07-24/?shortcode=5b2a59d6 "Previous day") - [ ](https://www.mitoaction.org/calendar/2026-07-26/?shortcode=5b2a59d6 "Next day") [ Today](https://www.mitoaction.org/calendar/today/?attachment=admin-ajax.php&shortcode=5b2a59d6) 2026-07-25 July 25, 2026 Select date. ## 9:30 am July 25 @ 9:30 am - 10:15 am ### [ Welcome ](# "Welcome") Presented by: Kira Mann ## Welcome July 25 @ 9:30 am – 10:15 am [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) #### About the Speaker ![Kira Mann](https://www.mitoaction.org/wp-content/uploads/2023/10/Image-6-24-26-at-1236-PM.jpeg "Kira Mann") ##### Kira Mann Kira serves as CEO of MitoAction and champions the growth of the programs and services offered by MitoAction. Her priority is to ensure that each and every person affected by mitochondrial disease knows they are not alone and that the MitoAction team will be here every step of their journey. Kira is committed to stewarding key funding opportunities, strengthening the organization’s business development and governance and working with the community to increase MitoAction’s national impact and presence in the areas of aware- ness, education and advocacy. “I am honored to lead this incredible team who works tirelessly each and every day on behalf of the amazing community we serve. I love hearing from our families, and I welcome you to reach out, share your story and help ensure that MitoAction is doing everything we can to pro- vide the support and services that are most meaningful to you.” Contact Kira at or call 248-797-2399. July 25 @ 9:45 am - 10:15 am ### [ Ultragenyx Study Updates and Initiatives ](# "Ultragenyx Study Updates and Initiatives") ## Ultragenyx Study Updates and Initiatives July 25 @ 9:45 am – 10:15 am Join the Ultragenyx team for an overview of their latest research, clinical study updates, and ongoing initiatives focused on advancing treatments for individuals living with fatty acid oxidation disorders (FAODs). Learn about current progress, future directions, and the company’s continued commitment to partnering with the FAOD community to accelerate innovation and improve patient outcomes. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) ## 10:00 am July 25 @ 10:15 am - 11:00 am ### [ Understanding LC-FAOD Guidelines ](# "Understanding LC-FAOD Guidelines") Presented by: Daniela Karall, MD, IBCLC ## Understanding LC-FAOD Guidelines July 25 @ 10:15 am – 11:00 am Guidelines for FAODs are essential as clinicians seek to collaborate and find treatment for LC-FAODs. In the last 5 years, an international group of experts in the FAOD field worked together to discuss and create guidelines for LC-FAOD treatment, which will be published in the near future. Some of these clinicians are also involved in INFORM / part of INFORM. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) #### About the Speaker ![Daniela Karall, MD, IBCLC](https://www.mitoaction.org/wp-content/uploads/2026/04/Daniela-Karall-Portrait-600x600.webp "Daniela Karall, MD, IBCLC") ##### Daniela Karall, MD, IBCLC Besides being an active member of INFORM Network, Professor Karall is responsible for inherited metabolic disorders in her current position as a Consultant to the Department for Child and Adolescent Medicine at Medical University of Innsbruck. FAOD dietary research as well as other treatment options, such as anaplerotic therapies, are her primary areas of focus. Professor Karall’s training included neuropediatrics and neonatology / pediatric intensive care, and she is an International board-certified Lactation Consultant. ## 11:00 am July 25 @ 11:00 am - 12:00 pm ### [ Pregnancies in Women With Long-Chain Fatty Acid Oxidation Disorders ](# "Pregnancies in Women With Long-Chain Fatty Acid Oxidation Disorders") Presented by: Sarah Grünert, MD ## Pregnancies in Women With Long-Chain Fatty Acid Oxidation Disorders July 25 @ 11:00 am – 12:00 pm As more women with lcFAODs are now of child-bearing age, questions of safety have arisen. Dr. Grunert will discuss an international study, in which scientists and clinicians collected data on 89 pregnancies in 39 women with lcFAODs. Their current data shows that the outcome of pregnancies in lcFAOD patients was generally favorable, despite a significant risk of metabolic decompensation during pregnancy and the postpartum period. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) #### About the Speaker ![Sarah Grünert, MD](https://www.mitoaction.org/wp-content/uploads/2026/05/Sarah-Grunert-Portrait-600x600.webp "Sarah Grünert, MD") ##### Sarah Grünert, MD Prof. Dr. Sarah Grünert is a pediatric metabolic specialist working at the University Children's Hospital Freiburg and associate professor of the Medical Faculty of the University Freiburg. After completing her medical studies in Freiburg, Innsbruck, London and Oxford, she performed her fellowship in Pediatrics at the University Medical Centre in Freiburg, Germany. In 2011, she completed a postdoctoral research fellowship at the University Children's Hospital Zürich, Switzerland. Her main clinical and research interests are fatty acid oxidation defects, hepatic glycogen storage diseases, and disorders of ketone body metabolism. She also is subnetwork coordinator for these diseases in the European Reference Network for Hereditary Metabolic Disorders (MetabERN). ## 12:00 pm July 25 @ 12:00 pm - 12:30 pm ### [ Lunch Break ](# "Lunch Break") ## Lunch Break July 25 @ 12:00 pm – 12:30 pm [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) ## 12:30 pm July 25 @ 12:30 pm - 1:15 pm ### [ FAOD Updates ](# "FAOD Updates") Presented by: Jerry Vockley, MD, PhD, FACMG ## FAOD Updates July 25 @ 12:30 pm – 1:15 pm Dr. Vockley will share current treatments and potential therapies in the FAOD community, with our yearly, “FAOD Updates!” [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) #### About the Speaker ![Jerry Vockley, MD, PhD, FACMG](https://www.mitoaction.org/wp-content/uploads/2023/10/Jerry-Vockley-Portrait-600x600.webp "Jerry Vockley, MD, PhD, FACMG") ##### Jerry Vockley, MD, PhD, FACMG Dr. Vockley received his undergraduate degree at Carnegie-Mellon University in Pittsburgh, Pennsylvania, and received his MD and PhD degrees in Medicine and Genetics from the University of Pennsylvania School of Medicine in Philadelphia, Pennsylvania. He completed his pediatric residency at the Denver Children’s Hospital, Denver, Colorado, and his postdoctoral fellowship in Human Genetic and Pediatrics at Yale University School of Medicine in New Haven, Connecticut. Before assuming his current position in Pittsburgh, Dr. Vockley was Chair of Medical Genetics in the Mayo Clinic School of Medicine. Dr. Vockley is internationally recognized as a leader in the field of inborn errors of metabolism. His current research focuses on mitochondrial energy metabolism, novel therapies for disorders of fatty acid oxidation and amino acid metabolism, and population genetics of the Plain communities in the United States. He has published over 400 peer reviewed scholarly articles and is the principal or Co-investigator on multiple NIH grants. Dr. Vockley also has an active clinical research program and participates in and consults on multiple gene therapy trials. Dr. Vockley has served on numerous national and international scientific boards including the Advisory Committee (to the Secretary of Health and Human Services) on Heritable Disorders in Newborns and Children where he was chair of the technology committee. He has been elected as a Fellow/Member of the American Association for the Advancement of Science, the Association of American Physicians, and the American Society for Clinical Investigation. Dr. Vockley is a Founding Fellow of the American College of Medical Genetics and Genomics, and currently serves on its board of directors. He is co-founder and co-chair of the International Network on Fatty Acid Oxidation Research and Therapy (INFORM). He has served as chair of the Pennsylvania State Newborn Screening Advisory Committee and is a past president of the Society for the Inherited Metabolic Disorders (SIMD). He is co-founder and editor of the SIMD North American Metabolic Academy. He provides support for numerous family advocacy groups including MitoAction, the United Mitochondrial Disease Foundation, the National PKU Association, and the Organic Acidemia Association. He has received the National Organization of Rare Diseases Scientific and Medical Trailblazer Rare Impact Award (2025) The Organic Acidemia Association Award of Excellence (2021), and the March of Dimes Champion for Babies Award (2015). July 25 @ 12:30 pm - 1:30 pm ### [ Teen Breakout Session ](# "Teen Breakout Session") ## Teen Breakout Session July 25 @ 12:30 pm – 1:30 pm Join Maddie Youtsey for a special time just for teens! If you are a teen with an FAOD or a teen sibling, come and join this special space! There will be lots of laughter, story telling, and connection! [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) ## 1:00 pm July 25 @ 1:15 pm - 1:30 pm ### [ Break ](# "Break") ## Break July 25 @ 1:15 pm – 1:30 pm [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) ## 1:30 pm July 25 @ 1:30 pm - 2:55 pm ### [ Emerging Genetic Therapies for FAODs ](# "Emerging Genetic Therapies for FAODs") Presented by: Jerry Vockley, MD, PhD, FACMG Melanie Gillingham, PhD, RD, LD Dwight Koeberl, MD, PhD ## Emerging Genetic Therapies for FAODs July 25 @ 1:30 pm – 2:55 pm New genetic therapies are under development for many rare diseases, and some have been approved by the FDA. However, none are approved for FAODs. This presentation will share ongoing research in three different laboratories aimed at developing mRNA and gene therapies for these disorders. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) #### About the Speaker ![Jerry Vockley, MD, PhD, FACMG](https://www.mitoaction.org/wp-content/uploads/2023/10/Jerry-Vockley-Portrait-600x600.webp "Jerry Vockley, MD, PhD, FACMG") ##### Jerry Vockley, MD, PhD, FACMG Dr. Vockley received his undergraduate degree at Carnegie-Mellon University in Pittsburgh, Pennsylvania, and received his MD and PhD degrees in Medicine and Genetics from the University of Pennsylvania School of Medicine in Philadelphia, Pennsylvania. He completed his pediatric residency at the Denver Children’s Hospital, Denver, Colorado, and his postdoctoral fellowship in Human Genetic and Pediatrics at Yale University School of Medicine in New Haven, Connecticut. Before assuming his current position in Pittsburgh, Dr. Vockley was Chair of Medical Genetics in the Mayo Clinic School of Medicine. Dr. Vockley is internationally recognized as a leader in the field of inborn errors of metabolism. His current research focuses on mitochondrial energy metabolism, novel therapies for disorders of fatty acid oxidation and amino acid metabolism, and population genetics of the Plain communities in the United States. He has published over 400 peer reviewed scholarly articles and is the principal or Co-investigator on multiple NIH grants. Dr. Vockley also has an active clinical research program and participates in and consults on multiple gene therapy trials. Dr. Vockley has served on numerous national and international scientific boards including the Advisory Committee (to the Secretary of Health and Human Services) on Heritable Disorders in Newborns and Children where he was chair of the technology committee. He has been elected as a Fellow/Member of the American Association for the Advancement of Science, the Association of American Physicians, and the American Society for Clinical Investigation. Dr. Vockley is a Founding Fellow of the American College of Medical Genetics and Genomics, and currently serves on its board of directors. He is co-founder and co-chair of the International Network on Fatty Acid Oxidation Research and Therapy (INFORM). He has served as chair of the Pennsylvania State Newborn Screening Advisory Committee and is a past president of the Society for the Inherited Metabolic Disorders (SIMD). He is co-founder and editor of the SIMD North American Metabolic Academy. He provides support for numerous family advocacy groups including MitoAction, the United Mitochondrial Disease Foundation, the National PKU Association, and the Organic Acidemia Association. He has received the National Organization of Rare Diseases Scientific and Medical Trailblazer Rare Impact Award (2025) The Organic Acidemia Association Award of Excellence (2021), and the March of Dimes Champion for Babies Award (2015). ![Melanie Gillingham, PhD, RD, LD](https://www.mitoaction.org/wp-content/uploads/2023/10/Photo-Melanie-Gillingham.webp "Melanie Gillingham, PhD, RD, LD") ##### Melanie Gillingham, PhD, RD, LD Dr. Melanie Gillingham’s research in the Department of Molecular and Medical Genetics has focused on various novel therapies for fatty acid oxidation disorders. For 20 years, Dr. Gillingham and her colleagues have conducted clinical trials in subjects with disorders in the fatty acid oxidation pathway. She has examined the effects of medium chain triglycerides (MCT) supplements prior to exercise on exercise performance among subjects with long-chain 3-hydroxyacyl-CoA dehydrogenase (LCHAD) deficiency receiving the Emmanuel Shapira Award for best paper in Molecular Genetics and Metabolism. The Gillingham lab has evaluated the effects of increased dietary protein on metabolic control and energy balance in subjects with LCHAD, carnitine palmitoyltransferase 2 (CPT-2) and very long-chain acylCoA dehydrogenase (VLCAD) deficiencies. In a separate study, Dr. Gillingham conducted supervised metabolic fasting studies in young children with a polymorphism of the CPT1A gene to determine if they have an altered fasting response similar to other fatty acid oxidation disorders. In 2014, a group of FAO researchers, under the leadership of Dr. Jerry Vockley, founded the International Network for Fatty Acid Oxidation Research and Management (INFORM), an international group working for the advancement of medical and nutrition therapies for fatty acid oxidation disorders ([www.informnetwork.org](http://www.informnetwork.org/)). Dr. Gillingham participates on the organizing committee of INFORM. Dr. Vockley and Dr. Gillingham completed a randomized trial to examine the effects of an odd-chain fatty acid supplement, triheptanion, on myopathy and cardiac function of patients with long-chain fatty acid oxidation disorders. This is the largest randomized controlled trial conducted in these disorders to date and was recently selected for the Garrod award by the Society for the Study of Inborn Errors of Metabolism (SSIEM). Dr. Gillingham has also conducted a series of studies examining the etiology of retinopathy in LCHAD and the role of diet in the progression of vision loss. Dr. Gillingham is currently conducting a larger natural history study of LCHAD retinopathy. ![Dwight Koeberl, MD, PhD](https://www.mitoaction.org/wp-content/uploads/2026/04/Dwight-Koeberl-Portrait-600x600.webp "Dwight Koeberl, MD, PhD") ##### Dwight Koeberl, MD, PhD Dr. Koeberl attended Carleton College, and then Mayo Medical School and Graduate School, before moving to UCSF for his pediatrics residency. He then completed fellowship training in Clinical and Biochemical Genetics at the University of Washington, before joining the Division of Medical Genetics in the Department of Pediatrics at Duke University in 1999. He serves as Medical Director for the Pediatrics Biochemical Genetics Laboratory and sees patients in the Metabolic Clinic. His research has focused on the development of new therapy for inherited metabolic disorders, including glycogen storage disease type Ia and Pompe disease. He initiated a clinical trial of AAV8 gene therapy for Pompe disease that is ongoing. His laboratory is currently developing genetic therapies for trifunctional protein deficiency and LCHAD deficiency. ## 2:30 pm July 25 @ 2:55 pm - 3:00 pm ### [ Break ](# "Break") ## Break July 25 @ 2:55 pm – 3:00 pm [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) ## 3:00 pm July 25 @ 3:00 pm - 4:00 pm ### [ Patient/Family Panel ](# "Patient/Family Panel") ## Patient/Family Panel July 25 @ 3:00 pm – 4:00 pm Patients and Caregivers from the FAOD community will have time to share their wisdom and lessons learned during their journey. They will tackle pre-prepared questions, and field questions during the panel discussion. If you would like to submit a question ahead of time please contact Stephanie Harry at sharry@mitoaction.org. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) ## 4:00 pm July 25 @ 4:00 pm - 4:30 pm ### [ Closing ](# "Closing") ## Closing July 25 @ 4:00 pm – 4:30 pm [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) - [ Previous Day ](https://www.mitoaction.org/calendar/2026-07-24/?shortcode=5b2a59d6 "Previous Day") - [ Next Day ](https://www.mitoaction.org/calendar/2026-07-26/?shortcode=5b2a59d6 "Next Day") Subscribe to calendar - [ Google Calendar ](https://www.google.com/calendar/render?cid=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-25%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-conference-session) - [ iCalendar ](webcal://www.mitoaction.org/?post_type=tribe_events&tribe-bar-date=2026-07-25&ical=1&eventDisplay=list&tribe_events_cat=imc-conference-session) - [ Outlook 365 ](https://outlook.office.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-25%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-conference-session&name=MitoAction+Events+for+July+25,+2026) - [ Outlook Live ](https://outlook.live.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-25%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-conference-session&name=MitoAction+Events+for+July+25,+2026) - [ Export .ics file ](https://www.mitoaction.org/calendar/2026-07-25/?shortcode=5b2a59d6&ical=1) - [ Export Outlook .ics file ](https://www.mitoaction.org/calendar/2026-07-25/?shortcode=5b2a59d6&outlook-ical=1#038;ical=1) ### **Schedule for Sunday, July 26, 2026** 8 events found. # Events for July 26, 2026 - [ ](https://www.mitoaction.org/calendar/2026-07-25/?shortcode=360c1549 "Previous day") - [ ](https://www.mitoaction.org/calendar/2026-07-27/?shortcode=360c1549 "Next day") [ Today](https://www.mitoaction.org/calendar/today/?attachment=admin-ajax.php&shortcode=360c1549) 2026-07-26 July 26, 2026 Select date. ## 1:00 pm July 26 @ 1:00 pm - 1:15 pm ### [ Welcome ](# "Welcome") Presented by: Kira Mann Stephanie Harry ## Welcome July 26 @ 1:00 pm – 1:15 pm [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) #### About the Speaker ![Kira Mann](https://www.mitoaction.org/wp-content/uploads/2023/10/Image-6-24-26-at-1236-PM.jpeg "Kira Mann") ##### Kira Mann Kira serves as CEO of MitoAction and champions the growth of the programs and services offered by MitoAction. Her priority is to ensure that each and every person affected by mitochondrial disease knows they are not alone and that the MitoAction team will be here every step of their journey. Kira is committed to stewarding key funding opportunities, strengthening the organization’s business development and governance and working with the community to increase MitoAction’s national impact and presence in the areas of aware- ness, education and advocacy. “I am honored to lead this incredible team who works tirelessly each and every day on behalf of the amazing community we serve. I love hearing from our families, and I welcome you to reach out, share your story and help ensure that MitoAction is doing everything we can to pro- vide the support and services that are most meaningful to you.” Contact Kira at or call 248-797-2399. ![Stephanie Harry](https://www.mitoaction.org/wp-content/uploads/2022/09/Stephanie-Harry-e1674068973953-600x600.jpg "Stephanie Harry") ##### Stephanie Harry Stephanie’s son was diagnosed in 2008 with LCHAD deficiency. She spent her son’s early years educating herself through research, journal articles, work groups, and clinicians. She worked alongside her son’s dietitian to publish a children’s book called “My Special Body” geared toward educating young children with LC-FAODs. She is passionate about education, mentorship, and advocacy. In 2022 Stephanie joined the MitoAction team to support the greater mitochondrial community. “I am so excited to be a part of the MitoAction team! My goal is to always create a safe inquisitive space where people feel loved, listened to and have continued access to meaningful resources. I look forward to connecting with each family and patient, and feel honored to walk this journey with you!” Contact Stephanie at . July 26 @ 1:15 pm - 2:00 pm ### [ Cultivating a New Normal: A Guide for New Families with FAODs ](# "Cultivating a New Normal: A Guide for New Families with FAODs") Presented by: Georgianne Arnold, MD, Phd Stephanie Harry ## Cultivating a New Normal: A Guide for New Families with FAODs July 26 @ 1:15 pm – 2:00 pm When a child is diagnosed with an FAOD the world of a caregiver drastically changes. This presentation will draw on the insight of both a long-standing geneticist in the FAOD community and parent who is 17 years into the journey. Together they will explore topics that families face who are new to the journey. If you have a newborn through high schooler, this session is for you! [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) #### About the Speaker ![Georgianne Arnold, MD, Phd](https://www.mitoaction.org/wp-content/uploads/2023/10/Dr.-Georgianne-Arnold-Portrait-–-2025-06-18-600x600.webp "Georgianne Arnold, MD, Phd") ##### Georgianne Arnold, MD, Phd Dr. Arnold graduated from Indiana University with degrees in biology and chemistry, and has a Masters degree in Medical Genetics from Indiana University-Purdue University at Indianapolis. She graduated from medical school from Upstate Medical University, and completed a residency in Pediatrics at Northwestern University. Her genetics training was at the University of Colorado and she is boarded in Clinical Biochemical Genetics and Clinical Genetics. Dr. Arnold was Clinical Director and most recently Clinical Research Director at the University of Pittsburgh. She is an Emeritus Professor, and a consultant with VMP Genetics. Dr. Arnold is the past president of the Society for Inherited Metabolic Disorders, and recipient of the Shapira award for the best member’s paper in Molecular Genetics and Metabolism. She has a long-standing interest in fatty acid oxidation disorders, working with Dr. Vockley for 13 years. ![Stephanie Harry](https://www.mitoaction.org/wp-content/uploads/2022/09/Stephanie-Harry-e1674068973953-600x600.jpg "Stephanie Harry") ##### Stephanie Harry Stephanie’s son was diagnosed in 2008 with LCHAD deficiency. She spent her son’s early years educating herself through research, journal articles, work groups, and clinicians. She worked alongside her son’s dietitian to publish a children’s book called “My Special Body” geared toward educating young children with LC-FAODs. She is passionate about education, mentorship, and advocacy. In 2022 Stephanie joined the MitoAction team to support the greater mitochondrial community. “I am so excited to be a part of the MitoAction team! My goal is to always create a safe inquisitive space where people feel loved, listened to and have continued access to meaningful resources. I look forward to connecting with each family and patient, and feel honored to walk this journey with you!” Contact Stephanie at . ## 2:00 pm July 26 @ 2:00 pm - 3:00 pm ### [ From Supplements to Weight Loss – Maximizing Your Nutrition Health ](# "From Supplements to Weight Loss –  Maximizing Your Nutrition Health") Presented by: Melanie Gillingham, PhD, RD, LD ## From Supplements to Weight Loss – Maximizing Your Nutrition Health July 26 @ 2:00 pm – 3:00 pm This presentation will review the diet records and current supplements from participants in the Natural History of LCHADD Retinopathy study. Then Dr. Gillingham will discuss how to maximize micronutrient intake, what is the right amount of protein, and how to think about body weight and weight loss while also managing an FAOD. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) #### About the Speaker ![Melanie Gillingham, PhD, RD, LD](https://www.mitoaction.org/wp-content/uploads/2023/10/Photo-Melanie-Gillingham.webp "Melanie Gillingham, PhD, RD, LD") ##### Melanie Gillingham, PhD, RD, LD Dr. Melanie Gillingham’s research in the Department of Molecular and Medical Genetics has focused on various novel therapies for fatty acid oxidation disorders. For 20 years, Dr. Gillingham and her colleagues have conducted clinical trials in subjects with disorders in the fatty acid oxidation pathway. She has examined the effects of medium chain triglycerides (MCT) supplements prior to exercise on exercise performance among subjects with long-chain 3-hydroxyacyl-CoA dehydrogenase (LCHAD) deficiency receiving the Emmanuel Shapira Award for best paper in Molecular Genetics and Metabolism. The Gillingham lab has evaluated the effects of increased dietary protein on metabolic control and energy balance in subjects with LCHAD, carnitine palmitoyltransferase 2 (CPT-2) and very long-chain acylCoA dehydrogenase (VLCAD) deficiencies. In a separate study, Dr. Gillingham conducted supervised metabolic fasting studies in young children with a polymorphism of the CPT1A gene to determine if they have an altered fasting response similar to other fatty acid oxidation disorders. In 2014, a group of FAO researchers, under the leadership of Dr. Jerry Vockley, founded the International Network for Fatty Acid Oxidation Research and Management (INFORM), an international group working for the advancement of medical and nutrition therapies for fatty acid oxidation disorders ([www.informnetwork.org](http://www.informnetwork.org/)). Dr. Gillingham participates on the organizing committee of INFORM. Dr. Vockley and Dr. Gillingham completed a randomized trial to examine the effects of an odd-chain fatty acid supplement, triheptanion, on myopathy and cardiac function of patients with long-chain fatty acid oxidation disorders. This is the largest randomized controlled trial conducted in these disorders to date and was recently selected for the Garrod award by the Society for the Study of Inborn Errors of Metabolism (SSIEM). Dr. Gillingham has also conducted a series of studies examining the etiology of retinopathy in LCHAD and the role of diet in the progression of vision loss. Dr. Gillingham is currently conducting a larger natural history study of LCHAD retinopathy. ## 3:00 pm July 26 @ 3:00 pm - 4:00 pm ### [ Beyond Traditional Physical Therapy: Exploring New Paths in Metabolic Care ](# "Beyond Traditional Physical Therapy: Exploring New Paths in Metabolic Care") Presented by: Pamela Tucker, DPT, PT Brian Weber, DPT, CFMT, FFMT, FAFS, FAAOMPT ## Beyond Traditional Physical Therapy: Exploring New Paths in Metabolic Care July 26 @ 3:00 pm – 4:00 pm This session introduces caregivers and patients to alternative therapy options—including aquatic therapy, hippotherapy, and emerging modalities like red light therapy and compression recovery systems. Presenters will explain how these approaches may support strength, endurance, and overall function, while offering practical guidance on safety, access, and real-world use. Attendees will leave with a clearer understanding of how to thoughtfully incorporate these therapies into everyday care. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) #### About the Speaker ![Pamela Tucker, DPT, PT](https://www.mitoaction.org/wp-content/uploads/2023/10/Pamela-Tuicker-Portrait-–-2025-06-18-600x600.webp "Pamela Tucker, DPT, PT") ##### Pamela Tucker, DPT, PT Dr. Pamela Tucker, PT, DPT, is a physical therapist at Bethany Children's Health Center, where she practices on the medical rehabilitation unit, specializing in the care of medically complex pediatric patients. She earned her undergraduate degree from Duke University and her doctorate in Physical Therapy from Franklin Pierce University. Dr. Tucker brings a diverse clinical background spanning acute care, inpatient rehabilitation, and outpatient physical therapy, with experience treating infant, pediatric, and adult populations. Her clinical expertise focuses on neurorehabilitation, functional mobility, and optimizing participation and independence across the continuum of care. A recognized national and international speaker, Dr. Tucker has contributed to the advancement of rehabilitation practice through multiple peer-reviewed publications and professional presentations. She is committed to translating evidence into practice and advancing interdisciplinary care for individuals with complex medical and neurological conditions. Her research interests include physical therapy interventions for children with inherited metabolic disorders, aquatic physical therapy, concussion management, and robotic-assisted mobility training. Dr. Tucker is currently working on a physical therapy protocol to recover from rhabdomyolysis. ![Brian Weber, DPT, CFMT, FFMT, FAFS, FAAOMPT](https://www.mitoaction.org/wp-content/uploads/2026/05/Brian-Weber-Portrait-600x600.webp "Brian Weber, DPT, CFMT, FFMT, FAFS, FAAOMPT") ##### Brian Weber, DPT, CFMT, FFMT, FAFS, FAAOMPT Brian Weber, DPT, CFMT, FFMT, FAFS, FAAOMPT is the founder of KINECIO Physical Therapy in Woodbury, Minnesota, where he specializes in second opinions and complex case management. Dr. Weber received his Doctorate in Physical Therapy from the University of Iowa and completed fellowships in Functional Manual Therapy through the Institute of Physical Art and Applied Functional Science through the Gray Institute. His work focuses on integrating advanced manual therapy, movement science, and whole-body clinical reasoning to improve movement, performance, and quality of life. ## 4:00 pm July 26 @ 4:00 pm - 4:45 pm ### [ Development of a Cell-in-a-Dish Model to Study Peripheral Neuropathy in LCHADD ](# "Development of a Cell-in-a-Dish Model to Study Peripheral Neuropathy in LCHADD") Presented by: Chen Zhang ## Development of a Cell-in-a-Dish Model to Study Peripheral Neuropathy in LCHADD July 26 @ 4:00 pm – 4:45 pm Scientists are aiming to better understand the mechanisms underlying peripheral nervous system dysfunction in LCHADD/MTPD. The limited accessibility of human neural tissues and the lack of disease-specific experimental models, mechanistic studies of peripheral neuropathy (PN) in LCHADD/MTPD remain challenging. In this presentation, Chen Zhang will introduce and explain a cell-in-a-dish platform, combining human stem cell-derived neural cells and primary rat cells to investigate the interactions/effects of circulating metabolites on neural cells and sensory neuron–Schwann cell itnteractions. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) #### About the Speaker ![Chen Zhang](https://www.mitoaction.org/wp-content/uploads/2026/05/Chen-Zhang-Portrait-600x600.webp "Chen Zhang") ##### Chen Zhang Chen Zhang received her Master’s degree in Biochemistry and Molecular Biology from the University of Chinese Academy of Sciences. Prior to joining Aarhus University, she worked as a research assistant at Qilu Hospital, China, where her research focused on mitochondrial diseases. Chen Zhang is currently a PhD student in the Department of Clinical Medicine at Aarhus University, Denmark. Her research centers on developing and applying the “LCHADD PN-in-a-dish” model in combination with biochemical analyses and multi-omics approaches to investigate fatty acid oxidation-related neuropathy. Through this work, she aims to advance the understanding of peripheral neuropathy in LCHADD and related metabolic disorders, including diabetes, and to support the development of future therapeutic strategies. ## 4:30 pm July 26 @ 4:45 pm - 5:00 pm ### [ Break ](# "Break") ## Break July 26 @ 4:45 pm – 5:00 pm [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) ## 5:00 pm July 26 @ 5:00 pm - 6:00 pm ### [ Clinician Panel ](# "Clinician Panel") Presented by: Jerry Vockley, MD, PhD, FACMG Melanie Gillingham, PhD, RD, LD Georgianne Arnold, MD, Phd Pamela Tucker, DPT, PT ## Clinician Panel July 26 @ 5:00 pm – 6:00 pm Bring your questions to ask during the Q&A session, or feel free to submit them ahead of time to Stephanie Harry at . [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) #### About the Speaker ![Jerry Vockley, MD, PhD, FACMG](https://www.mitoaction.org/wp-content/uploads/2023/10/Jerry-Vockley-Portrait-600x600.webp "Jerry Vockley, MD, PhD, FACMG") ##### Jerry Vockley, MD, PhD, FACMG Dr. Vockley received his undergraduate degree at Carnegie-Mellon University in Pittsburgh, Pennsylvania, and received his MD and PhD degrees in Medicine and Genetics from the University of Pennsylvania School of Medicine in Philadelphia, Pennsylvania. He completed his pediatric residency at the Denver Children’s Hospital, Denver, Colorado, and his postdoctoral fellowship in Human Genetic and Pediatrics at Yale University School of Medicine in New Haven, Connecticut. Before assuming his current position in Pittsburgh, Dr. Vockley was Chair of Medical Genetics in the Mayo Clinic School of Medicine. Dr. Vockley is internationally recognized as a leader in the field of inborn errors of metabolism. His current research focuses on mitochondrial energy metabolism, novel therapies for disorders of fatty acid oxidation and amino acid metabolism, and population genetics of the Plain communities in the United States. He has published over 400 peer reviewed scholarly articles and is the principal or Co-investigator on multiple NIH grants. Dr. Vockley also has an active clinical research program and participates in and consults on multiple gene therapy trials. Dr. Vockley has served on numerous national and international scientific boards including the Advisory Committee (to the Secretary of Health and Human Services) on Heritable Disorders in Newborns and Children where he was chair of the technology committee. He has been elected as a Fellow/Member of the American Association for the Advancement of Science, the Association of American Physicians, and the American Society for Clinical Investigation. Dr. Vockley is a Founding Fellow of the American College of Medical Genetics and Genomics, and currently serves on its board of directors. He is co-founder and co-chair of the International Network on Fatty Acid Oxidation Research and Therapy (INFORM). He has served as chair of the Pennsylvania State Newborn Screening Advisory Committee and is a past president of the Society for the Inherited Metabolic Disorders (SIMD). He is co-founder and editor of the SIMD North American Metabolic Academy. He provides support for numerous family advocacy groups including MitoAction, the United Mitochondrial Disease Foundation, the National PKU Association, and the Organic Acidemia Association. He has received the National Organization of Rare Diseases Scientific and Medical Trailblazer Rare Impact Award (2025) The Organic Acidemia Association Award of Excellence (2021), and the March of Dimes Champion for Babies Award (2015). ![Melanie Gillingham, PhD, RD, LD](https://www.mitoaction.org/wp-content/uploads/2023/10/Photo-Melanie-Gillingham.webp "Melanie Gillingham, PhD, RD, LD") ##### Melanie Gillingham, PhD, RD, LD Dr. Melanie Gillingham’s research in the Department of Molecular and Medical Genetics has focused on various novel therapies for fatty acid oxidation disorders. For 20 years, Dr. Gillingham and her colleagues have conducted clinical trials in subjects with disorders in the fatty acid oxidation pathway. She has examined the effects of medium chain triglycerides (MCT) supplements prior to exercise on exercise performance among subjects with long-chain 3-hydroxyacyl-CoA dehydrogenase (LCHAD) deficiency receiving the Emmanuel Shapira Award for best paper in Molecular Genetics and Metabolism. The Gillingham lab has evaluated the effects of increased dietary protein on metabolic control and energy balance in subjects with LCHAD, carnitine palmitoyltransferase 2 (CPT-2) and very long-chain acylCoA dehydrogenase (VLCAD) deficiencies. In a separate study, Dr. Gillingham conducted supervised metabolic fasting studies in young children with a polymorphism of the CPT1A gene to determine if they have an altered fasting response similar to other fatty acid oxidation disorders. In 2014, a group of FAO researchers, under the leadership of Dr. Jerry Vockley, founded the International Network for Fatty Acid Oxidation Research and Management (INFORM), an international group working for the advancement of medical and nutrition therapies for fatty acid oxidation disorders ([www.informnetwork.org](http://www.informnetwork.org/)). Dr. Gillingham participates on the organizing committee of INFORM. Dr. Vockley and Dr. Gillingham completed a randomized trial to examine the effects of an odd-chain fatty acid supplement, triheptanion, on myopathy and cardiac function of patients with long-chain fatty acid oxidation disorders. This is the largest randomized controlled trial conducted in these disorders to date and was recently selected for the Garrod award by the Society for the Study of Inborn Errors of Metabolism (SSIEM). Dr. Gillingham has also conducted a series of studies examining the etiology of retinopathy in LCHAD and the role of diet in the progression of vision loss. Dr. Gillingham is currently conducting a larger natural history study of LCHAD retinopathy. ![Georgianne Arnold, MD, Phd](https://www.mitoaction.org/wp-content/uploads/2023/10/Dr.-Georgianne-Arnold-Portrait-–-2025-06-18-600x600.webp "Georgianne Arnold, MD, Phd") ##### Georgianne Arnold, MD, Phd Dr. Arnold graduated from Indiana University with degrees in biology and chemistry, and has a Masters degree in Medical Genetics from Indiana University-Purdue University at Indianapolis. She graduated from medical school from Upstate Medical University, and completed a residency in Pediatrics at Northwestern University. Her genetics training was at the University of Colorado and she is boarded in Clinical Biochemical Genetics and Clinical Genetics. Dr. Arnold was Clinical Director and most recently Clinical Research Director at the University of Pittsburgh. She is an Emeritus Professor, and a consultant with VMP Genetics. Dr. Arnold is the past president of the Society for Inherited Metabolic Disorders, and recipient of the Shapira award for the best member’s paper in Molecular Genetics and Metabolism. She has a long-standing interest in fatty acid oxidation disorders, working with Dr. Vockley for 13 years. ![Pamela Tucker, DPT, PT](https://www.mitoaction.org/wp-content/uploads/2023/10/Pamela-Tuicker-Portrait-–-2025-06-18-600x600.webp "Pamela Tucker, DPT, PT") ##### Pamela Tucker, DPT, PT Dr. Pamela Tucker, PT, DPT, is a physical therapist at Bethany Children's Health Center, where she practices on the medical rehabilitation unit, specializing in the care of medically complex pediatric patients. She earned her undergraduate degree from Duke University and her doctorate in Physical Therapy from Franklin Pierce University. Dr. Tucker brings a diverse clinical background spanning acute care, inpatient rehabilitation, and outpatient physical therapy, with experience treating infant, pediatric, and adult populations. Her clinical expertise focuses on neurorehabilitation, functional mobility, and optimizing participation and independence across the continuum of care. A recognized national and international speaker, Dr. Tucker has contributed to the advancement of rehabilitation practice through multiple peer-reviewed publications and professional presentations. She is committed to translating evidence into practice and advancing interdisciplinary care for individuals with complex medical and neurological conditions. Her research interests include physical therapy interventions for children with inherited metabolic disorders, aquatic physical therapy, concussion management, and robotic-assisted mobility training. Dr. Tucker is currently working on a physical therapy protocol to recover from rhabdomyolysis. ## 6:00 pm July 26 @ 6:00 pm - 6:30 pm ### [ Closing ](# "Closing") ## Closing July 26 @ 6:00 pm – 6:30 pm [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) - [ Previous Day ](https://www.mitoaction.org/calendar/2026-07-25/?shortcode=360c1549 "Previous Day") - [ Next Day ](https://www.mitoaction.org/calendar/2026-07-27/?shortcode=360c1549 "Next Day") Subscribe to calendar - [ Google Calendar ](https://www.google.com/calendar/render?cid=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-26%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-conference-session) - [ iCalendar ](webcal://www.mitoaction.org/?post_type=tribe_events&tribe-bar-date=2026-07-26&ical=1&eventDisplay=list&tribe_events_cat=imc-conference-session) - [ Outlook 365 ](https://outlook.office.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-26%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-conference-session&name=MitoAction+Events+for+July+26,+2026) - [ Outlook Live ](https://outlook.live.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-26%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-conference-session&name=MitoAction+Events+for+July+26,+2026) - [ Export .ics file ](https://www.mitoaction.org/calendar/2026-07-26/?shortcode=360c1549&ical=1) - [ Export Outlook .ics file ](https://www.mitoaction.org/calendar/2026-07-26/?shortcode=360c1549&outlook-ical=1#038;ical=1) ## Registration is Now Live! Register now for the 2026 International Metabolic Conference For Families & Individuals Impacted by Fatty Acid Oxidation Disorders! [Register Now!](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) --- ### [Matthew Harty Camper Fund Scholarship](https://www.mitoaction.org/programs-support/mitoaction-programs/mhcf/scholarship/) **Published:** July 19, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") *2026 Scholarship Applications are now CLOSED. Thank you to all applicants!* **Applications will reopen on April 1, 2027!** The Matthew Harty Scholarship was established in 2015 to honor the life of Matthew Harty, a North Andover, MA, boy who passed away from mitochondrial disease just days after his 8th birthday. Since it’s founding, MitoAction has awarded more than $200,000 in scholarships. The Matthew Harty Scholarship will be awarded to high school seniors or currently enrolled college students with a diagnosis of mitochondrial disease. Students may apply by completing the online application (click “Apply Now” button above to access the application) and writing a one-page essay. The essay must include how the money will be used to either further their educational studies or how it may be used to lessen the burden on managing their affliction to achieve their educational goals. Matthew, the son of Sarah and Paul Harty, was an amazing little boy whose legacy will live on through these scholarship recipients. ### Details & Contact Information - **Address** – PO Box 310, Novi, MI 48376 - **Phone** – 888-MITOACTION (648-6228) - **Email** – scholarship@mitoaction.org - **Website** – www.mitoaction.org/scholarship - **Deadline** – May 31, 2026 - **Maximum Award** – $2,500 ### Qualification Criteria - Must be a high school senior or currently enrolled college student - Must include a letter of support from physician or healthcare provider who can verify the mitochondrial disease diagnosis - Must include photo with submission - Essay required – must address the following question: *How will the Matthew Harty Scholarship help you succeed in college, and how has mitochondrial disease affected your life and your education in a way that can help you to be a source of inspiration to others struggling with the disease?* --- ### [Do Not Sell My Personal Information](https://www.mitoaction.org/do-not-track/) **Published:** July 2, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Please fill out the form below if you wish to remove yourself from our records. Leave this field empty First Name\* Last Name\* Email\* Submit Request --- ### [Cookie Policy](https://www.mitoaction.org/cookie-policy/) **Published:** June 25, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This page provides comprehensive information about how we use cookies on our website to enhance your browsing experience, improve website performance, and deliver personalized content. Cookies are small text files that are stored on your device when you visit our site. They help us understand how visitors interact with our website, allowing us to offer a smoother and more efficient user experience. In the table below, you will find detailed information about each type of cookie we use, their purpose, and how long they remain on your device. We are committed to respecting your privacy and providing transparency about the data we collect through cookies. For more information on how we handle your personal data, please see our [Privacy Policy.](https://www.mitoaction.org/privacy-policy/) ## Essential Essential cookies enable basic functions and are necessary for the proper function of the website. NameDescriptionDurationwpconsent\_preferencesThis cookie is used to store the user's cookie consent preferences.30 days### CloudFlare CloudFlare provides web performance and security solutions, enhancing site speed and protecting against threats. [Learn more](https://developers.cloudflare.com/fundamentals/reference/policies-compliances/cloudflare-cookies/)NameDescriptionDurationcf\_ob\_infoThe cf\_ob\_info cookie provides information on: The HTTP Status Code returned by the origin web server. The Ray ID of the original failed request. The data center serving the trafficsessioncf\_use\_obThe cf\_use\_ob cookie informs Cloudflare to fetch the requested resource from the Always Online cache on the designated port. Applicable values are: 0, 80, and 443. The cf\_ob\_info and cf\_use\_ob cookies are persistent cookies that expire after 30 seconds.session\_\_cfwaitingroomThe \_\_cfwaitingroom cookie is only used to track visitors that access a waiting room enabled host and path combination for a zone. Visitors using a browser that does not accept cookies cannot visit the host and path combination while the waiting room is active.sessioncf\_chl\_rc\_iThese cookies are for internal use which allows Cloudflare to identify production issues on clients.sessioncf\_chl\_rc\_niThese cookies are for internal use which allows Cloudflare to identify production issues on clients.sessioncf\_chl\_rc\_mThese cookies are for internal use which allows Cloudflare to identify production issues on clients.session\_\_cfruidUsed by the content network, Cloudflare, to identify trusted web traffic.session\_\_cf\_bmCloudflare's bot products identify and mitigate automated traffic to protect your site from bad bots. Cloudflare places the \_\_cf\_bm cookie on End User devices that access Customer sites that are protected by Bot Management or Bot Fight Mode. The \_\_cf\_bm cookie is necessary for the proper functioning of these bot solutions.session\_\_cflbWhen enabling session affinity with Cloudflare Load Balancer, Cloudflare sets a \_\_cflb cookie with a unique value on the first response to the requesting client. Cloudflare routes future requests to the same origin, optimizing network resource usage. In the event of a failover, Cloudflare sets a new \_\_cflb cookie to direct future requests to the failover pool.session\_cfuvidThe \_cfuvid cookie is only set when a site uses this option in a Rate Limiting Rule, and is only used to allow the Cloudflare WAF to distinguish individual users who share the same IP address.sessioncf\_clearanceWhether a CAPTCHA or Javascript challenge has been solved.session\_\_cfseqSequence rules uses cookies to track the order of requests a user has made and the time between requests and makes them available via Cloudflare Rules. This allows you to write rules that match valid or invalid sequences. The specific cookies used to validate sequences are called sequence cookies.session### Google Tag Manager Google Tag Manager simplifies the management of marketing tags on your website without code changes. NameDescriptionDurationcookiePreferencesRegisters cookie preferences of a user2 yearstdRegisters statistical data on users' behaviour on the website. Used for internal analytics by the website operator.session### MitoAction Website [Learn more](https://www.mitoaction.org/privacy-policy/)NameDescriptionDurationPHPSESSID### UserWay UserWay is an AI-powered accessibility widget that scans a website for WCAG and ADA accessibility issues and gives visitors on-page tools to adjust contrast, font size, navigation, and other display settings. [Learn more](https://userway.org/privacy/)NameDescriptionDurationuw-uidSet by the UserWay accessibility widget to maintain a session-scoped identifier while the widget is active on the page.sessionuserway-s\*Set by the UserWay accessibility widget to support its functionality while active on the page.session### WooCommerce WooCommerce is a customizable eCommerce platform for building online stores using WordPress. NameDescriptionDurationwp\_woocommerce\_session\_Contains a unique code for each customer so that it knows where to find the cart data in the database for each customer.2 dayswoocommerce\_recently\_viewedPowers the Recent Viewed Products widgetsessionstore\_noticeAllows customers to dismiss the Store Notice.sessionwoocommerce\_snooze\_suggestions\_\_Allows dashboard users to dismiss Marketplace suggestions, if enabled.2 dayswoocommerce\_dismissed\_suggestions\_\_Count of suggestion dismissals, if enabled.1 monthwoocommerce\_cart\_hashHelps WooCommerce determine when cart contents/data changes.sessionwoocommerce\_items\_in\_cartHelps WooCommerce determine when cart contents/data changes.session### WooCommerce / Jetpack WooCommerce and Jetpack integrate to enhance your online store with powerful features and performance optimization. NameDescriptionDurationtk\_qstk\_aiStores a randomly-generated anonymous ID. This is only used within the dashboard (/wp-admin) area and is used for usage tracking, if enabled.session### WP Consent API WP Consent API is a plugin that standardizes the communication of accepted consent categories between plugins. NameDescriptionDurationwp\_consent\_statistics-anonymous4 weekswp\_consent\_statistics4 weekswp\_consent\_preferences4 weekswp\_consent\_marketing4 weekswp\_consent\_functional4 weekswp\_consent\_{category} Stores your consent preference for a specific cookie category (e.g., functional, marketing). It ensures consistent consent management across WordPress plugins supporting the WP Consent API. 30 days## Statistics Statistics cookies collect information anonymously. This information helps us understand how visitors use our website. ### Google Analytics Google Analytics is a powerful tool that tracks and analyzes website traffic for informed marketing decisions. [Learn more](https://policies.google.com/privacy)NameDescriptionDurationsbjs\_current\_add\_gcl\_au3 months\_\_utmxUsed to determine whether a user is included in an A / B or Multivariate test.18 months\_gaID used to identify users2 years\_galiUsed by Google Analytics to determine which links on a page are being clicked30 seconds\_ga\_ID used to identify users2 years\_gidID used to identify users for 24 hours after last activity24 hours\_gatUsed to monitor number of Google Analytics server requests when using Google Tag Manager1 minute\_gac\_Contains information related to marketing campaigns of the user. These are shared with Google AdWords / Google Ads when the Google Ads and Google Analytics accounts are linked together.90 days\_\_utmaID used to identify users and sessions2 years after last activity\_\_utmtUsed to monitor number of Google Analytics server requests10 minutes\_\_utmbUsed to distinguish new sessions and visits. This cookie is set when the GA.js javascript library is loaded and there is no existing \_\_utmb cookie. The cookie is updated every time data is sent to the Google Analytics server.30 minutes after last activity\_\_utmcUsed only with old Urchin versions of Google Analytics and not with GA.js. Was used to distinguish between new sessions and visits at the end of a session.End of session (browser)\_\_utmzContains information about the traffic source or campaign that directed user to the website. The cookie is set when the GA.js javascript is loaded and updated when data is sent to the Google Anaytics server6 months after last activity\_\_utmvContains custom information set by the web developer via the \_setCustomVar method in Google Analytics. This cookie is updated every time new data is sent to the Google Analytics server.2 years after last activity### Heap Analytics NameDescriptionDuration\_hp2\_props.1566116007\_hp2\_id.1566116007### Instagram A popular social media platform for sharing photos and videos, connecting users through visual storytelling. NameDescriptionDurationig\_didThis is a targeting cookie used to track Instagram user visits.9 yearsig\_cbThis cookie enables the correct functionality of the Instagram plugins, such as embedded Instagram posts9 yearsds\_user\_idThis is a targeting cookie used to optimize advertising on Instagram.3 monthsmidThis is a functionality cookie used to optimize the use of Instagram on the website9 yearsfbm\_This is a targeting cookie used to track Instagram user visits.1 yearshbidThis is a targeting cookie used to optimize advertising on Instagram.1 yearshbtsThis is a targeting cookie used to optimize advertising on Instagram.1 yearsessionidThis is a performance cookie used to collect data about people logging in and out of the website.1 year### Microsoft Clarity Clarity is a web analytics service that tracks and reports website traffic. [Learn more](https://clarity.microsoft.com/privacy)NameDescriptionDuration\_clckANONCHKIndicates whether MUID is transferred to ANID, a cookie used for advertising. Clarity doesn't use ANID and so this is always set to 0.SessionCLIDIdentifies the first-time Clarity saw this user on any site using Clarity.12 months\_clskConnects multiple page views by a user into a single Clarity session recording.12 months\_clckPersists the Clarity User ID and preferences, unique to that site is attributed to the same user ID.12 months### Optimizely NameDescriptionDurationoptimizelySessionoptimizelyEndUserId### WooCommerce Sourcebuster SourceBuster is used by WooCommerce for order attribution based on user source. NameDescriptionDurationsbjs\_udatasbjs\_sessionsbjs\_migrationssbjs\_first\_addsbjs\_firstsbjs\_sessionThe number of page views in this session and the current page path30 minutessbjs\_udataInformation about the visitor’s user agent, such as IP, the browser, and the device typesessionsbjs\_firstTraffic origin information for the visitor’s first visit to your store (only applicable if the visitor returns before the session expires)sessionsbjs\_currentTraffic origin information for the visitor’s current visit to your storesessionsbjs\_first\_addTimestamp, referring URL, and entry page for your visitor’s first visit to your store (only applicable if the visitor returns before the session expires)sessionsbjs\_current\_addTimestamp, referring URL, and entry page for your visitor’s current visit to your storesessionsbjs\_migrationsTechnical data to help with migrations between different versions of the tracking featuresession## Marketing Marketing cookies are used to follow visitors to websites. The intention is to show ads that are relevant and engaging to the individual user. NameDescriptionDurationsbjs\_currentSession### Facebook Pixel Facebook Pixel is a web analytics service that tracks and reports website traffic. [Learn more](https://www.facebook.com/policy.php)NameDescriptionDuration\_fbcUsed to track the last session visit.12 months\_fbpUsed to track the user across multiple sessions.3 monthsfrUsed to track the user across multiple sessions.3 months### Instagram A popular social media platform for sharing photos and videos, connecting users through visual storytelling. NameDescriptionDurationds\_user\_idThis is a targeting cookie used to optimize advertising on Instagram.3 monthsmidThis is a functionality cookie used to optimize the use of Instagram on the website9 yearsfbm\_This is a targeting cookie used to track Instagram user visits.1 yearshbtsThis is a targeting cookie used to optimize advertising on Instagram.1 yearsessionidThis is a performance cookie used to collect data about people logging in and out of the website.1 yearig\_didThis is a targeting cookie used to track Instagram user visits.9 yearsig\_cbThis cookie enables the correct functionality of the Instagram plugins, such as embedded Instagram posts9 years --- ### [Thanks for Registering with MyMito](https://www.mitoaction.org/mymito/thanks-for-registering-with-mymito/) **Published:** August 23, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Thank you for registering for MyMito. Please check your email for further instructions on downloading the app, and what to do once you’re in!** If you have any questions, please don’t hesitate to contact us at . --- ### [Sponsors](https://www.mitoaction.org/events/internationalmetabolicconference/sponsors/) **Published:** January 6, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # Sponsors & Exhibitors Special thanks to the sponsors of the International Metabolic Conference for Fatty Acid Oxidation Disorders. ### Presenting Sponsor ![](https://www.mitoaction.org/wp-content/uploads/2024/04/Ultragenyx-1024x423.png) ### Gold Sponsor ### Silver Sponsor ### Bronze Sponsor ![](https://www.mitoaction.org/wp-content/uploads/2026/05/Nutricia-Logo-1024x340.webp) ![](https://www.mitoaction.org/wp-content/uploads/2026/05/Protocol-Logo-1-1024x293.webp) ### Exhibitors ![](https://www.mitoaction.org/wp-content/uploads/2026/05/In-Vitro-Diagnostic-Solutions-Logo-1024x399.webp) ![](https://mitoaction.local/wp-content/uploads/2024/12/Sponsor-Logo-CARE3.webp) ## Registration is Now Live! Register now for the 2026 International Metabolic Conference For Families & Individuals Impacted by Fatty Acid Oxidation Disorders! [Register Now!](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) --- ### [For Medical Professionals](https://www.mitoaction.org/for-medical-professionals/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # For Medical Professionals ##### Resources for medical professionals who specialize in the diagnosis and treatment of mitochondrial diseases. ### The Mitochondrial Medicine Society The Mitochondrial Medicine Society (MMS) represents an international group of physicians, researchers and clinicians working towards advancing education, research and global collaboration in clinical mitochondrial medicine. The MMS has published the following consensus criteria to provide recommendations for optimal diagnosis and treatment. These statements are intended for physicians who are engaged in diagnosing and treating these patients. - [Diagnosis & Management of Mitochondrial Disease: A Consensus Statement from the MMS](https://www.mitoaction.org/wp-content/uploads/2019/09/Mitochondrial-Disease-Consensus-Criteria.pdf) - [Patient Care Standards for Primary Mitochondrial Disease: A Consensus Statement from the MMS](https://www.mitoaction.org/wp-content/uploads/2019/09/Patient-Care-Standards-for-Primary-Mitochondrial-Disease-GIM-2017.pdf) ![](https://www.mitoaction.org/wp-content/uploads/2019/07/MMS.png) ### The Mitochondrial Care Network The Mitochondrial Care Network (MCN) is a collaboration between mitochondrial physicians in the [Mitochondrial Medicine Society](http://www.mitosoc.org/) (MMS) and US based patient advocacy groups MitoAction and United Mitochondrial Disease Foundation. Each MCN site director leads a team of physicians with expertise in caring for patients with mitochondrial disease. [Learn more about the MCN](https://www.mitoaction.org/mitochondrial-disease/doctors/mcn/). ![](https://www.mitoaction.org/wp-content/uploads/2019/08/MCN-Logo-Blue-300-984x1024.png) ### MitoAction Educational Series for Genetic Counselors A nine part virtual webinar series designed to prepare genetic counselors and other clinicians across specialties to recognize, counsel, and support individuals and families affected by mitochondrial disease. [Learn More](https://www.mitoaction.org/for-medical-professionals/mitoaction-educational-series-for-genetic-counselors/) ![Man sits at a desk taking notes while participating in a video conference on a laptop showing multiple participants in a grid view.](https://www.mitoaction.org/wp-content/uploads/2026/06/MitoAction-Educational-Series-for-Genetic-Counselors--A-Man-Taking-Notes-While-on-a-Virtual-Webinar-1024x683.webp) --- ### [Sandra K. Russell Derby Day Benefit for Mito](https://www.mitoaction.org/events/derbyday/) **Published:** May 23, 2019 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Events](https://www.mitoaction.org/events/ "MitoAction Events") # Sandra K. Russell Derby Day Benefit for Mito **Thank you for 16 wonderful years!** The Sandra K. Russell Derby Day Benefit for Mito has helped raise over $1.8 million dollars to help improve the lives of patients and families affected by mitochondrial disease. ![Three men in suits at a party; the man in front left wears a blue blazer and red bow tie, holding a beer, as others mingle under red lighting.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-1007-1024x683.webp) ![](https://www.mitoaction.org/wp-content/uploads/2019/05/SKR_derby_logo-2-1-1024x716.png) This year, we celebrated the final Sandra K. Russell Derby Day Benefit for Mito. This annual event was held in honor of Sandra Russell, who lost her battle to mitochondrial disease in 2008. Sandra was the wife of MitoAction Board Member, Gordon Russell, and mother of Derby Day Committee Members Jonathan Russell, Buck Russell and his wife Rebecca Russell. As we look back on the last 16 years of this event, we’d like to take this opportunity to thank all of our sponsors, the Russell family, the committee, the volunteers and staff who worked tirelessly putting on the event, and everyone who attended and donated generously. The event was a huge success for MitoAction, helping to raise over $1.8 million dollars for MitoAction programs that help those with mitochondrial disease and their families, including: - 130 scholarships for students with mito through the [Matthew Harty Scholarship Fund](https://www.mitoaction.org/programs-support/mitoaction-programs/mhcf/scholarship/); - 375 kids sent to summer camp through the [Matthew Harty Camper Fund](https://www.mitoaction.org/programs-support/mitoaction-programs/mhcf/); and - 14 families sent on wish trips through [Dalia’s Wish](https://www.mitoaction.org/programs-support/mitoaction-programs/dalias-wish/); and - A wide range of programs and services offered free of charge to help patients and families navigate the daily challenges of mitochondrial disease with support, hope, and confidence. None of this would have been possible without the help and support of everyone who has generously donated their time, talent and financial support. **Thank you all for 16 wonderful years!** ## Thank You to Our 2026 Sponsors! #### Winner’s Circle Sponsor ![](https://www.mitoaction.org/wp-content/uploads/2025/08/Ucb_Logo.svg_-1024x1024.png) #### Triple Crown Sponsor ![](https://www.mitoaction.org/wp-content/uploads/2025/03/Stealth_BioTherapeutics_Logo-1024x537.jpg) #### Platinum Sponsor ![](https://www.mitoaction.org/wp-content/uploads/2026/04/Pharming-Logo-1024x241.webp) #### Blue Ribbon Sponsor ![](https://www.mitoaction.org/wp-content/uploads/2024/04/Ultragenyx-1024x423.png) #### After Party Sponsor ![](https://www.mitoaction.org/wp-content/uploads/2024/03/Dualboot-1024x284.png) #### In-Kind Sponsors ![](https://www.mitoaction.org/wp-content/uploads/2026/04/Kendra-Scott-Logo.webp) ![](https://www.mitoaction.org/wp-content/uploads/2026/04/Four-Roses-Bourbon-Logo.webp) ![](https://www.mitoaction.org/wp-content/uploads/2026/04/Stateside-Urbancraft-Vodka-Logo.webp) ![](https://www.mitoaction.org/wp-content/uploads/2026/04/Surfside-Logo.webp) ![](https://www.mitoaction.org/wp-content/uploads/2026/04/Wagner-Family-of-Wines-Logo.webp) ![](https://www.mitoaction.org/wp-content/uploads/2026/04/Deutsch-Family-Wine-Spirits-Logo.webp) ![](https://www.mitoaction.org/wp-content/uploads/2026/04/Pernod-Ricard-Logo.webp) ![](https://www.mitoaction.org/wp-content/uploads/2026/04/DDFE4A95-FF70-4260-9968-E2934DEB1EB9.jpeg) ![](https://www.mitoaction.org/wp-content/uploads/2026/04/image-9-1024x677.png) [![Group of six adults smiling for a photo at a formal event, wearing colorful dresses and hats. In the background, a sign reads 'mito9 ACTION'.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-1214-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-1214-scaled.webp)[![Woman smiling with mouth open, holding a bouquet of red roses at a lively indoor event.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-1141-683x1024.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-1141-scaled.webp)[![Colorful paper rosettes and ribbons arranged on a dark surface, like award badges for a competition or show.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-10-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-10-scaled.webp)[![Two men in suits posing for a photo at an event, smiling, with large portrait banners behind them on dark curtains.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-99-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-99-scaled.webp)[![Framed group photo resting on a stage, surrounded by large red rose arrangements and greenery.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-74-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-74-scaled.webp)[![Two women hug warmly indoors; one in a black-and-white zebra-pattern dress and a feathered black hat, smiling widely.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-111-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-111-scaled.webp)[![Two men in plaid blazers smiling at an event; the man on the left wears a white fedora and a blue rosette badge.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-155-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-155-scaled.webp)[![Two smiling adults pose for a photo at an event; man in a blue suit and straw hat with sunglasses, woman in a red dress with a black fascinator, backdrop reads 'mito ACTION'.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-175-683x1024.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-175-scaled.webp)[![A smiling couple at a party, woman in a floral dress holding a champagne flute, man in a green plaid shirt and blazer beside her.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-199-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-199-scaled.webp)[![Four adults posing at an indoor party, wearing fancy hats and bright outfits, smiling for the camera.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-276-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-276-scaled.webp)[![Registration desk at a social event; a man in a suit and a woman in a striped dress examine a program, with red roses in the foreground.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-291-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-291-scaled.webp)[![Four adults posing for a group photo at an indoor event; two men in blazers and two women in patterned dresses wearing hats, smiling at the camera with a bookstore-like backdrop.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-303-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-303-scaled.webp)[![Two adults pose for a photo at an indoor event, both wearing ribbons and smiling. The woman wears a white blouse with a feathered hat; the man wears a light suit.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-327-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-327-scaled.webp)[![Smiling couple at a formal event; man in a suit holding a cocktail, woman in a navy dress with a lime-green fascinator hat.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-346-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-346-scaled.webp)[![Man in a blue checkered suit speaks into a handheld microphone on stage, with another guest in a light suit and hat blurred in the background.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-355-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-355-scaled.webp)[![Busy fundraising gala with round tables, guests in formal wear, red roses centerpieces, and large banners reading ‘Mito Action’ in the background.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-379-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-379-scaled.webp)[![Smiling couple posing at an indoor event; man in patterned shirt, woman with purple fascinator and glasses, red curtains in background](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-408-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-408-scaled.webp)[![Four adults pose together at a social event, smiling, with drinks and ribbons on their outfits in a banquet setting](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-433-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-433-scaled.webp)[![Four adults in formal wear posing for a group photo at a event, two men in suits and two women in bright dresses with decorative hats, smiling at the camera.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-478-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-478-scaled.webp)[![Two women smile and hug at a celebration; one wears a pink feather headpiece and the other a patterned dress with a blue ribbon badge.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-505-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-505-scaled.webp)[![Three smiling women in floral and solid dresses wear decorative hats with ribbons at an indoor event, posing together.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-529-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-529-scaled.webp)[![Smiling woman wearing a bright yellow fascinator with a decorative pink-orange flower, outdoors in a garden setting, wearing a black dress.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-552-683x1024.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-552-scaled.webp)[![Smiling woman in green dress with a decorative cream hat and badge, standing beside a man in a maroon cap; they pose together on stage.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-571-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-571-scaled.webp)[![Center woman wearing a fascinator with a pink flower and birdcage veil talks to a crowd at a social event; she holds papers and wears a badge.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-620-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-620-scaled.webp)[![Four women in party outfits wearing elaborate hats smile for a group photo at a Derby Day event, indoors with a logo backdrop behind them.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-624-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-624-scaled.webp)[![Smiling couple at a formal event: man in a bright blue suit and hat beside a woman wearing a purple fascinator, with guests in the background.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-748-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-748-scaled.webp)[![Woman wearing a lace and feather headpiece smiles, resting her chin on her hand at a dim indoor event.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-755-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-755-scaled.webp)[![A smiling couple at a formal event, the woman wearing a pink dress and flower headband, holding a phone; the man in a light suit and fedora stands beside her.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-770-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-770-scaled.webp)[![Woman in a black hat with bright sunflower decorations, smiling and clapping at a lively event.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-776-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-776-scaled.webp)[![Woman in a pink dress with a flower headband lifts her phone to take a selfie at a crowded party, holding a drink in her other hand.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-806-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-806-scaled.webp)[![Two women seated at a table during a celebration; one wears a hat adorned with yellow sunflowers and looks surprised, with gift bags nearby.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-833-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-833-scaled.webp)[![Woman in a blue floral dress cheers, raising a napkin high while holding a drink at a celebration (with a man nearby).](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-835-683x1024.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-835-scaled.webp)[![Three people posing for a photo at a formal event, all wearing pink ribbons on their outfits.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-875-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-875-scaled.webp)[![Three smiling women in colorful outfits pose with oversized drink props in a photo booth backdrop filled with sponsor logos.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-899-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-899-scaled.webp)[![Five adults posing for a group photo at a Derby Day party, smiling and holding drinks, dressed in bright dresses and suits with hats/fascinators in the background.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-924-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-924-scaled.webp)[![Woman in a floral dress raises a white hat marked 34 on a stick at a party, with a man in a light suit beside her holding a drink.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-967-683x1024.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-967-scaled.webp)[![Group of friends celebrating at a party, smiling and toasting with drinks; woman in red-and-white striped dress holds a can and badge visible.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-973-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-973-scaled.webp)[![Group of four adults in formal attire posing for a photo at an event; two women wear floral/black-and-white dresses with decorative hats and ribbons, two men wear suits with ties.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-1180-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-1180-scaled.webp)[![Two women hug and smile at a lively party, wearing pastel dresses and festive headpieces.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-1163-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-1163-scaled.webp)[![Three men in suits at a party; the man in front left wears a blue blazer and red bow tie, holding a beer, as others mingle under red lighting.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-1007-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-1007-scaled.webp)[![Three adults smile for a photo at a gala: man in a Harvard cap on the left, woman in a floral dress with a white flower in her hair in the center, and man in a gray suit and hat on the right, with a busy event hall in the background.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-1044-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-1044-scaled.webp)[![Four friends at a party pose for a photo, holding drinks and smiling at the camera.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-1055-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-1055-scaled.webp)[![Three adults on a gray sofa posing for a casual photo in a living room with bookshelves behind them.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-1079-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-1079-scaled.webp)[![Four women in colorful dresses wearing large decorative hats pose and smile at an indoor event.](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-1099-1024x683.webp)](https://www.mitoaction.org/wp-content/uploads/2026/05/2026-Derby-Day-1099-scaled.webp) --- ### [Externally Led Patient-Focused Drug Development Meeting on MELAS](https://www.mitoaction.org/join-the-cause/patient-focused-drug-development-meetings/patient-focused-drug-development-meeting-on-melas/) **Published:** May 21, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to PFDD Meetings](https://www.mitoaction.org/planning-and-preparation/ "Back to Section") # Externally Led Patient-Focused Drug Development Meeting on MELAS Thank you to everyone who participated in the Patient-Focused Drug Development (PFDD) meeting focused on MELAS held by MitoAction on February 10, 2026. ![](https://www.mitoaction.org/wp-content/uploads/2025/05/Group-of-Friends-—-Make-Your-Voice-Heard-—-MitoAction-1024x585.webp) ## Stay tuned for the Voice of the Patient report, coming soon. MitoAction held our first Externally Led [Patient-Focused Drug Development (PFDD) meeting](https://www.fda.gov/industry/prescription-drug-user-fee-amendments/upcoming-el-pfdd-meetings) on February 10, 2026. This meeting focused on MELAS (Mitochondrial Encephalomyopathy, Lactic Acidosis, and Stroke-like Episodes), but it also served as a template for [future PFDD meetings](https://www.mitoaction.org/join-the-cause/patient-focused-drug-development-meetings/) we will host on other mitochondrial diseases. The meeting was an opportunity for all members of the mitochondrial disease community to come together—including patients, caregivers, clinicians, researchers and industry partners—and share their experiences through live testimony, polling and written comments. This PFDD Meeting allowed the FDA and other key stakeholders an important opportunity to hear directly from patients, their families, caregivers, and patient advocates about the symptoms that matter most to them, the impact the disease has on patients’ daily lives, and patients’ experiences with currently available treatments. This input can inform the FDA’s decisions and oversight both during drug development and during review of a marketing application. MitoAction is currently working to summarize the input shared by patients and patient representatives and compile everything into a Voice of the Patient report, which will be shared with the FDA and other key stakeholders. Clinicians, researchers, and industry partners will continue to refer to the summary report as they work on new therapies and treatments. That Report, along with other meeting materials, including transcripts, webcast recordings, and presentation slides will be published here soon. > “MELAS deeply impacts every aspect of life for patients and families. This PFDD meeting was a crucial platform for our community to educate regulators, researchers, and developers about the urgent needs and challenges of living with this devastating condition. Thank you to everyone who participated and shared your stories. > > Kira Mann, CEO of MitoAction ## Resources #### Meeting Recording https://youtu.be/OV5QHXWHqJc [MitoAction PFDD Press Release](https://www.mitoaction.org/wp-content/uploads/2025/07/MELAS-PFDD-Meeting-Press-Release—Revised-2025-07-23.pdf) [Tisento Press Release](https://www.tisentotx.com/news/tisento-highlights-two-venues-advancing-patient-focused-therapeutic-development-for-mitochondrial-diseases) [About MELAS](https://www.mitoaction.org/conditions/melas-mitochondrial-myopathy-encephalopathy-lactic-acidosis-and-stroke-like-episodes/) ### Resources - [**Video Recording of the Meeting**](#video) - **Voice of the Patient Report** (coming soon) #### Advocacy Partners ![](https://www.mitoaction.org/wp-content/uploads/2026/05/Muscular-Distrophy-Association-MDA-Logo-1024x190.webp) ![](https://www.mitoaction.org/wp-content/uploads/2026/05/United-Mitochondrial-Disease-Foundation-UMDF-Logo-1024x372.webp) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Logo-IMP-Color.png) #### Program Sponsors ![](https://www.mitoaction.org/wp-content/uploads/2024/04/Tisento-full20logo-HRZ-RGB201-1024x327.png) ![Abstract blue banner with layered geometric shapes and a large gray rectangular block in the center-right.](https://www.mitoaction.org/wp-content/uploads/2026/04/Pharming-Logo-1024x241.webp) ![](https://www.mitoaction.org/wp-content/uploads/2026/05/Amgen-Logo-1024x261.webp) ## Frequently Asked Questions What is an Externally Led Patient-Focused Drug Development (PFDD) meeting?Externally-led Patient-Focused Drug Development meetings give the FDA and other key stakeholders—including medical product developers, health care providers, and federal partners—an important opportunity to hear directly from patients, their families, caregivers, and patient advocates about the symptoms that matter most to them, the impact the disease has on patients’ daily lives, and patients’ experiences with currently available treatments. This input can inform the FDA’s decisions and oversight both during drug development and during review of a marketing application. Why should I participate in a PFDD meeting?This PFDD meeting is a critical opportunity to elevate the voice of those impacted by MELAS, helping the FDA and other key stakeholders understand the real-life burden of this complex and progressive mitochondrial disorder. Insights shared during the meeting will help guide future research, therapy development, and regulatory decisions. MitoAction will be working alongside advocacy partners including UMDF, IMP, and MDA among others to bring this meeting forward. What is the outcome from PFDD meetings? Following the PFDD meeting, MitoAction will summarize the input shared by patients and patient representatives in a Voice of the Patient report, which will be shared with the FDA and other key stakeholders. Clinicians, researchers, and industry partners will continue to refer to the summary report as they work on new therapies and treatments. Links to meeting materials, including transcripts, webcast recordings, presentation slides, and Voice of the Patient reports can be found on the Condition-Specific Meeting Reports webpage. What is Mitochondrial Encephalomyopathy, Lactic Acidosis, and Stroke-like Episodes (MELAS)?Mitochondrial Encephalomyopathy, Lactic Acidosis, and Stroke-like Episodes (MELAS) is a rare genetic mitochondrial syndrome that can present in childhood or, more commonly, in adulthood. Along with the stroke-like episodes and lactic acidosis, other symptoms of MELAS include muscle weakness, fatigue, hearing loss, and progressive neurological decline. The condition significantly affects daily functioning and quality of life, with no cure currently available. Treatment is limited to symptom management and supportive care. [Learn more about MELAS](https://www.mitoaction.org/conditions/melas-mitochondrial-myopathy-encephalopathy-lactic-acidosis-and-stroke-like-episodes/ "MELAS: Mitochondrial Myopathy Encephalopathy Lactic Acidosis and Stroke-Like Episodes"). --- ### [Agenda](https://www.mitoaction.org/events/internationalmetabolicconference/imc-agenda/) **Published:** October 23, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # Agenda Join MitoAction and the International Network for Fatty Acid Oxidation Research and Management (INFORM) for the International Metabolic Conference for Fatty Acid Oxidation Disorders on July 25-26, 2026. *This year’s conference is virtual and will also include pre-conference presentations and roundtables held the week before the conference.* [Pre-Conference](#pre-conference) [Saturday, July 25](#Saturday) [Sunday, July 26](#Sunday) Downloadable Agenda Coming Soon *The conference schedule is subject to change.* ### Schedule for Pre-Conference Roundtables & Presentations This year, we will be holding pre-conference gatherings—a combination of presentations and roundtables—on the week leading up to the conference. Although presentations will be recorded, roundtable discussions will NOT be recorded to protect patient privacy. Presentations are hosted and led by a metabolic clinician. Roundtables are led by our conference committee leaders and are a great space to meet both patients, caregivers and friends with an FAOD. These meaningful spaces will allow you time to pick the brains of others in our community, share your experiences, and build lasting friendships! ##### Sunday, July 19 2 events found. # Events for July 19, 2026 - [ ](https://www.mitoaction.org/calendar/2026-07-18/?shortcode=38b00aac "Previous day") - [ ](https://www.mitoaction.org/calendar/2026-07-20/?shortcode=38b00aac "Next day") [ Today](https://www.mitoaction.org/calendar/today/?attachment=admin-ajax.php&shortcode=38b00aac) 2026-07-19 July 19, 2026 Select date. ## 3:00 pm July 19 @ 3:00 pm - 4:00 pm ### [ Presentation: “Breaking Down” FAODs: MCADD, LCHADD, CPT2, VLCADD (and more!) ](# "Presentation: “Breaking Down” FAODs: MCADD, LCHADD, CPT2, VLCADD (and more!)") Presented by: Lauren O’Grady, MS, CGC ## Presentation: “Breaking Down” FAODs: MCADD, LCHADD, CPT2, VLCADD (and more!) July 19 @ 3:00 pm – 4:00 pm The FAOD community is comprised of numerous types of FAODs. How do they compare, what enzymes are affected, and why does this lead to different treatments? Did you ever wish someone would show you a picture and really “Break things down.” Join this discussion! [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) #### About the Speaker ![Lauren O’Grady, MS, CGC](https://www.mitoaction.org/wp-content/uploads/2026/05/Lauren-OGrady-Portrait-600x600.webp "Lauren O’Grady, MS, CGC") ##### Lauren O’Grady, MS, CGC Lauren O'Grady, MS, CGC is a senior genetic counselor in the medical genetics division at Massachusetts General Hospital (MGH) where she has practiced since 2015. She specializes in biochemical genetics and newborn screening. She works closely with patients of all ages with inborn errors of metabolism. ## 7:00 pm July 19 @ 7:00 pm - 8:00 pm ### [ You Are Not Alone: Undiagnosed Community Roundtable ](# "You Are Not Alone: Undiagnosed Community Roundtable") ## You Are Not Alone: Undiagnosed Community Roundtable July 19 @ 7:00 pm – 8:00 pm Meet up with members of the Mito/FAOD community who are genetically undiagnosed. Join in to share stories, resources, and support each other on our undiagnosed journeys. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) - [ Previous Day ](https://www.mitoaction.org/calendar/2026-07-18/?shortcode=38b00aac "Previous Day") - [ Next Day ](https://www.mitoaction.org/calendar/2026-07-20/?shortcode=38b00aac "Next Day") Subscribe to calendar - [ Google Calendar ](https://www.google.com/calendar/render?cid=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-19%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session) - [ iCalendar ](webcal://www.mitoaction.org/?post_type=tribe_events&tribe-bar-date=2026-07-19&ical=1&eventDisplay=list&tribe_events_cat=imc-pre-conference-session) - [ Outlook 365 ](https://outlook.office.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-19%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session&name=MitoAction+Events+for+July+19,+2026) - [ Outlook Live ](https://outlook.live.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-19%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session&name=MitoAction+Events+for+July+19,+2026) - [ Export .ics file ](https://www.mitoaction.org/calendar/2026-07-19/?shortcode=38b00aac&ical=1) - [ Export Outlook .ics file ](https://www.mitoaction.org/calendar/2026-07-19/?shortcode=38b00aac&outlook-ical=1#038;ical=1) ##### Monday, July 20 1 event found. # Events for July 20, 2026 - [ ](https://www.mitoaction.org/calendar/2026-07-19/?shortcode=556bd91c "Previous day") - [ ](https://www.mitoaction.org/calendar/2026-07-21/?shortcode=556bd91c "Next day") [ Today](https://www.mitoaction.org/calendar/today/?attachment=admin-ajax.php&shortcode=556bd91c) 2026-07-20 July 20, 2026 Select date. ## 7:00 pm July 20 @ 7:00 pm - 8:00 pm ### [ Roundtable Discussion: Maintaining Mental Health Through Different Waves of Your FAOD ](# "Roundtable Discussion: Maintaining Mental Health Through Different Waves of Your FAOD") ## Roundtable Discussion: Maintaining Mental Health Through Different Waves of Your FAOD July 20 @ 7:00 pm – 8:00 pm If you are an adult patient or a caregiver of an FAOD you know that there are unique challenges when managing a chronic illness. This is a safe space to discuss how to navigate these ups and downs, share meaningful resources, and connect on a deeper level while creating meaningful strategies. This unique space will be co-hosted by Sharickah Rogers an LPC with two boys w/ VLCAD, Tasia Rechisky an adult rare diseas advocate w/ VLCAD and is an advocate for rare disease and Yi Tak (Daisy) Tsang, a clinical assistant professor in Pediatric Psychology at the U of M who has presented/led roundtables at the FAOD conference the last two years!! [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) - [ Previous Day ](https://www.mitoaction.org/calendar/2026-07-19/?shortcode=556bd91c "Previous Day") - [ Next Day ](https://www.mitoaction.org/calendar/2026-07-21/?shortcode=556bd91c "Next Day") Subscribe to calendar - [ Google Calendar ](https://www.google.com/calendar/render?cid=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-20%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session) - [ iCalendar ](webcal://www.mitoaction.org/?post_type=tribe_events&tribe-bar-date=2026-07-20&ical=1&eventDisplay=list&tribe_events_cat=imc-pre-conference-session) - [ Outlook 365 ](https://outlook.office.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-20%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session&name=MitoAction+Events+for+July+20,+2026) - [ Outlook Live ](https://outlook.live.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-20%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session&name=MitoAction+Events+for+July+20,+2026) - [ Export .ics file ](https://www.mitoaction.org/calendar/2026-07-20/?shortcode=556bd91c&ical=1) - [ Export Outlook .ics file ](https://www.mitoaction.org/calendar/2026-07-20/?shortcode=556bd91c&outlook-ical=1#038;ical=1) ##### Tuesday, July 21 2 events found. # Events for July 21, 2026 - [ ](https://www.mitoaction.org/calendar/2026-07-20/?shortcode=d89f29e3 "Previous day") - [ ](https://www.mitoaction.org/calendar/2026-07-22/?shortcode=d89f29e3 "Next day") [ Today](https://www.mitoaction.org/calendar/today/?attachment=admin-ajax.php&shortcode=d89f29e3) 2026-07-21 July 21, 2026 Select date. ## 12:00 pm July 21 @ 12:00 pm - 1:00 pm ### [ Presentation: Navigating the Medical System as an FAOD Adult: Exploring the Unknown ](# "Presentation: Navigating the Medical System as an FAOD Adult: Exploring the Unknown") Presented by: Jessica Gold, MD, PhD Amanda Pritchard, MD ## Presentation: Navigating the Medical System as an FAOD Adult: Exploring the Unknown July 21 @ 12:00 pm – 1:00 pm Adulting with an FAOD presents unique challenges and questions. This presentation will discuss the multidisciplinary care team, how to improve coordination of care and how clinicians safely apply “trial and error” for situations where they have no clear data. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) #### About the Speaker ![Jessica Gold, MD, PhD](https://www.mitoaction.org/wp-content/uploads/2024/02/Photo-Jessica-Gold.webp "Jessica Gold, MD, PhD") ##### Jessica Gold, MD, PhD Dr. Jessica Gold is a medical geneticist trained in pediatrics and internal medicine with a fellowship at Children’s Hospital of Philadelphia. She currently practices at Northwell Health in NY. Both her clinical work and research is dedicated to helping adolescents and young adults with inherited metabolic disorders prepare for adulthood. For many young people, puberty and reproductive health are important milestones in emerging adulthood. Yet, clinicians lack information on these topics for people with FAODs, which impacts their ability to provide guidance. Dr. Gold is embarking on a project that is the first step in learning how people with FAODs approach puberty and reproductive health. ![Amanda Pritchard, MD](https://www.mitoaction.org/wp-content/uploads/2024/01/Photo-Amanda-Barone-Pritchard.webp "Amanda Pritchard, MD") ##### Amanda Pritchard, MD Dr. Amanda Barone Pritchard is an Associate Professor of Pediatrics at University of Michigan Health in the division of Pediatric Genetics, Metabolism, and Genomic Medicine. Dr. Pritchard attended the University of Pittsburgh School of Medicine before completing Pediatric Residency at Lurie Children’s Hospital in Chicago. She then trained in Medical Genetics and Genomics and completed a Medical Biochemical Genetics fellowship at the Children’s Hospital of Philadelphia. She has been involved in several clinical trials for inborn errors of metabolism and aids in coordination of follow-up for abnormal newborn screens. Dr. Pritchard serves as Program Director for the Medical Biochemical Genetics Fellowship at the University of Michigan. ## 7:00 pm July 21 @ 7:00 pm - 8:00 pm ### [ Roundtable Discussion: All Things MCADD ](# "Roundtable Discussion: All Things MCADD") ## Roundtable Discussion: All Things MCADD July 21 @ 7:00 pm – 8:00 pm From infancy to the teenage years, this roundtable will be a space for MCADD families to share their experiences and learn from one another. MCADD is the most common FAOD and is largely treated through avoiding fasting. Our kids tend to be outwardly healthy most of the time, but MCADD is always there and has a tendency to sneak up on us in different ways at different stages of life. Let’s connect and discuss all things MCADD! [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) - [ Previous Day ](https://www.mitoaction.org/calendar/2026-07-20/?shortcode=d89f29e3 "Previous Day") - [ Next Day ](https://www.mitoaction.org/calendar/2026-07-22/?shortcode=d89f29e3 "Next Day") Subscribe to calendar - [ Google Calendar ](https://www.google.com/calendar/render?cid=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-21%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session) - [ iCalendar ](webcal://www.mitoaction.org/?post_type=tribe_events&tribe-bar-date=2026-07-21&ical=1&eventDisplay=list&tribe_events_cat=imc-pre-conference-session) - [ Outlook 365 ](https://outlook.office.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-21%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session&name=MitoAction+Events+for+July+21,+2026) - [ Outlook Live ](https://outlook.live.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-21%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session&name=MitoAction+Events+for+July+21,+2026) - [ Export .ics file ](https://www.mitoaction.org/calendar/2026-07-21/?shortcode=d89f29e3&ical=1) - [ Export Outlook .ics file ](https://www.mitoaction.org/calendar/2026-07-21/?shortcode=d89f29e3&outlook-ical=1#038;ical=1) ##### Wednesday, July 22 1 event found. # Events for July 22, 2026 - [ ](https://www.mitoaction.org/calendar/2026-07-21/?shortcode=ca1d53a1 "Previous day") - [ ](https://www.mitoaction.org/calendar/2026-07-23/?shortcode=ca1d53a1 "Next day") [ Today](https://www.mitoaction.org/calendar/today/?attachment=admin-ajax.php&shortcode=ca1d53a1) 2026-07-22 July 22, 2026 Select date. ## 12:00 pm July 22 @ 12:00 pm - 1:00 pm ### [ Roundtable Discussion: “International Experience” ](# "Roundtable Discussion: “International Experience”") ## Roundtable Discussion: “International Experience” July 22 @ 12:00 pm – 1:00 pm Families with FAODs exist all over the world. In this fun space we will explore: How do you manage your/your child’s medical routine/diet in your own country? What are creative ways to organize traveling to other countries? How to the health care systems vary in different spaces? Where do you feel the most safe traveling? And what should you consider traveling with/what is available in different countries? [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) - [ Previous Day ](https://www.mitoaction.org/calendar/2026-07-21/?shortcode=ca1d53a1 "Previous Day") - [ Next Day ](https://www.mitoaction.org/calendar/2026-07-23/?shortcode=ca1d53a1 "Next Day") Subscribe to calendar - [ Google Calendar ](https://www.google.com/calendar/render?cid=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-22%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session) - [ iCalendar ](webcal://www.mitoaction.org/?post_type=tribe_events&tribe-bar-date=2026-07-22&ical=1&eventDisplay=list&tribe_events_cat=imc-pre-conference-session) - [ Outlook 365 ](https://outlook.office.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-22%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session&name=MitoAction+Events+for+July+22,+2026) - [ Outlook Live ](https://outlook.live.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-22%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session&name=MitoAction+Events+for+July+22,+2026) - [ Export .ics file ](https://www.mitoaction.org/calendar/2026-07-22/?shortcode=ca1d53a1&ical=1) - [ Export Outlook .ics file ](https://www.mitoaction.org/calendar/2026-07-22/?shortcode=ca1d53a1&outlook-ical=1#038;ical=1) ##### Thursday, July 23 2 events found. # Events for July 23, 2026 - [ ](https://www.mitoaction.org/calendar/2026-07-22/?shortcode=fc62cfd0 "Previous day") - [ ](https://www.mitoaction.org/calendar/2026-07-24/?shortcode=fc62cfd0 "Next day") [ Today](https://www.mitoaction.org/calendar/today/?attachment=admin-ajax.php&shortcode=fc62cfd0) 2026-07-23 July 23, 2026 Select date. ## 12:00 pm July 23 @ 12:00 pm - 1:00 pm ### [ Roundtable Discussion: Navigating School Life ](# "Roundtable Discussion: Navigating School Life") ## Roundtable Discussion: Navigating School Life July 23 @ 12:00 pm – 1:00 pm This roundtable discussion will bring together families and educators to explore how to successfully support students in the school setting. Participants will learn practical strategies for navigating school systems and educating teachers/staff about medical and academic needs to promote safety, inclusion, and student success. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) ## 7:00 pm July 23 @ 7:00 pm - 8:00 pm ### [ Roundtable Discussion: Navigating Romantic Relationships with an FAOD ](# "Roundtable Discussion: Navigating Romantic Relationships with an FAOD") ## Roundtable Discussion: Navigating Romantic Relationships with an FAOD July 23 @ 7:00 pm – 8:00 pm Navigating romantic relationships can be challenging, and having an FAOD adds additional layers to the mix. Come chat with newlyweds Alex and Tanner Hansen to discuss all the stage and components that come with partnering. Including: Important conversation to have while dating, how to plan for marriage with a disability, birth control considerations, and more! Bring your questions and topics you to sort through! [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) - [ Previous Day ](https://www.mitoaction.org/calendar/2026-07-22/?shortcode=fc62cfd0 "Previous Day") - [ Next Day ](https://www.mitoaction.org/calendar/2026-07-24/?shortcode=fc62cfd0 "Next Day") Subscribe to calendar - [ Google Calendar ](https://www.google.com/calendar/render?cid=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-23%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session) - [ iCalendar ](webcal://www.mitoaction.org/?post_type=tribe_events&tribe-bar-date=2026-07-23&ical=1&eventDisplay=list&tribe_events_cat=imc-pre-conference-session) - [ Outlook 365 ](https://outlook.office.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-23%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session&name=MitoAction+Events+for+July+23,+2026) - [ Outlook Live ](https://outlook.live.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-23%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-pre-conference-session&name=MitoAction+Events+for+July+23,+2026) - [ Export .ics file ](https://www.mitoaction.org/calendar/2026-07-23/?shortcode=fc62cfd0&ical=1) - [ Export Outlook .ics file ](https://www.mitoaction.org/calendar/2026-07-23/?shortcode=fc62cfd0&outlook-ical=1#038;ical=1) ### Schedule for Saturday, July 25, 2026 12 events found. # Events for July 25, 2026 - [ ](https://www.mitoaction.org/calendar/2026-07-24/?shortcode=5b2a59d6 "Previous day") - [ ](https://www.mitoaction.org/calendar/2026-07-26/?shortcode=5b2a59d6 "Next day") [ Today](https://www.mitoaction.org/calendar/today/?attachment=admin-ajax.php&shortcode=5b2a59d6) 2026-07-25 July 25, 2026 Select date. ## 9:30 am July 25 @ 9:30 am - 10:15 am ### [ Welcome ](# "Welcome") Presented by: Kira Mann ## Welcome July 25 @ 9:30 am – 10:15 am [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) #### About the Speaker ![Kira Mann](https://www.mitoaction.org/wp-content/uploads/2023/10/Image-6-24-26-at-1236-PM.jpeg "Kira Mann") ##### Kira Mann Kira serves as CEO of MitoAction and champions the growth of the programs and services offered by MitoAction. Her priority is to ensure that each and every person affected by mitochondrial disease knows they are not alone and that the MitoAction team will be here every step of their journey. Kira is committed to stewarding key funding opportunities, strengthening the organization’s business development and governance and working with the community to increase MitoAction’s national impact and presence in the areas of aware- ness, education and advocacy. “I am honored to lead this incredible team who works tirelessly each and every day on behalf of the amazing community we serve. I love hearing from our families, and I welcome you to reach out, share your story and help ensure that MitoAction is doing everything we can to pro- vide the support and services that are most meaningful to you.” Contact Kira at or call 248-797-2399. July 25 @ 9:45 am - 10:15 am ### [ Ultragenyx Study Updates and Initiatives ](# "Ultragenyx Study Updates and Initiatives") ## Ultragenyx Study Updates and Initiatives July 25 @ 9:45 am – 10:15 am Join the Ultragenyx team for an overview of their latest research, clinical study updates, and ongoing initiatives focused on advancing treatments for individuals living with fatty acid oxidation disorders (FAODs). Learn about current progress, future directions, and the company’s continued commitment to partnering with the FAOD community to accelerate innovation and improve patient outcomes. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) ## 10:00 am July 25 @ 10:15 am - 11:00 am ### [ Understanding LC-FAOD Guidelines ](# "Understanding LC-FAOD Guidelines") Presented by: Daniela Karall, MD, IBCLC ## Understanding LC-FAOD Guidelines July 25 @ 10:15 am – 11:00 am Guidelines for FAODs are essential as clinicians seek to collaborate and find treatment for LC-FAODs. In the last 5 years, an international group of experts in the FAOD field worked together to discuss and create guidelines for LC-FAOD treatment, which will be published in the near future. Some of these clinicians are also involved in INFORM / part of INFORM. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) #### About the Speaker ![Daniela Karall, MD, IBCLC](https://www.mitoaction.org/wp-content/uploads/2026/04/Daniela-Karall-Portrait-600x600.webp "Daniela Karall, MD, IBCLC") ##### Daniela Karall, MD, IBCLC Besides being an active member of INFORM Network, Professor Karall is responsible for inherited metabolic disorders in her current position as a Consultant to the Department for Child and Adolescent Medicine at Medical University of Innsbruck. FAOD dietary research as well as other treatment options, such as anaplerotic therapies, are her primary areas of focus. Professor Karall’s training included neuropediatrics and neonatology / pediatric intensive care, and she is an International board-certified Lactation Consultant. ## 11:00 am July 25 @ 11:00 am - 12:00 pm ### [ Pregnancies in Women With Long-Chain Fatty Acid Oxidation Disorders ](# "Pregnancies in Women With Long-Chain Fatty Acid Oxidation Disorders") Presented by: Sarah Grünert, MD ## Pregnancies in Women With Long-Chain Fatty Acid Oxidation Disorders July 25 @ 11:00 am – 12:00 pm As more women with lcFAODs are now of child-bearing age, questions of safety have arisen. Dr. Grunert will discuss an international study, in which scientists and clinicians collected data on 89 pregnancies in 39 women with lcFAODs. Their current data shows that the outcome of pregnancies in lcFAOD patients was generally favorable, despite a significant risk of metabolic decompensation during pregnancy and the postpartum period. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) #### About the Speaker ![Sarah Grünert, MD](https://www.mitoaction.org/wp-content/uploads/2026/05/Sarah-Grunert-Portrait-600x600.webp "Sarah Grünert, MD") ##### Sarah Grünert, MD Prof. Dr. Sarah Grünert is a pediatric metabolic specialist working at the University Children's Hospital Freiburg and associate professor of the Medical Faculty of the University Freiburg. After completing her medical studies in Freiburg, Innsbruck, London and Oxford, she performed her fellowship in Pediatrics at the University Medical Centre in Freiburg, Germany. In 2011, she completed a postdoctoral research fellowship at the University Children's Hospital Zürich, Switzerland. Her main clinical and research interests are fatty acid oxidation defects, hepatic glycogen storage diseases, and disorders of ketone body metabolism. She also is subnetwork coordinator for these diseases in the European Reference Network for Hereditary Metabolic Disorders (MetabERN). ## 12:00 pm July 25 @ 12:00 pm - 12:30 pm ### [ Lunch Break ](# "Lunch Break") ## Lunch Break July 25 @ 12:00 pm – 12:30 pm [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) ## 12:30 pm July 25 @ 12:30 pm - 1:15 pm ### [ FAOD Updates ](# "FAOD Updates") Presented by: Jerry Vockley, MD, PhD, FACMG ## FAOD Updates July 25 @ 12:30 pm – 1:15 pm Dr. Vockley will share current treatments and potential therapies in the FAOD community, with our yearly, “FAOD Updates!” [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) #### About the Speaker ![Jerry Vockley, MD, PhD, FACMG](https://www.mitoaction.org/wp-content/uploads/2023/10/Jerry-Vockley-Portrait-600x600.webp "Jerry Vockley, MD, PhD, FACMG") ##### Jerry Vockley, MD, PhD, FACMG Dr. Vockley received his undergraduate degree at Carnegie-Mellon University in Pittsburgh, Pennsylvania, and received his MD and PhD degrees in Medicine and Genetics from the University of Pennsylvania School of Medicine in Philadelphia, Pennsylvania. He completed his pediatric residency at the Denver Children’s Hospital, Denver, Colorado, and his postdoctoral fellowship in Human Genetic and Pediatrics at Yale University School of Medicine in New Haven, Connecticut. Before assuming his current position in Pittsburgh, Dr. Vockley was Chair of Medical Genetics in the Mayo Clinic School of Medicine. Dr. Vockley is internationally recognized as a leader in the field of inborn errors of metabolism. His current research focuses on mitochondrial energy metabolism, novel therapies for disorders of fatty acid oxidation and amino acid metabolism, and population genetics of the Plain communities in the United States. He has published over 400 peer reviewed scholarly articles and is the principal or Co-investigator on multiple NIH grants. Dr. Vockley also has an active clinical research program and participates in and consults on multiple gene therapy trials. Dr. Vockley has served on numerous national and international scientific boards including the Advisory Committee (to the Secretary of Health and Human Services) on Heritable Disorders in Newborns and Children where he was chair of the technology committee. He has been elected as a Fellow/Member of the American Association for the Advancement of Science, the Association of American Physicians, and the American Society for Clinical Investigation. Dr. Vockley is a Founding Fellow of the American College of Medical Genetics and Genomics, and currently serves on its board of directors. He is co-founder and co-chair of the International Network on Fatty Acid Oxidation Research and Therapy (INFORM). He has served as chair of the Pennsylvania State Newborn Screening Advisory Committee and is a past president of the Society for the Inherited Metabolic Disorders (SIMD). He is co-founder and editor of the SIMD North American Metabolic Academy. He provides support for numerous family advocacy groups including MitoAction, the United Mitochondrial Disease Foundation, the National PKU Association, and the Organic Acidemia Association. He has received the National Organization of Rare Diseases Scientific and Medical Trailblazer Rare Impact Award (2025) The Organic Acidemia Association Award of Excellence (2021), and the March of Dimes Champion for Babies Award (2015). July 25 @ 12:30 pm - 1:30 pm ### [ Teen Breakout Session ](# "Teen Breakout Session") ## Teen Breakout Session July 25 @ 12:30 pm – 1:30 pm Join Maddie Youtsey for a special time just for teens! If you are a teen with an FAOD or a teen sibling, come and join this special space! There will be lots of laughter, story telling, and connection! [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) ## 1:00 pm July 25 @ 1:15 pm - 1:30 pm ### [ Break ](# "Break") ## Break July 25 @ 1:15 pm – 1:30 pm [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) ## 1:30 pm July 25 @ 1:30 pm - 2:55 pm ### [ Emerging Genetic Therapies for FAODs ](# "Emerging Genetic Therapies for FAODs") Presented by: Jerry Vockley, MD, PhD, FACMG Melanie Gillingham, PhD, RD, LD Dwight Koeberl, MD, PhD ## Emerging Genetic Therapies for FAODs July 25 @ 1:30 pm – 2:55 pm New genetic therapies are under development for many rare diseases, and some have been approved by the FDA. However, none are approved for FAODs. This presentation will share ongoing research in three different laboratories aimed at developing mRNA and gene therapies for these disorders. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) #### About the Speaker ![Jerry Vockley, MD, PhD, FACMG](https://www.mitoaction.org/wp-content/uploads/2023/10/Jerry-Vockley-Portrait-600x600.webp "Jerry Vockley, MD, PhD, FACMG") ##### Jerry Vockley, MD, PhD, FACMG Dr. Vockley received his undergraduate degree at Carnegie-Mellon University in Pittsburgh, Pennsylvania, and received his MD and PhD degrees in Medicine and Genetics from the University of Pennsylvania School of Medicine in Philadelphia, Pennsylvania. He completed his pediatric residency at the Denver Children’s Hospital, Denver, Colorado, and his postdoctoral fellowship in Human Genetic and Pediatrics at Yale University School of Medicine in New Haven, Connecticut. Before assuming his current position in Pittsburgh, Dr. Vockley was Chair of Medical Genetics in the Mayo Clinic School of Medicine. Dr. Vockley is internationally recognized as a leader in the field of inborn errors of metabolism. His current research focuses on mitochondrial energy metabolism, novel therapies for disorders of fatty acid oxidation and amino acid metabolism, and population genetics of the Plain communities in the United States. He has published over 400 peer reviewed scholarly articles and is the principal or Co-investigator on multiple NIH grants. Dr. Vockley also has an active clinical research program and participates in and consults on multiple gene therapy trials. Dr. Vockley has served on numerous national and international scientific boards including the Advisory Committee (to the Secretary of Health and Human Services) on Heritable Disorders in Newborns and Children where he was chair of the technology committee. He has been elected as a Fellow/Member of the American Association for the Advancement of Science, the Association of American Physicians, and the American Society for Clinical Investigation. Dr. Vockley is a Founding Fellow of the American College of Medical Genetics and Genomics, and currently serves on its board of directors. He is co-founder and co-chair of the International Network on Fatty Acid Oxidation Research and Therapy (INFORM). He has served as chair of the Pennsylvania State Newborn Screening Advisory Committee and is a past president of the Society for the Inherited Metabolic Disorders (SIMD). He is co-founder and editor of the SIMD North American Metabolic Academy. He provides support for numerous family advocacy groups including MitoAction, the United Mitochondrial Disease Foundation, the National PKU Association, and the Organic Acidemia Association. He has received the National Organization of Rare Diseases Scientific and Medical Trailblazer Rare Impact Award (2025) The Organic Acidemia Association Award of Excellence (2021), and the March of Dimes Champion for Babies Award (2015). ![Melanie Gillingham, PhD, RD, LD](https://www.mitoaction.org/wp-content/uploads/2023/10/Photo-Melanie-Gillingham.webp "Melanie Gillingham, PhD, RD, LD") ##### Melanie Gillingham, PhD, RD, LD Dr. Melanie Gillingham’s research in the Department of Molecular and Medical Genetics has focused on various novel therapies for fatty acid oxidation disorders. For 20 years, Dr. Gillingham and her colleagues have conducted clinical trials in subjects with disorders in the fatty acid oxidation pathway. She has examined the effects of medium chain triglycerides (MCT) supplements prior to exercise on exercise performance among subjects with long-chain 3-hydroxyacyl-CoA dehydrogenase (LCHAD) deficiency receiving the Emmanuel Shapira Award for best paper in Molecular Genetics and Metabolism. The Gillingham lab has evaluated the effects of increased dietary protein on metabolic control and energy balance in subjects with LCHAD, carnitine palmitoyltransferase 2 (CPT-2) and very long-chain acylCoA dehydrogenase (VLCAD) deficiencies. In a separate study, Dr. Gillingham conducted supervised metabolic fasting studies in young children with a polymorphism of the CPT1A gene to determine if they have an altered fasting response similar to other fatty acid oxidation disorders. In 2014, a group of FAO researchers, under the leadership of Dr. Jerry Vockley, founded the International Network for Fatty Acid Oxidation Research and Management (INFORM), an international group working for the advancement of medical and nutrition therapies for fatty acid oxidation disorders ([www.informnetwork.org](http://www.informnetwork.org/)). Dr. Gillingham participates on the organizing committee of INFORM. Dr. Vockley and Dr. Gillingham completed a randomized trial to examine the effects of an odd-chain fatty acid supplement, triheptanion, on myopathy and cardiac function of patients with long-chain fatty acid oxidation disorders. This is the largest randomized controlled trial conducted in these disorders to date and was recently selected for the Garrod award by the Society for the Study of Inborn Errors of Metabolism (SSIEM). Dr. Gillingham has also conducted a series of studies examining the etiology of retinopathy in LCHAD and the role of diet in the progression of vision loss. Dr. Gillingham is currently conducting a larger natural history study of LCHAD retinopathy. ![Dwight Koeberl, MD, PhD](https://www.mitoaction.org/wp-content/uploads/2026/04/Dwight-Koeberl-Portrait-600x600.webp "Dwight Koeberl, MD, PhD") ##### Dwight Koeberl, MD, PhD Dr. Koeberl attended Carleton College, and then Mayo Medical School and Graduate School, before moving to UCSF for his pediatrics residency. He then completed fellowship training in Clinical and Biochemical Genetics at the University of Washington, before joining the Division of Medical Genetics in the Department of Pediatrics at Duke University in 1999. He serves as Medical Director for the Pediatrics Biochemical Genetics Laboratory and sees patients in the Metabolic Clinic. His research has focused on the development of new therapy for inherited metabolic disorders, including glycogen storage disease type Ia and Pompe disease. He initiated a clinical trial of AAV8 gene therapy for Pompe disease that is ongoing. His laboratory is currently developing genetic therapies for trifunctional protein deficiency and LCHAD deficiency. ## 2:30 pm July 25 @ 2:55 pm - 3:00 pm ### [ Break ](# "Break") ## Break July 25 @ 2:55 pm – 3:00 pm [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) ## 3:00 pm July 25 @ 3:00 pm - 4:00 pm ### [ Patient/Family Panel ](# "Patient/Family Panel") ## Patient/Family Panel July 25 @ 3:00 pm – 4:00 pm Patients and Caregivers from the FAOD community will have time to share their wisdom and lessons learned during their journey. They will tackle pre-prepared questions, and field questions during the panel discussion. If you would like to submit a question ahead of time please contact Stephanie Harry at sharry@mitoaction.org. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) ## 4:00 pm July 25 @ 4:00 pm - 4:30 pm ### [ Closing ](# "Closing") ## Closing July 25 @ 4:00 pm – 4:30 pm [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) - [ Previous Day ](https://www.mitoaction.org/calendar/2026-07-24/?shortcode=5b2a59d6 "Previous Day") - [ Next Day ](https://www.mitoaction.org/calendar/2026-07-26/?shortcode=5b2a59d6 "Next Day") Subscribe to calendar - [ Google Calendar ](https://www.google.com/calendar/render?cid=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-25%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-conference-session) - [ iCalendar ](webcal://www.mitoaction.org/?post_type=tribe_events&tribe-bar-date=2026-07-25&ical=1&eventDisplay=list&tribe_events_cat=imc-conference-session) - [ Outlook 365 ](https://outlook.office.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-25%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-conference-session&name=MitoAction+Events+for+July+25,+2026) - [ Outlook Live ](https://outlook.live.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-25%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-conference-session&name=MitoAction+Events+for+July+25,+2026) - [ Export .ics file ](https://www.mitoaction.org/calendar/2026-07-25/?shortcode=5b2a59d6&ical=1) - [ Export Outlook .ics file ](https://www.mitoaction.org/calendar/2026-07-25/?shortcode=5b2a59d6&outlook-ical=1#038;ical=1) ### Schedule for Sunday, July 26, 2026 8 events found. # Events for July 26, 2026 - [ ](https://www.mitoaction.org/calendar/2026-07-25/?shortcode=360c1549 "Previous day") - [ ](https://www.mitoaction.org/calendar/2026-07-27/?shortcode=360c1549 "Next day") [ Today](https://www.mitoaction.org/calendar/today/?attachment=admin-ajax.php&shortcode=360c1549) 2026-07-26 July 26, 2026 Select date. ## 1:00 pm July 26 @ 1:00 pm - 1:15 pm ### [ Welcome ](# "Welcome") Presented by: Kira Mann Stephanie Harry ## Welcome July 26 @ 1:00 pm – 1:15 pm [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) #### About the Speaker ![Kira Mann](https://www.mitoaction.org/wp-content/uploads/2023/10/Image-6-24-26-at-1236-PM.jpeg "Kira Mann") ##### Kira Mann Kira serves as CEO of MitoAction and champions the growth of the programs and services offered by MitoAction. Her priority is to ensure that each and every person affected by mitochondrial disease knows they are not alone and that the MitoAction team will be here every step of their journey. Kira is committed to stewarding key funding opportunities, strengthening the organization’s business development and governance and working with the community to increase MitoAction’s national impact and presence in the areas of aware- ness, education and advocacy. “I am honored to lead this incredible team who works tirelessly each and every day on behalf of the amazing community we serve. I love hearing from our families, and I welcome you to reach out, share your story and help ensure that MitoAction is doing everything we can to pro- vide the support and services that are most meaningful to you.” Contact Kira at or call 248-797-2399. ![Stephanie Harry](https://www.mitoaction.org/wp-content/uploads/2022/09/Stephanie-Harry-e1674068973953-600x600.jpg "Stephanie Harry") ##### Stephanie Harry Stephanie’s son was diagnosed in 2008 with LCHAD deficiency. She spent her son’s early years educating herself through research, journal articles, work groups, and clinicians. She worked alongside her son’s dietitian to publish a children’s book called “My Special Body” geared toward educating young children with LC-FAODs. She is passionate about education, mentorship, and advocacy. In 2022 Stephanie joined the MitoAction team to support the greater mitochondrial community. “I am so excited to be a part of the MitoAction team! My goal is to always create a safe inquisitive space where people feel loved, listened to and have continued access to meaningful resources. I look forward to connecting with each family and patient, and feel honored to walk this journey with you!” Contact Stephanie at . July 26 @ 1:15 pm - 2:00 pm ### [ Cultivating a New Normal: A Guide for New Families with FAODs ](# "Cultivating a New Normal: A Guide for New Families with FAODs") Presented by: Georgianne Arnold, MD, Phd Stephanie Harry ## Cultivating a New Normal: A Guide for New Families with FAODs July 26 @ 1:15 pm – 2:00 pm When a child is diagnosed with an FAOD the world of a caregiver drastically changes. This presentation will draw on the insight of both a long-standing geneticist in the FAOD community and parent who is 17 years into the journey. Together they will explore topics that families face who are new to the journey. If you have a newborn through high schooler, this session is for you! [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) #### About the Speaker ![Georgianne Arnold, MD, Phd](https://www.mitoaction.org/wp-content/uploads/2023/10/Dr.-Georgianne-Arnold-Portrait-–-2025-06-18-600x600.webp "Georgianne Arnold, MD, Phd") ##### Georgianne Arnold, MD, Phd Dr. Arnold graduated from Indiana University with degrees in biology and chemistry, and has a Masters degree in Medical Genetics from Indiana University-Purdue University at Indianapolis. She graduated from medical school from Upstate Medical University, and completed a residency in Pediatrics at Northwestern University. Her genetics training was at the University of Colorado and she is boarded in Clinical Biochemical Genetics and Clinical Genetics. Dr. Arnold was Clinical Director and most recently Clinical Research Director at the University of Pittsburgh. She is an Emeritus Professor, and a consultant with VMP Genetics. Dr. Arnold is the past president of the Society for Inherited Metabolic Disorders, and recipient of the Shapira award for the best member’s paper in Molecular Genetics and Metabolism. She has a long-standing interest in fatty acid oxidation disorders, working with Dr. Vockley for 13 years. ![Stephanie Harry](https://www.mitoaction.org/wp-content/uploads/2022/09/Stephanie-Harry-e1674068973953-600x600.jpg "Stephanie Harry") ##### Stephanie Harry Stephanie’s son was diagnosed in 2008 with LCHAD deficiency. She spent her son’s early years educating herself through research, journal articles, work groups, and clinicians. She worked alongside her son’s dietitian to publish a children’s book called “My Special Body” geared toward educating young children with LC-FAODs. She is passionate about education, mentorship, and advocacy. In 2022 Stephanie joined the MitoAction team to support the greater mitochondrial community. “I am so excited to be a part of the MitoAction team! My goal is to always create a safe inquisitive space where people feel loved, listened to and have continued access to meaningful resources. I look forward to connecting with each family and patient, and feel honored to walk this journey with you!” Contact Stephanie at . ## 2:00 pm July 26 @ 2:00 pm - 3:00 pm ### [ From Supplements to Weight Loss – Maximizing Your Nutrition Health ](# "From Supplements to Weight Loss –  Maximizing Your Nutrition Health") Presented by: Melanie Gillingham, PhD, RD, LD ## From Supplements to Weight Loss – Maximizing Your Nutrition Health July 26 @ 2:00 pm – 3:00 pm This presentation will review the diet records and current supplements from participants in the Natural History of LCHADD Retinopathy study. Then Dr. Gillingham will discuss how to maximize micronutrient intake, what is the right amount of protein, and how to think about body weight and weight loss while also managing an FAOD. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) #### About the Speaker ![Melanie Gillingham, PhD, RD, LD](https://www.mitoaction.org/wp-content/uploads/2023/10/Photo-Melanie-Gillingham.webp "Melanie Gillingham, PhD, RD, LD") ##### Melanie Gillingham, PhD, RD, LD Dr. Melanie Gillingham’s research in the Department of Molecular and Medical Genetics has focused on various novel therapies for fatty acid oxidation disorders. For 20 years, Dr. Gillingham and her colleagues have conducted clinical trials in subjects with disorders in the fatty acid oxidation pathway. She has examined the effects of medium chain triglycerides (MCT) supplements prior to exercise on exercise performance among subjects with long-chain 3-hydroxyacyl-CoA dehydrogenase (LCHAD) deficiency receiving the Emmanuel Shapira Award for best paper in Molecular Genetics and Metabolism. The Gillingham lab has evaluated the effects of increased dietary protein on metabolic control and energy balance in subjects with LCHAD, carnitine palmitoyltransferase 2 (CPT-2) and very long-chain acylCoA dehydrogenase (VLCAD) deficiencies. In a separate study, Dr. Gillingham conducted supervised metabolic fasting studies in young children with a polymorphism of the CPT1A gene to determine if they have an altered fasting response similar to other fatty acid oxidation disorders. In 2014, a group of FAO researchers, under the leadership of Dr. Jerry Vockley, founded the International Network for Fatty Acid Oxidation Research and Management (INFORM), an international group working for the advancement of medical and nutrition therapies for fatty acid oxidation disorders ([www.informnetwork.org](http://www.informnetwork.org/)). Dr. Gillingham participates on the organizing committee of INFORM. Dr. Vockley and Dr. Gillingham completed a randomized trial to examine the effects of an odd-chain fatty acid supplement, triheptanion, on myopathy and cardiac function of patients with long-chain fatty acid oxidation disorders. This is the largest randomized controlled trial conducted in these disorders to date and was recently selected for the Garrod award by the Society for the Study of Inborn Errors of Metabolism (SSIEM). Dr. Gillingham has also conducted a series of studies examining the etiology of retinopathy in LCHAD and the role of diet in the progression of vision loss. Dr. Gillingham is currently conducting a larger natural history study of LCHAD retinopathy. ## 3:00 pm July 26 @ 3:00 pm - 4:00 pm ### [ Beyond Traditional Physical Therapy: Exploring New Paths in Metabolic Care ](# "Beyond Traditional Physical Therapy: Exploring New Paths in Metabolic Care") Presented by: Pamela Tucker, DPT, PT Brian Weber, DPT, CFMT, FFMT, FAFS, FAAOMPT ## Beyond Traditional Physical Therapy: Exploring New Paths in Metabolic Care July 26 @ 3:00 pm – 4:00 pm This session introduces caregivers and patients to alternative therapy options—including aquatic therapy, hippotherapy, and emerging modalities like red light therapy and compression recovery systems. Presenters will explain how these approaches may support strength, endurance, and overall function, while offering practical guidance on safety, access, and real-world use. Attendees will leave with a clearer understanding of how to thoughtfully incorporate these therapies into everyday care. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) #### About the Speaker ![Pamela Tucker, DPT, PT](https://www.mitoaction.org/wp-content/uploads/2023/10/Pamela-Tuicker-Portrait-–-2025-06-18-600x600.webp "Pamela Tucker, DPT, PT") ##### Pamela Tucker, DPT, PT Dr. Pamela Tucker, PT, DPT, is a physical therapist at Bethany Children's Health Center, where she practices on the medical rehabilitation unit, specializing in the care of medically complex pediatric patients. She earned her undergraduate degree from Duke University and her doctorate in Physical Therapy from Franklin Pierce University. Dr. Tucker brings a diverse clinical background spanning acute care, inpatient rehabilitation, and outpatient physical therapy, with experience treating infant, pediatric, and adult populations. Her clinical expertise focuses on neurorehabilitation, functional mobility, and optimizing participation and independence across the continuum of care. A recognized national and international speaker, Dr. Tucker has contributed to the advancement of rehabilitation practice through multiple peer-reviewed publications and professional presentations. She is committed to translating evidence into practice and advancing interdisciplinary care for individuals with complex medical and neurological conditions. Her research interests include physical therapy interventions for children with inherited metabolic disorders, aquatic physical therapy, concussion management, and robotic-assisted mobility training. Dr. Tucker is currently working on a physical therapy protocol to recover from rhabdomyolysis. ![Brian Weber, DPT, CFMT, FFMT, FAFS, FAAOMPT](https://www.mitoaction.org/wp-content/uploads/2026/05/Brian-Weber-Portrait-600x600.webp "Brian Weber, DPT, CFMT, FFMT, FAFS, FAAOMPT") ##### Brian Weber, DPT, CFMT, FFMT, FAFS, FAAOMPT Brian Weber, DPT, CFMT, FFMT, FAFS, FAAOMPT is the founder of KINECIO Physical Therapy in Woodbury, Minnesota, where he specializes in second opinions and complex case management. Dr. Weber received his Doctorate in Physical Therapy from the University of Iowa and completed fellowships in Functional Manual Therapy through the Institute of Physical Art and Applied Functional Science through the Gray Institute. His work focuses on integrating advanced manual therapy, movement science, and whole-body clinical reasoning to improve movement, performance, and quality of life. ## 4:00 pm July 26 @ 4:00 pm - 4:45 pm ### [ Development of a Cell-in-a-Dish Model to Study Peripheral Neuropathy in LCHADD ](# "Development of a Cell-in-a-Dish Model to Study Peripheral Neuropathy in LCHADD") Presented by: Chen Zhang ## Development of a Cell-in-a-Dish Model to Study Peripheral Neuropathy in LCHADD July 26 @ 4:00 pm – 4:45 pm Scientists are aiming to better understand the mechanisms underlying peripheral nervous system dysfunction in LCHADD/MTPD. The limited accessibility of human neural tissues and the lack of disease-specific experimental models, mechanistic studies of peripheral neuropathy (PN) in LCHADD/MTPD remain challenging. In this presentation, Chen Zhang will introduce and explain a cell-in-a-dish platform, combining human stem cell-derived neural cells and primary rat cells to investigate the interactions/effects of circulating metabolites on neural cells and sensory neuron–Schwann cell itnteractions. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) #### About the Speaker ![Chen Zhang](https://www.mitoaction.org/wp-content/uploads/2026/05/Chen-Zhang-Portrait-600x600.webp "Chen Zhang") ##### Chen Zhang Chen Zhang received her Master’s degree in Biochemistry and Molecular Biology from the University of Chinese Academy of Sciences. Prior to joining Aarhus University, she worked as a research assistant at Qilu Hospital, China, where her research focused on mitochondrial diseases. Chen Zhang is currently a PhD student in the Department of Clinical Medicine at Aarhus University, Denmark. Her research centers on developing and applying the “LCHADD PN-in-a-dish” model in combination with biochemical analyses and multi-omics approaches to investigate fatty acid oxidation-related neuropathy. Through this work, she aims to advance the understanding of peripheral neuropathy in LCHADD and related metabolic disorders, including diabetes, and to support the development of future therapeutic strategies. ## 4:30 pm July 26 @ 4:45 pm - 5:00 pm ### [ Break ](# "Break") ## Break July 26 @ 4:45 pm – 5:00 pm [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) ## 5:00 pm July 26 @ 5:00 pm - 6:00 pm ### [ Clinician Panel ](# "Clinician Panel") Presented by: Jerry Vockley, MD, PhD, FACMG Melanie Gillingham, PhD, RD, LD Georgianne Arnold, MD, Phd Pamela Tucker, DPT, PT ## Clinician Panel July 26 @ 5:00 pm – 6:00 pm Bring your questions to ask during the Q&A session, or feel free to submit them ahead of time to Stephanie Harry at . [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) #### About the Speaker ![Jerry Vockley, MD, PhD, FACMG](https://www.mitoaction.org/wp-content/uploads/2023/10/Jerry-Vockley-Portrait-600x600.webp "Jerry Vockley, MD, PhD, FACMG") ##### Jerry Vockley, MD, PhD, FACMG Dr. Vockley received his undergraduate degree at Carnegie-Mellon University in Pittsburgh, Pennsylvania, and received his MD and PhD degrees in Medicine and Genetics from the University of Pennsylvania School of Medicine in Philadelphia, Pennsylvania. He completed his pediatric residency at the Denver Children’s Hospital, Denver, Colorado, and his postdoctoral fellowship in Human Genetic and Pediatrics at Yale University School of Medicine in New Haven, Connecticut. Before assuming his current position in Pittsburgh, Dr. Vockley was Chair of Medical Genetics in the Mayo Clinic School of Medicine. Dr. Vockley is internationally recognized as a leader in the field of inborn errors of metabolism. His current research focuses on mitochondrial energy metabolism, novel therapies for disorders of fatty acid oxidation and amino acid metabolism, and population genetics of the Plain communities in the United States. He has published over 400 peer reviewed scholarly articles and is the principal or Co-investigator on multiple NIH grants. Dr. Vockley also has an active clinical research program and participates in and consults on multiple gene therapy trials. Dr. Vockley has served on numerous national and international scientific boards including the Advisory Committee (to the Secretary of Health and Human Services) on Heritable Disorders in Newborns and Children where he was chair of the technology committee. He has been elected as a Fellow/Member of the American Association for the Advancement of Science, the Association of American Physicians, and the American Society for Clinical Investigation. Dr. Vockley is a Founding Fellow of the American College of Medical Genetics and Genomics, and currently serves on its board of directors. He is co-founder and co-chair of the International Network on Fatty Acid Oxidation Research and Therapy (INFORM). He has served as chair of the Pennsylvania State Newborn Screening Advisory Committee and is a past president of the Society for the Inherited Metabolic Disorders (SIMD). He is co-founder and editor of the SIMD North American Metabolic Academy. He provides support for numerous family advocacy groups including MitoAction, the United Mitochondrial Disease Foundation, the National PKU Association, and the Organic Acidemia Association. He has received the National Organization of Rare Diseases Scientific and Medical Trailblazer Rare Impact Award (2025) The Organic Acidemia Association Award of Excellence (2021), and the March of Dimes Champion for Babies Award (2015). ![Melanie Gillingham, PhD, RD, LD](https://www.mitoaction.org/wp-content/uploads/2023/10/Photo-Melanie-Gillingham.webp "Melanie Gillingham, PhD, RD, LD") ##### Melanie Gillingham, PhD, RD, LD Dr. Melanie Gillingham’s research in the Department of Molecular and Medical Genetics has focused on various novel therapies for fatty acid oxidation disorders. For 20 years, Dr. Gillingham and her colleagues have conducted clinical trials in subjects with disorders in the fatty acid oxidation pathway. She has examined the effects of medium chain triglycerides (MCT) supplements prior to exercise on exercise performance among subjects with long-chain 3-hydroxyacyl-CoA dehydrogenase (LCHAD) deficiency receiving the Emmanuel Shapira Award for best paper in Molecular Genetics and Metabolism. The Gillingham lab has evaluated the effects of increased dietary protein on metabolic control and energy balance in subjects with LCHAD, carnitine palmitoyltransferase 2 (CPT-2) and very long-chain acylCoA dehydrogenase (VLCAD) deficiencies. In a separate study, Dr. Gillingham conducted supervised metabolic fasting studies in young children with a polymorphism of the CPT1A gene to determine if they have an altered fasting response similar to other fatty acid oxidation disorders. In 2014, a group of FAO researchers, under the leadership of Dr. Jerry Vockley, founded the International Network for Fatty Acid Oxidation Research and Management (INFORM), an international group working for the advancement of medical and nutrition therapies for fatty acid oxidation disorders ([www.informnetwork.org](http://www.informnetwork.org/)). Dr. Gillingham participates on the organizing committee of INFORM. Dr. Vockley and Dr. Gillingham completed a randomized trial to examine the effects of an odd-chain fatty acid supplement, triheptanion, on myopathy and cardiac function of patients with long-chain fatty acid oxidation disorders. This is the largest randomized controlled trial conducted in these disorders to date and was recently selected for the Garrod award by the Society for the Study of Inborn Errors of Metabolism (SSIEM). Dr. Gillingham has also conducted a series of studies examining the etiology of retinopathy in LCHAD and the role of diet in the progression of vision loss. Dr. Gillingham is currently conducting a larger natural history study of LCHAD retinopathy. ![Georgianne Arnold, MD, Phd](https://www.mitoaction.org/wp-content/uploads/2023/10/Dr.-Georgianne-Arnold-Portrait-–-2025-06-18-600x600.webp "Georgianne Arnold, MD, Phd") ##### Georgianne Arnold, MD, Phd Dr. Arnold graduated from Indiana University with degrees in biology and chemistry, and has a Masters degree in Medical Genetics from Indiana University-Purdue University at Indianapolis. She graduated from medical school from Upstate Medical University, and completed a residency in Pediatrics at Northwestern University. Her genetics training was at the University of Colorado and she is boarded in Clinical Biochemical Genetics and Clinical Genetics. Dr. Arnold was Clinical Director and most recently Clinical Research Director at the University of Pittsburgh. She is an Emeritus Professor, and a consultant with VMP Genetics. Dr. Arnold is the past president of the Society for Inherited Metabolic Disorders, and recipient of the Shapira award for the best member’s paper in Molecular Genetics and Metabolism. She has a long-standing interest in fatty acid oxidation disorders, working with Dr. Vockley for 13 years. ![Pamela Tucker, DPT, PT](https://www.mitoaction.org/wp-content/uploads/2023/10/Pamela-Tuicker-Portrait-–-2025-06-18-600x600.webp "Pamela Tucker, DPT, PT") ##### Pamela Tucker, DPT, PT Dr. Pamela Tucker, PT, DPT, is a physical therapist at Bethany Children's Health Center, where she practices on the medical rehabilitation unit, specializing in the care of medically complex pediatric patients. She earned her undergraduate degree from Duke University and her doctorate in Physical Therapy from Franklin Pierce University. Dr. Tucker brings a diverse clinical background spanning acute care, inpatient rehabilitation, and outpatient physical therapy, with experience treating infant, pediatric, and adult populations. Her clinical expertise focuses on neurorehabilitation, functional mobility, and optimizing participation and independence across the continuum of care. A recognized national and international speaker, Dr. Tucker has contributed to the advancement of rehabilitation practice through multiple peer-reviewed publications and professional presentations. She is committed to translating evidence into practice and advancing interdisciplinary care for individuals with complex medical and neurological conditions. Her research interests include physical therapy interventions for children with inherited metabolic disorders, aquatic physical therapy, concussion management, and robotic-assisted mobility training. Dr. Tucker is currently working on a physical therapy protocol to recover from rhabdomyolysis. ## 6:00 pm July 26 @ 6:00 pm - 6:30 pm ### [ Closing ](# "Closing") ## Closing July 26 @ 6:00 pm – 6:30 pm [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) - [ Previous Day ](https://www.mitoaction.org/calendar/2026-07-25/?shortcode=360c1549 "Previous Day") - [ Next Day ](https://www.mitoaction.org/calendar/2026-07-27/?shortcode=360c1549 "Next Day") Subscribe to calendar - [ Google Calendar ](https://www.google.com/calendar/render?cid=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-26%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-conference-session) - [ iCalendar ](webcal://www.mitoaction.org/?post_type=tribe_events&tribe-bar-date=2026-07-26&ical=1&eventDisplay=list&tribe_events_cat=imc-conference-session) - [ Outlook 365 ](https://outlook.office.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-26%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-conference-session&name=MitoAction+Events+for+July+26,+2026) - [ Outlook Live ](https://outlook.live.com/owa?path=/calendar/action/compose&rru=addsubscription&url=webcal%3A%2F%2Fwww.mitoaction.org%2F%3Fpost_type%3Dtribe_events%26tribe-bar-date%3D2026-07-26%26ical%3D1%26eventDisplay%3Dlist%26tribe_events_cat%3Dimc-conference-session&name=MitoAction+Events+for+July+26,+2026) - [ Export .ics file ](https://www.mitoaction.org/calendar/2026-07-26/?shortcode=360c1549&ical=1) - [ Export Outlook .ics file ](https://www.mitoaction.org/calendar/2026-07-26/?shortcode=360c1549&outlook-ical=1#038;ical=1) --- ### [Support Team MitoAction!](https://www.mitoaction.org/join-the-cause/giving/support-team-mitoaction/) **Published:** May 21, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Giving](https://www.mitoaction.org/planning-and-preparation/ "Back to Section") # Support Team MitoAction! Team MitoAction competes in races around the country to raise awareness of Mitochondrial Disease and raise funds to support MitoAction’s patient support programs. ![](https://www.mitoaction.org/wp-content/uploads/2025/05/Team-MitoAction-at-2024-Falmouth-Road-Race-—-MitoAction-1024x683.webp) MitoAction is dedicated to improving the lives of individuals and families affected by mitochondrial disease. Through support, education, advocacy, and awareness, we strive to empower our community and provide critical resources. Funds raised help support programs like the Matthew Harty Camper Fund, which gives children with mito the opportunity to attend a week at summer camp, and Dalia’s Wish, which grants meaningful Disney wish trip experiences to children and families battling this disease. ### Support Our Mission by Supporting Team MitoAction! Team MitoAction competes in races around the country to raise awareness of Mitochondrial Disease and raise funds to support MitoAction’s patient support programs. **Last year, our amazing team raised over $19,000, and this year, we’re hoping to surpass our $20,000 goal!** Every dollar you donate brings hope, assistance, and life-changing opportunities to those who need it most. Join us in making a difference—whether you are running, donating, or cheering us on, your support fuels our mission and the mito community! ## Upcoming Races ### **2026 ASICS Falmouth Road Race** **Sunday, August 16, 2026** **Falmouth, Massachusetts** Donate today to support our Team MitoAction runners at the 2025 ASICS Falmouth Road Race. Your generosity allows us to provide resources and support for as many mito patients and families around the world as possible! This year our goal is to raise $20,000! [Support Team MitoAction or a Specific Runner](https://raceroster.com/events/2026/112177/the-2026-asics-falmouth-road-race/pledge/team/926911) --- ### [Mitochondrial Disease Treatment](https://www.mitoaction.org/mitochondrial-disease/treatment/) **Published:** September 25, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Mitochondrial Disease](https://www.mitoaction.org/mitochondrial-disease/ "Back to Mitochondrial disease") # Mitochondrial Disease Treatment The treatment options available for treating mito are changing. Here you’ll find the latest info regarding current and future mitochondrial disease treatments and therapies. ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Doctor-meeting-with-young-girl-and-mother-1024x682.jpg) Mitochondrial disease is a group of genetic disorders caused by dysfunctional mitochondria, so treatment options vary depending on the [type mitochondrial disease](https://www.mitoaction.org/mitochondrial-disease/types-of-mitochondrial-diseases/) and the symptoms. In the past, treatment options were purely palliative to relieve or minimize symptoms, but that is changing. Exciting new [FDA-approved drugs and therapies](https://www.mitoaction.org/mitochondrial-disease/treatment/current-fda-approved-treatments-for-mitochondrial-disease/ "Current FDA-Approved Treatments for Mitochondrial Disease") are now available for some mitochondrial diseases and more are currently in [clinical trials](https://www.mitoaction.org/clinicaltrials/). ### Find a Doctor Who Specializes in Mito Mitochondrial diseases are considered rare, so most physicians have no experience treating them. Our directory makes it easy to find a doctor who specializes in Mito. [Find a Doctor](https://www.mitoaction.org/mitochondrial-disease/doctors/) ### FDA-Approved Treatments for Mito There are now FDA-approved treatments for some mitochondrial diseases, and clinical trials are currently underway for others. [FDA-Approved Treatments](https://www.mitoaction.org/mitochondrial-disease/treatment/current-fda-approved-treatments-for-mitochondrial-disease/) [Current Clinic Trials](https://www.mitoaction.org/clinicaltrials/) ### Mitochondrial Transplantation Pioneering new research and clinical trials are currently underway to assess the safety and effectiveness of mitochondrial transplantation as a treatment for mito. [About Mito Transplantation](https://www.mitoaction.org/mitochondrial-disease/treatment/mitochondrial-transplantation/) ### General Supportive Treatments Exercise, Nutrition and the Mito Cocktail (an assortment of vitamins and other supplements) all play an important role in treating and managing mito disease symptoms. [Mito Cocktail ](https://www.mitoaction.org/mitochondrial-disease/treatment/mito-cocktail/) [Exercise & Nutrition for Mito](https://www.mitoaction.org/day-to-day-with-mito/exercise-with-mito/) You can also find disease-specific treatment options and more on our [Types of Mitochondrial Diseases](https://www.mitoaction.org/mitochondrial-disease/types-of-mitochondrial-diseases/) page. --- ### [Mitochondrial Transplantation](https://www.mitoaction.org/mitochondrial-disease/treatment/mitochondrial-transplantation/) **Published:** April 9, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Treatment](https://www.mitoaction.org/mitochondrial-disease/treatment/ "Back to Treatment") # Mitochondrial Transplantation Learn more about the emerging research in mitochondrial transplantation and its potential as a viable therapy for those with mitochondrial disease. ![Scientific investigation of mitochondrial disease in the laboratory setting](https://www.mitoaction.org/wp-content/uploads/2023/01/DNA-Scientiest-working-in-Laboratory-with-Vials-1024x683.jpg) MitoAction and MitoCanada are committed to ensuring that patients and caregivers in the mitochondrial disease community have a voice in emerging research. Our latest article, **“Understanding Mitochondrial Transplantation: A New Frontier in Treating Mitochondrial Dysfunction,”** delves into the groundbreaking field of mito transplantation. Read the article below or [Click Here to Download the PDF](https://www.mitoaction.org/wp-content/uploads/2025/04/Understanding-Mitochondrial-Transplantation-FV2-1.pdf "Understanding-Mitochondrial-Transplantation-FV2"). ## Understanding Mitochondrial Transplantation: A New Frontier in Treating Mitochondrial Dysfunction In the last ten years or so, scientists have discovered, through *in vitro* (test tubes and culture dishes) and *in vivo* (within living organisms) studies, that mitochondria can be transferred from one cell to another, one tissue to another, and from one animal to another. Researchers hope to apply these methods for both primary mitochondrial disease and acquired mitochondrial dysfunctions in diseases such as Parkinson’s and dementia, including Alzheimer’s and cardiovascular disease. Although far from ready for large-scale human use, mitochondrial transplantation still requires significant research and testing, but holds great promise in providing a viable therapy option for many, including primary mitochondrial disease patients. #### How Mitochondrial Transplantation Works Mitochondrial transfer begins by taking a tissue sample (typically muscle tissue) from a donor or from an area of the body where tissues are not affected by damage or disease. Mitochondria are isolated from this tissue sample. The isolation process can be complicated and needs to be done rapidly to ensure the mitochondria remain intact and viable. It’s reported that isolating and preparing mitochondria for transfer can take anywhere from 2 hours to under 30 minutes, depending on the process used and the amount of mitochondria needed1. Once isolated, the mitochondria can be evaluated. Viable mitochondria are then ready to be transferred, by injection or infusion, into the bloodstream or into impaired or damaged cells, tissues or organs2. #### Pioneering Research in Mitochondrial Transplantation Dr. James McCully and his team at Boston Children’s Hospital are at the forefront of this research. Their groundbreaking work has focused on using mitochondrial transplantation to help pediatric patients with cardiac defects. Their approach involves: - Isolating healthy mitochondria from a patient’s own tissue - Injecting the mitochondria directly into damaged areas of the heart - Restoring energy production and promoting heart tissue repair This technique has the potential to improve outcomes for children undergoing heart surgery, especially those at risk of heart failure due to mitochondrial dysfunction. #### Clinical Trials and Future Prospects Clinical trials are underway to assess the safety and effectiveness of mitochondrial transplantation. Researchers are investigating key questions, such as: - How well do transplanted mitochondria integrate into cells? - Can they reliably restore energy production in diseased tissues? - Are there any safety issues? - What are the long-term effects of mitochondrial transplantation? The ultimate goal is to develop mitochondrial transplantation into a viable, widely available treatment for patients suffering from mitochondrial dysfunction. #### Monitoring and Enhancing Mitochondrial Transplantation To ensure the success of mitochondrial transplantation, researchers are developing real-time monitoring techniques. For example, a study introduced a pathway-specific reporter gene to image mitochondrial function in stem cells. This allows scientists to track how well-transplanted mitochondria adapt and function over time. Beyond monitoring, efforts are underway to enhance mitochondrial function, improving the overall success of transplantation therapies. #### The Future: Universal Access to Mitochondrial Therapy Imagine a future where mitochondrial transplantation is readily available to all patients in need. To achieve this, researchers are working to: 1. Develop large-scale methods for producing healthy mitochondria (bioreactors) 2. Create safe and effective delivery systems for various diseases 3. Ensure affordable and equitable access to treatment worldwide 4. Secure regulatory approvals for clinical use If successful, mitochondrial transplantation could revolutionize treatments for a multitude of conditions linked to mitochondrial dysfunction, offering hope to millions. #### Conclusion Mitochondrial transplantation is a rapidly evolving field with the potential to transform the treatment of mitochondrial diseases and other conditions caused by cellular energy failure. While still in the early stages of research and clinical testing, the progress made so far highlights the immense therapeutic potential of this approach. As scientists continue to refine techniques and delivery methods, improve real-time monitoring, and address key regulatory and scalability challenges, scientists are working to bring mitochondrial transplantation from the lab to the clinic setting. The next few years will be critical in determining how this technology evolves and, if successful, mitochondrial transplantation could shift the treatment paradigm for conditions previously considered untreatable, offering a powerful, restorative therapy for millions of patients worldwide. The journey ahead is complex, but the promise of harnessing cellular power at its source makes this an exciting and transformative frontier in medicine, and we want you to be part of this journey with the research community. #### Collaborators **MitoAction** is a nonprofit organization founded by patients, parents, and Boston hospital healthcare leaders who had a vision of improving quality of life for children and adults with mitochondrial disease. MitoAction’s mission is to improve the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, clinical research initiatives and by granting wishes for children affected by mitochondrial disease. **MitoCanada** is Canada’s only registered health foundation dedicated to transforming the lives of individuals, families and caregivers with mitochondrial disease. MitoCanada’s mission is to energize and support patients, families, and healthcare providers across Canada through education, support, awareness, and transformational research. They are a reliable and trusted source of information and support for Canadians impacted by mitochondrial disease. **Northwell Health** recognized an unmet need for mitochondria-targeted therapy and organized its inaugural Mitochondrial Transplantation and Next Generation Therapeutics Conference. The conference will take place April 27-29, 2025, at Hofstra University in Hempstead, Long Island. For conference details or to attend, please contact Eboni Eseetoo at eseetoo@northwell.edu. 1. McCully JD, Del Nido PJ, Emani SM. Mitochondrial transplantation for organ rescue. Mitochondrion. 2022 05; 64:27 -33. PMID: 35217248. 2. Tian-Guang Zhang, Chao-yu Miao, Mitochondrial transplantation as a promising therapy for mitochondrial diseases, Acta Pharmaceutica Sinica B, Volume 13, Issue 3, 2023, Pages 1028–1035, ISSN 2211-3835, https://doi.org/10.1016/j.apsb.2022.10.008 --- ### [Current FDA-Approved Treatments for Mitochondrial Disease](https://www.mitoaction.org/mitochondrial-disease/treatment/current-fda-approved-treatments-for-mitochondrial-disease/) **Published:** April 23, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Mitochondrial Disease Treatments](https://www.mitoaction.org/mitochondrial-disease/ "Back to Mitochondrial disease") # Current FDA-Approved Treatments for Mitochondrial Disease There are now FDA-approved treatments for some mitochondrial diseases on the market. ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Doctor-meeting-with-young-girl-and-mother-1024x682.jpg) It’s an exciting time for the mitochondrial disease community, as pharmaceutical companies are bringing new FDA-approved treatments for mito to market. There are also several promising treatments and therapies currently undergoing [clinical trials](https://www.mitoaction.org/clinicaltrials/). As the FDA approves new treatment options for mito, we will update this page. The following drugs and therapies have now been approved by the Food and Drug Administration (FDA) for the treatment of mitochondrial diseases: ### KYGEVVI: An FDA-Approved Treatment for TK2D **In November 2025, the U.S. Food and Drug Administration (FDA) approved KYGEVVI to treat TK2D in adults and pediatric patients who started to show symptoms when they were 12 years old or younger.** People with TK2D can’t properly make or maintain the DNA inside their muscle cells’ mitochondria. KYGEVVI contains two lab-made building blocks of DNA (pyrimidine nucleosides) called doxecitine and doxribtimine). When a person takes KYGEVVI, these DNA building blocks are taken up by their muscle cells and incorporated into the mitochondrial DNA. This helps restore the number of mitochondrial DNA copies in a cell, which is critical for muscle function. [**Learn more about TK2D—including treatment—on our Disease Fact Sheet page.**](https://www.mitoaction.org/conditions/tk2d-thymidine-kinase-2-deficiency/) ### FORZINITY: An FDA-Approved Treatment for Barth Syndrome **In September 2025, the U.S. Food and Drug Administration (FDA) approved the first treatment for Barth syndrome. FORZINITY (also known as elamipretide), is approved for people with Barth syndrome who weigh at least 30kg (just over 66 pounds).** Mitochondria need a special fat called cardiolipin to maintain their structure, stay organized, and work efficiently. In Barth syndrome, the damaged protein results in poor-quality (immature) cardiolipin. This lack of support means the mitochondria struggle to produce enough energy, leading to symptoms like weak muscles. Forzinity is designed to target the mitochondria, where it binds to cardiolipin. Forzinity helps the mitochondria create more energy, which in turn can lead to improved muscle strength and function. [**Learn more about Barth Syndrome—including treatment—on our Disease Fact Sheet page.**](https://www.mitoaction.org/conditions/barth-syndrome/) --- ### [Matthew Harty Mito Classic](https://www.mitoaction.org/events/matthew-harty-mito-classic/) **Published:** May 23, 2019 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Events](https://www.mitoaction.org/events/ "MitoAction Events") # Matthew Harty Mito Classic A street hockey tournament that brings middle and high school kids together to raise awareness for mitochondrial diseases and funds for summer camps and college scholarships. ![](https://www.mitoaction.org/wp-content/uploads/2024/03/2023-Mito-Harty-Classic-2-1024x768.webp) **Registration is open for the 13th annual Matthew Harty Mito Classic**! We are so excited to bring the middle schoolers and high schoolers together for our in-person street hockey games on Wednesday, April 15th! [Register](https://p2p.onecause.com/mitoclassic) ![](https://www.mitoaction.org/wp-content/uploads/2019/05/mharty-logo-print-1024x886.jpg) ### From Birthday Party to Fundraiser In 2008, Jack Pascucci, from North Andover, MA was in kindergarten and wanted to have a street hockey birthday party with his close friends. His celebration included shirts, a “concession stand,” an award ceremony, and Junior Hockey players volunteering as “coaches.” A tradition was born… Jack was always the captain of one of the hockey teams while his friend, Michael Harty, was the captain of the other. This led to renaming the event the “Jack and Mikey Birthday Classic” when the boys were in second grade. By sixth grade, Jack felt he had grown out of having birthday parties even though the same friends who had come to the event since kindergarten were begging him to continue the tradition. Then, in December 2013, the families suffered a terrible loss when Matthew Harty, Michael’s little brother, passed away from mitochondrial disease. Jack had a difficult time dealing his emotions. “His mind-set went from feeling helpless to hopeful as the idea of changing the birthday party to a fundraiser for Matthew came to mind,” said Kristen Pascucci, Jack’s mom. When word about the Matthew Harty Mito Classic spread, Bob Sweeney, the former Boston Bruins player who is now the director of The Bruins Charitable Foundation, was so impressed by Jack and Michael, he wanted to be part of the event. He offered to donate signed memorabilia and match donations for The Matthew Harty Camper Fund. The entire North Andover community joined in to celebrate Matthew and support other children who were suffering from mitochondrial disease. Now, ten years later, the Matthew Harty Mito Classic is a much anticipated event in the North Andover community. We are excited to expand the event as we partner with the North Andover Community Center and their student leaders who will join in to ensure that the Matthew Harty Mito Classic continues for years to come. ![](https://www.mitoaction.org/wp-content/uploads/2024/03/2023-Mito-Harty-Classic-4-1024x768.webp)![](https://www.mitoaction.org/wp-content/uploads/2023/01/2019-Matthew-Harty-MitoClassic-01-1024x768.jpg)![](https://www.mitoaction.org/wp-content/uploads/2024/03/2023-Mito-Harty-Classic-3-768x1024.webp)![](https://www.mitoaction.org/wp-content/uploads/2024/03/2023-Mito-Harty-Classic-2-1024x768.webp)![](https://www.mitoaction.org/wp-content/uploads/2024/03/2023-Mito-Harty-Classic-1-1024x768.webp) ## Thank you to our 2025 Matthew Harty Mito Classic Sponsors! #### Presenting Sponsor ![](https://assets.classy.org/5901498/e4bf620a-90c6-11eb-9777-0a58a9feac02.png)#### Gold Sponsors #### Silver Sponsors #### T-Shirt Sponsors ![](https://www.mitoaction.org/wp-content/uploads/2024/03/Screenshot-2024-03-27-at-7.34.05 PM.png) #### Awards Sponsor ![](https://www.mitoaction.org/wp-content/uploads/2026/04/image_6483441.png)#### In-Kind Sponsor ## In Honor of Matthew ![](https://assets.classy.org/8871707/10e01fe4-1aa6-11e9-83b1-0a12aa83d70c.jpg) 2014 was the year Matthew Harty’s parents, Paul and Sarah, were going to send Matthew to Camp Korey in the summer. “We wanted to send Matthew to camp because we wanted him to feel that experience of just being a kid at camp, like everybody else,” Paul said. But, Matthew never got the chance. Just days after his 8th birthday, Matthew died of mitochondrial disease. MitoAction works tirelessly to support kids like Matthew, and in his honor, to ensure all kids with mitochondrial disease have an opportunity to attend summer camp or attend college. Proceeds from this event benefit the Matthew Harty Camp and Scholarship Fund, which sends children with mitochondrial disease to summer camp and provides college scholarships for Mito students and a student from North Andover High School. --- ### [Another Helping](https://www.mitoaction.org/join-the-cause/giving/anotherhelping/) **Published:** March 8, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Giving](https://www.mitoaction.org/join-the-cause/giving/ "Giving") # Another Helping Help raise awareness and money for Dalia’s Wish, one cupcake at a time! [Order / Donate](https://give.mitoaction.org/give/526442/#!/donation/checkout) ![](https://www.mitoaction.org/wp-content/uploads/2023/02/Another-Helping-Featured-Image-1024x683.jpg) ![](https://www.mitoaction.org/wp-content/uploads/2021/03/Another-Helping-Collage.png) When Adam was diagnosed with mitochondrial myopathy in 2019, his daughter Emma tried to help out around the house the best that she could. She has always had a strong passion for helping others, and this made her realize that she wanted to help people with mitochondrial diseases as well. Emma believes that all parts of a patient’s journey are important, whether they were recently diagnosed, have been diagnosed for a long time, or are still navigating the diagnostic journey! ![](https://www.mitoaction.org/wp-content/uploads/2021/03/image2-472x1024.jpeg)Emma spent some time researching the different programs that MitoAction offers and found ways to support patients of all ages and in all stages of their journey. She then realized that she could use her love for baking to spread awareness and all donations received from cupcake orders would benefit mitochondrial disease patients. [Order / Donate](https://give.mitoaction.org/give/526442/#!/donation/checkout) **Together, our impact can be amazing and help so many people! Donations to Another Helping will go towards Dalia’s Wish. Check back regularly to view Emma’s progress!** ## Another Helping FAQs How Does It Work?We’re glad you asked! There is a minimum suggested donation of $15.00 per (6) pack of cupcakes ordered, but MitoAction gratefully accepts donations of any amount. You can choose to pick up the cupcakes and enjoy them yourself or have them donated to a local police station, fire station, school, hospital, etc. Where Is the Pick-Up Location?![](https://www.mitoaction.org/wp-content/uploads/2021/03/Screen-Shot-2021-03-16-at-11.08.53-AM.png)For now, all cupcakes can be picked-up at the Target on Eagle & Chinden in Boise, ID between 9:00-10:00am on the weekend or between 6:00-7:00pm on weekdays. Your pick-up day/time will be selected at checkout. Here is a map of the specific location in the parking lot. Can I Just Make a Donation?Of course you can! When you go to the order form, there is a field to enter the amount you wish to donate, and another field to enter how many packs of cupcakes you would like. If you just wish to donate and not order cupcakes, please put “0” in the quantity field. Which MitoAction Programs Will My Donation Support?Great question! Your donation and order from Another Helping will support the Dalia’s Wish program. In loving memory of Dalia Falggert, the Dalia’s Wish program helps send kids with mito and their families to the Give Kids The World Village in Orlando, FL. This wishtrip was one of Dalia’s favorite memories, which is why MitoAction has dedicated the wishtrip program to her. Your donation provides crutial funds to help send another deserving family to Florida! What Kind of Cupcakes Are Available and What Are the Ingredients?At this time, we offer red velvet cupcakes with cream cheese frosting! Yum! Cupcakes contain: dairy, wheat, eggs, and corn. Cupcakes are not made in a professional kitchen, cross contamination may occur. For the complete list of ingredients, please email: . ![](https://www.mitoaction.org/wp-content/uploads/2021/03/AH_Sticker-1-300x300.jpg) --- ### [Donate to MitoAction](https://www.mitoaction.org/join-the-cause/giving/donate/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Giving](https://www.mitoaction.org/join-the-cause/giving/ "Giving") # Donate to MitoAction Your gift supports children, adults and families affected by mitochondrial disease! [Make a Donation](https://p2p.onecause.com/supportmitoaction) ![](https://www.mitoaction.org/wp-content/uploads/2024/11/Hands-Holding-Donation-Jar-—-MitoAction-—-Giving-Tuesday-1024x683.webp) Your gift supports children, adults and families affected by mitochondrial disease! Donations to MitoAction are tax-deductible (federal tax ID: 55-0899427). ### Donate Online You can make a secure donation online using this link: ### Donate by Mail To make a gift by mail, please send your check payable to MitoAction to P.O. Box 310, Novi, MI 48376. For questions about donations, please call Kira Mann at (888) 648-6228. --- ### [FAOD Life Hacks](https://www.mitoaction.org/fatty-acid-oxidation-disorders/day-to-day-with-faod/faod-life-hacks/) **Published:** December 20, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Day to Day with FAOD](https://www.mitoaction.org/fatty-acid-oxidation-disorders/day-to-day-with-faod/ "Day to Day with FAOD") # FAOD Life Hacks Members of our community share their tips for making life with FAOD just a little bit easier. ![](https://www.mitoaction.org/wp-content/uploads/2024/07/Young-boy-and-his-mother-meeting-with-a-doctor-1024x683.webp) FAOD Life Hacks are short 30-second to 2-minute “words of advice” that come from personal experience from those in our FAOD community. As patients and parents, we have learned the “tricks of the trade” as we have walked on this FAOD journey. These FAOD Life Hack videos give us the space to share these tips and tricks. https://www.youtube.com/watch?v=Nzunp6f1lLc&list=PLTrGsiiotyLe_BbVXtsE7w-DEQHrOORHJ&index=3 My “Go Bag” by Stella Mudd (LCHADD), Sharickah and Canaan Rogers (VLCADD), and Alex Salser (LCHADD) https://www.youtube.com/watch?v=CaWa4buU-gA&list=PLTrGsiiotyLe_BbVXtsE7w-DEQHrOORHJ&index=6 Travel Hacks by Stephanie and Christopher Harry (LCHADD), Luke Folcher (LCHADD), and Sharickah and Canaan Rogers (VLCADD) https://www.youtube.com/embed/FDI-yOjfuR8 Easy Bake Cooking by Stella Mudd (LCHADD) https://www.youtube.com/embed/eGhxackFCdc My favorite thing to do is … by Luke Folcher (LCHADD), Canaan Rogers (VLCADD), Alexis Abrams (LCHADD), Christopher Harry (LCHADD), and Hunter Abrams (LCHADD) https://www.youtube.com/embed/jyIZwQ9VjWA Snack Hack by Margo, Camille, and Corinne Stabo (MCADD), Alex Salser (LCHADD), and Sharickah and Canaan Rogers (VLCADD) https://www.youtube.com/watch?v=yjR2r6F8RVw&t=35s Sport and Exercise Hack by Christopher Harry (LCHADD), Fred Jacobowitz (CPT 2 Deficiency), and Ali Hamadeh (VLCADD) https://www.youtube.com/watch?v=CP47yyn4PXU&list=PLTrGsiiotyLe_BbVXtsE7w-DEQHrOORHJ&index=7 FAOD Traveling Hacks – IMC 2025 https://youtu.be/1OfM5NByh5k?si=9vfYmXlCFEHwWcu2 FAOD Eating Out Hacks, Part 1 – IMC 2025 https://youtu.be/tu3D0LlbuBQ?si=HiFs2q8813sJtqtL FAOD Eating Out Hacks Part 2 – IMC 2025 https://youtu.be/ruMgmqNp6vQ?si=kYzVJWNqEtmXjBiE FAOD Navigating Events Hacks – IMC 2025 --- ### [Exercise with Mito](https://www.mitoaction.org/day-to-day-with-mito/exercise-with-mito/) **Published:** September 23, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Research has shown that both endurance (such as running) and resistance (such as weight lifting) exercise can benefit patients with mitochondrial disease. Some benefits include an increase in mitochondrial health, antioxidant and muscle mitochondrial enzyme activity, oxygen uptake, and muscle strength, as well as improved clinical symptoms and a decrease in resting and post-exercise blood lactate levels. The majority of research has shown exercise that is slowly increased can be safe for patients with mitochondrial diseases. Exercise should begin with short duration and low intensity. Exercise intolerance is common with mitochondrial disease, but even patients who have a difficult time exercising should still be encouraged to exercise beginning at their current level of function. Patients should consult their physician before beginning to exercise as cardiac or other evaluations may be needed. Physicians may recommend supervised progressive exercise aimed at improving function. ## FAQs About Exercise with Mito [Kimberly Serra,](https://www.mitoaction.org/bios/kimberly-serra-pt-dpt-mtc-cscs/ "Kimberly Serra, PT, DPT, MTC, CSCS") PT,DPT, MTC, CSCS answers some of the most frequently asked questions about exercising with mito: What is physical therapy and how can it help?Physical Therapy can help those in pain or experiencing loss of function due to illness or disease to restore functional motion needed to achieve ADLs (Activities of Daily Living). Specifically, Mito patients (children and adults) can have impaired function and strength as well as stamina and endurance issues. A physical therapist will first perform an evaluation in order to develop a specialized treatment plan which could include strategies, for example, to help improve gait, balance or endurance. The initial PT visit may last about an hour is likely to include a complete history (signs and symptoms of disease as well as other accompanying ailments unique to the patient). This will give the PT a full picture of the patient. The patient’s energy level may determine the extent of the evaluation – and if the patient cannot endure a full hour, then several visits might be necessary. Other things to look evaluate in the initial visits are muscle tone and gait (how a person walks). What qualifications should a Mito patient look for in a Physical Therapist?Look for a therapist who has several years of experience and who, ideally, has some experience with mitochondrial disease as treatment for a Mito patient will be quite different than that for a post-surgical patient. The PT should be willing to work with you on an individual basis, one to one, so that you see the same therapist each time. A certified manual therapist is also an option. The PT should be willing and able to work with you individually and understand the slow progress that is typical for children and adults with Mito, and consequently set very gradual goals. Ideally, the office staff should also be flexible and understanding; Mito patients often have to cancel appointments at the very last minute because of symptoms which are quite unpredictable. Begin by researching the physical therapists in your area, and have your PCP talk with the therapist. Your PCP (and your specialists) can help focus on the special medical needs and goals. A team approach is important here, so if the patient is not responding or progressing in PT, others may have input into what to do next. What is the difference between conditioning and strength training?Conditioning helps a person’s endurance or stamina so they can withstand activity, whereas strength training provides general toning of muscle groups. How can you plan exercise when Mito symptoms are so unpredictable?PT’s can adjust the program so that one day when the patient feels well, the program can go forward, but on a “bad day” exercise can be limited to postural exercises or very gentle movements. The key is to plan on very gradual goals, knowing that there may be setbacks. In the past 3-5 years there has been a shift towards the idea that exercise is both safe and good for Mito patients. This is true – but exercise must be managed correctly. Begin with very low level exercises, such as taking 5 deep breaths or holding a stretch for 5 seconds. Pool therapy can also be helpful because it puts less stress on joints because of the buoyancy of water, but again, one cannot stay in the pool for too long (5-10 minutes to start) because of the expenditure of energy. A recumbent bike (non-weight bearing) for 1-2 minutes is also useful. Use of weights should be done very gradually; for example, complete a range of motion (ROM) for just 5 repetitions to start and build on that. As more repetitions are possible, adding some resistance and additional weight can be attempted – but again – very gradually. Due to the variability of Mito symptoms, exercise tolerance can also be quite variable. One those days when a person feels good, he/she might do too much, exceeding their normal amount of exercise, and “pay for it” the next day. Therefore it is essential to balance and manage necessary versus unnecessary energy expenditures. It is also helpful to keep a chart or diary for a week of all of your activities in order to review total energy expenditures and also note when your body seems to be at its lowest energy level. This can help you plan activities for the future. What about pain?Patients should never exercise through pain. If you have pain, stop! Sometimes a short rest is necessary, and yet other times you may need to wait and try again at the next session. The exercise plan can be modified. Often there is variability in a patient’s ability to exercise, and there are typically “bad” times of the day versus “good” times of the day. Schedule exercise and physical therapy when it is best for the unique needs of the patient (this is often overlooked for kids in school.) Often it is best to split the exercises up – some in the morning and some in the afternoon – or small increments spread throughout the day. **Other considerations** Food and fluids are other considerations. A small snack with protein is often good prior to exercising and hydration is ALWAYS important both before and during any exercise program. What are ISOMETRIC exercises?Isometric exercises are a type of strengthening exercise where the joint or muscle does not move, but the muscle contracts. It is a good way to activate the muscles. The muscle can contract for 5-10 seconds (hold the contraction), then rest. These can be done standing, sitting or even lying down. Wheelchair bound or bed-bound people can do these kinds of exercises as well as ROM exercises, then increase gradually as their strength improves. What are cardio exercises?Patients with Mito commonly have cardiac (dysautonomia) issues so they should do only those exercises that they can tolerate well. Cardio exercise should be approved first by the patient’s physician. Upper body exercises may be difficult, but exercises where that take place sitting down down, like a pedal bike or even just peddling movement can be done. Any change in status should warrant stopping the exercise program and consulting the physician. How long should one wait to restart an exercise program after being ill?This will depend on the problem, but the Mito patient should be cleared by their doctor before resuming their PT/exercise program. Keep in mind, Mito patients often take 2-3 times longer to recover from an illness than others, even from a common cold. Does it matter how long you exercise?No! Mito patients often worry that they can only exercise for 15 minutes a day. Any amount of time is good – even just 5 minutes. This is great to get things started, stimulate muscles, gain strength and gain stamina. Even a little bit consistently has a great benefit! Starting with a very little and building up very gradually is the way to go. You could do 5 minutes a day, then build to 15 minutes a day, then build to 15 minutes several times during the day. When should you stop exercising*?*When someone has a **muscle spasm**, they should stop exercising. Depending on the PT, soft tissue work may help, or gentle stretching for 5-10 seconds. Wait to resume until the spasm is over. When someone feels a **burning** in their muscle, this signals a **buildup of lactic acid** and the person should stop exercising here as well. This particular exercise may have to be eliminated for awhile in order to insure no lactic acid buildup. The burning feeling is different from just working the muscle; it is a distinct feeling of burning. Sometimes light yoga or gentle stretching can help. Hydration and deep breathing during exercise has also been shown to help pain due to lactic acid buildup. When someone has a **muscle spasm**, they should stop exercising. Depending on the PT, soft tissue work may help, or gentle stretching for 5-10 seconds. Wait to resume until the spasm is over. When someone feels a **burning** in their muscle, this signals a **buildup of lactic acid** and the person should stop exercising here as well. This particular exercise may have to be eliminated for awhile in order to insure no lactic acid buildup. The burning feeling is different from just working the muscle; it is a distinct feeling of burning. Sometimes light yoga or gentle stretching can help. Hydration and deep breathing during exercise has also been shown to help pain due to lactic acid buildup. Spasms or cramps can be due to inadequate hydration or depletion of sodium and/or potassium. It is important to consult a metabolic dietician for Mito patients who have these particular issues. It is important to maintain good communication between the PT and the patient so that these occurrences are reported and exercise can be stopped or altered. Education about these issues is very important. When other injuries or impairments develop, for example a broken wrist, the physical therapist will manage the exercises for that particular impairment the same as for any patient, but may have to make modifications due to the mitochondrial disease. Exercises for mito are to help the whole body gain strength and endurance. Given that Mito is chronic, what are the long term goals of physical therapy?PT’s goals are for a person to be able to accomplish their ADL’s comfortably. This may take a long time. Often patients will say, “I have been going to PT for 6 months and there is no change!” At some point a re-evaluation may be necessary, or even a change of therapist. But often patients have fluctuations in their energy level and that is why it may take a while to reach a maintenance level. Often it is the insurance coverage that determines when maintenance level is reached. Coverage varies state to state, and some companies have a limit of 20 pt visits per year. An important point to make here is that Mito patients who have physical therapy should have a re-evaluation every 6-8 weeks. Because a cold or other viral infection can set a patient back considerably, these re-evaluations are essential. Communicating with both your PCP and specialists and with the physical therapist is important. High School Medically Exempt PoliciesIn high school, students with Mito can get a medical exemption from the physical education requirement. It is important, however, for parents to inquire whether the credits for PE are required for graduation. If so, a student may not have enough credits to graduate because they did not take PE, even though they were “exempt.” Requirements vary from state to state, but parents need to be aware of this issue. --- ### [Matthew Harty Camper Fund Scholarship Application](https://www.mitoaction.org/programs-support/mitoaction-programs/mhcf/scholarship/matthew-harty-scholarship-application/) **Published:** April 19, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Sorry, applications for the 2026 scholarships have closed. --- ### [CPEO & Me Support Call](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/cpeo-me-support-call/) **Published:** March 14, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2023/08/CPEO-ME-1024x1024.png)MitoAction’s “CPEO & Me Support Calls” are a special place reserved for individuals impacted by CPEO to share about their experiences and connect with others on a similar journey. If you are a patient, parent, caregiver, friend, or loved one, feel free to join us for a monthly support call to discuss CPEO. CPEO & ME Support Calls are the first and third Thursdays of each month. [Register for upcoming CPEO & Me Support Calls](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) --- ### [MELAS Support Call](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/melas-support-call/) **Published:** February 4, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/02/1.png)MitoAction’s MELAS Support Call is a welcoming space for patients, caregivers, and family members to connect with others on their journey with MELAS. These calls offer an opportunity to share experiences and insights, ask questions, learn from one another, and offer encouragement in a supportive, understanding community. The MELAS Support Calls are held on the second Tuesday of each month at 12pm (EST). [Register for upcoming MELAS Support Calls](https://mitoaction-org.zoom.us/meeting/register/3GlLPS3hSYqYQEn5DELtag) --- ### [POLG Support Calls](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/polg-support-calls/) **Published:** January 14, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/12/POLG-Support-Call-Website-graphic-1024x1024.png)Join MitoAction once a month for our virtual POLG Support Call. This special space is for patients and caregivers in the POLG community to come together to share their hearts and stories, and tips and tricks with daily living, so as to encourage and support each other. Together, we move forward stronger. ### POLG Support Calls POLG Support Calls are held on the second Thursday of the month at 11 a.m. EST. [Register for POLG Support Calls](https://mitoaction-org.zoom.us/meeting/register/jhpy_qIQQ5yyHuq_9Qz19A) [![](https://www.mitoaction.org/wp-content/uploads/2025/10/image-6-1-1024x263.png)](https://polgfoundation.org/)**We are thrilled to be collaborating with The POLG Foundation for this wonderful support call series!** --- ### [Our Space: A Space for Young Adults](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/our-space/) **Published:** March 14, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Support-Calls-Our-Space-1024x1024.webp)Join young adults with Mito and FAODs to connect, network, and hangout! These meetings will occur the third Tuesday of the month at 8:30 pm (EST). [Register for our upcoming Our Space Support Calls](https://mitoaction-org.zoom.us/j/84698703323?pwd=cjlQQjNpdEIvUWl0VklVS212czR6QT09) --- ### [Take Legislative Action](https://www.mitoaction.org/join-the-cause/raise-your-voice/take-legislative-action/) **Published:** December 14, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Raise Your Voice](https://www.mitoaction.org/join-the-cause/raise-your-voice/ "Raise Your Voice") # Take Legislative Action Educating yourself how to better interact and advocate for policy change can help you to feel more confident about where you stand on certain issues and what role you may serve. ![](https://www.mitoaction.org/wp-content/uploads/2025/03/Raise-Your-Voice-—-Woman-at-the-US-Capitol-—-MitoAction-1024x683.webp) Taking legislative action can be intimidating and often serves as a barrier for people who want to become more involved with policy change. Taking an active interest in legislature is a great first step and we are here to help arm you with the resources you may need to become more involved. Educating yourself how to better interact and advocate for policy change can help you to feel more confident about where you stand on certain issues and what role you may serve. Our goal is to provide you with not only a basic understanding of government structure, but also help you to understand the entire process and how you can interact directly with your local representatives to specifically address certain issues that are important to you. Your voice is important and by educating yourself, you can make a difference. Below are resources and ways for you to take an active role in legislative issues important to you and the mitochondrial disease community: - [Find the contact information for your representatives](https://rareaction.org/take-action/#/legislators) - [Contact your Senator](https://www.senate.gov/general/contact_information/senators_cfm.cfm) - [Contact your senators on Twitter and Facebook](http://rareaction.org/daysofaction/state-by-state-senator-governor-information/) - [Look up key legislation by state that impacts rare disease](https://rareaction.org/take-action/#/) #### Elamipretide Action Week August 18-22, 2025 ![](https://www.mitoaction.org/wp-content/uploads/2025/08/FINAL-Schedule-of-Events-1024x1024.png)The FDA has refused Stealth BioTherapeutics’ request to reconsider its application for elamipretide—despite earlier indications from FDA reviewers that such a request was appropriate. Instead, the FDA has instructed Stealth to resubmit under the accelerated approval pathway with a 6-month review timeline, the longer of two options. This delay, coupled with financial constraints facing Stealth, puts the future of elamipretide—and the Expanded Access Program (EAP) through which patients currently receive it—at serious risk. Without immediate action or a shortened review, access could end as soon as September, leaving individuals with Barth syndrome and other mitochondrial diseases without the only treatment shown to improve symptoms. ***We are calling on the community to advocate by participating in Elamipretide Action Week and the social media #ShotsForShotsChallenge***. We have outlined a week of ways to participate in advocacy from anywhere, from August 18 through 22, to convey the urgency and to keep elamipretide at the forefront. Every voice matters—together, we can push for the urgent action needed to preserve access to this critical therapy. **Click [HERE](https://www.barthsyndrome.org/advocacy/elamipretide-advocacy.html) to see how you can participate August 18-22 on social media and through legislative action**! --- ### [FAOD Resources](https://www.mitoaction.org/fatty-acid-oxidation-disorders/day-to-day-with-faod/faod-resources/) **Published:** February 7, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Day-to-Day with FAOD](https://www.mitoaction.org/fatty-acid-oxidation-disorders/day-to-day-with-faod/ "Day to Day with FAOD") # FAOD Resources No matter where you are on your journey with FAOD, MitoAction is committed to connecting you with the most comprehensive resources available as well as a network of support. ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-MitoSocials-Young-girl-and-her-mother-do-an-arts-and-crafts-project-1024x683.webp) No matter where you are on your journey with Fatty Acid Oxidation Disorder, MitoAction is committed to connecting you with the most comprehensive resources available as well as a network of support. We exist to help you on your journey and to ensure you that you are not alone. Whether you are newly diagnosed, still unsure of your diagnosis, caring for a child living with and FAOD, or a caregiver, family member, or friend, we are here for you. ### MitoAction Resources - [FAOD New Patient Kit](https://www.mitoaction.org/education/new-patient-kit/) - [FAOD Support Calls](https://www.mitoaction.org/programs-support/weekly-support-calls/faod-support-calls/) - [Monthly Expert Series](https://www.mitoaction.org/education/monthly-expert-series/) - [MyMito Mobile App](https://www.mitoaction.org/mitoaction_mobile/) - [MitoAction Events Calendar](https://www.mitoaction.org/join-the-cause/upcoming-events/) - [FAOD 101](https://youtu.be/yubPSlORl28) - [Disability Benefits & Planning Resources](https://www.mitoaction.org/wp-content/uploads/2021/07/WorthingtonHines-Resources.pdf) - [Parenting a Child with a Rare Disease Tip Sheet & Resource Page](https://www.mitoaction.org/wp-content/uploads/2021/07/Parenting-a-Child-with-a-Rare-Disease-Tip-Sheet-and-Resource-Page.pdf) - [Accessible Mindfulness, Meditation & Yoga Resources](https://www.mitoaction.org/wp-content/uploads/2021/07/AH-Accessible-Wellness-Infographic.pdf) ### Common Labs for FAODs - [Printable PDF of Explanations of Common Laboratory Tests in FAODs](https://www.mitoaction.org/wp-content/uploads/2021/07/Laboratory-Testing.pdf) - [Laboratory Testing for FAOD in Routine & Emergency Settings – Dr. Nicola Longo](https://youtu.be/y4livztg-Ls) ### You Won’t Miss the Fat - [Printable PDF of You Won’t Miss the Fat Tips & Recipes](https://www.mitoaction.org/wp-content/uploads/2021/07/You-Wont-Miss-the-Fat-Tips-and-Recipes-.pdf) - [You Won’t Miss the Fat – Cooking One Meal for the Whole Family – Stephanie Harry & Beth Folcher](https://youtu.be/QUoNhCta4LA) - [FAOD Family Recipes](https://www.mitoaction.org/wp-content/uploads/2025/07/IMC-Cookbook-2025.pdf) ### Clinical Trial Information - [Reneo Pharmaceuticals – Forward Study](https://www.mitoaction.org/wp-content/uploads/2021/07/RENEO_FORWARD-Study.pdf) - [Ultragenyx – LCFAOD Disease Monitoring Program (DMP)](https://clinicaltrials.gov/ct2/show/NCT04632953?term=disease+monitoring+program&draw=2&rank=5) ### Kids’ Resources - [Superhero Mask](https://www.mitoaction.org/wp-content/uploads/2020/07/Superhero-Mask.pdf) - [You Are a Superhero](https://www.mitoaction.org/wp-content/uploads/2021/07/YOU-are-a-SUPERHERO.pdf) - [Mito Man Coloring Page](https://www.mitoaction.org/wp-content/uploads/2021/07/MitoMan-Coloring-Page.pdf) - [FAOD Bingo Cards](https://www.mitoaction.org/wp-content/uploads/2020/07/Bingo-Cards.pdf) - [Printable PDF of Let’s Cook – Making a Healthy Snack with a Friend](https://www.mitoaction.org/wp-content/uploads/2021/07/Another-Helpng-Recipe-Cards-Indiviudal-Pages.pdf) - [My Special Body Book Order Form](https://www.mitoaction.org/wp-content/uploads/2021/07/My-Special-Body-Order-Form.pdf) --- ### [Travel](https://www.mitoaction.org/events/internationalmetabolicconference/travel/) **Published:** October 23, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # Travel Join MitoAction and the International Network for Fatty Acid Oxidation Research and Management (INFORM) for the 6th Annual International Metabolic Conference for Fatty Acid Oxidation Disorders in Detroit, Michigan, on July 25-27, 2025. [Hotel Information](#hotel) [Things to Do](#things-to-do) [Restaurants](#restaurants) ## IMC Scholarship The IMC Scholarship is available to help cover travel costs to the conference and is available only to first-time conference attendees. To apply, [please click here](https://www.mitoaction.org/events/internationalmetabolicconference/imc-scholarship-application/ "2025 IMC Scholarship Application"). ## Hotel Information **Stay at the Detroit Marriot Southfield through MitoAction’s room block**! **Click [HERE](https://www.marriott.com/event-reservations/reservation-link.mi?id=1740806060781&key=GRP&guestreslink2=true&app=resvlink) to reserve your room!** - 27033 Northwestern Hwy, Southfield, MI 48034 - MitoAction room block rate: $128.00/night - Book by July 11, 2025 To get updates, sign up for our [mailing list here](https://www.mitoaction.org/newsletters/newsletter-signup/ "Newsletter Signup") or join our [MitoAction FAOD Families](https://www.facebook.com/groups/264590894584532/) Facebook Group and “like” the [Conference](https://www.facebook.com/InternationalMetabolicConference/?ref=br_rs) Facebook Page. ## Things to Do in the Area Provided by Becky Noffsinger, FAOD Conference Committee Member, For anyone planning to extend their conference trip to a vacation in Michigan, late July is peak season and Lake Michigan is perfect this time of year. Temperatures are generally in the 80s and low 90s, cooler at night, and humid. Here’s a summary of popular places on the west side of the state; if you have specific questions about any of these let me know and I’ll help if I can. In general, you’ll want to book camping and rentals as soon as possible. #### “Downstate” **South Haven, Holland and Grand Haven** All three of these small cities are on Lake Michigan’s shore and have beaches and trails for biking/walking. They are more populated than up north, but that means there are plenty of restaurants and shopping and things to do. They all have state campgrounds right next to the water, within a few steps of the beach. You’ll pay for parking and access to most beaches here. **Muskegon: Hoffmaster State Park** We used to live near here and although Muskegon isn’t my favorite city, the state park is exceptional. The state campground will be closed starting July 7, but there are private campgrounds nearby. **Silver Lake State Park, Mears State Campground, Pentwater area** This is a very popular area and includes a huge expanse of sand dunes, some that allow off-road vehicles where you can rent dune buggies for the day. Pentwater is a lovely town nearby with miles of beaches. #### “Up North” **Ludington** Ludington has it all – beaches, shopping, state park, fishing, canoeing, and it is a bigger city without feeling crowded. It’s the first place most of us Michiganders consider “up north”, where there’s a different vibe (more relaxed, less populated, slower pace) than downstate. I’ve not visited the state campground, but it has a very good reputation. **Cadillac and Manistee National Forest** This isn’t on the Lake Michigan shore but is a very popular camping and gaming area. Cadillac sits on Mitchell Lake and the national forest has some really neat camping options. **Hartwick Pines State Park** Near Grayling in the center of the state, not close to Lake Michigan, but this is a very cool place to learn about old growth forests. They have a campground as well. We took the kids a few years ago for the day and the ranger-led activities are a lot of fun. **Manistee** Manistee has a vibrant arts community (the Ramsdell Theater is gorgeous), good restaurants, and beaches. No state parks here, but there are plenty of private campgrounds. **M-22** This state 2-lane highway follows the lakeshore, from Muskegon all the way north to Traverse City, and is considered one of the prettiest drives in the state. There are plenty of small towns along the way and you might find a small beach or two where it’s easy to jump out of your vehicle and into Lake Michigan. Bear Lake has a couple of Amish grocery/furniture stores, and Arcadia is very artsy with a public beach. **Up North Beaches** Once you get past Manistee, every town and many places in-between have little, locally governed beaches that are easily accessible and don’t always charge for parking. Some are roads that simply dead end at the beach—you can park on the shoulder and walk to the water. Others have playgrounds nearby and picnic tables and grills for picnics. If you’re feeling adventurous, some of our best memories are from beach-hopping up and down the lakeshore. Empire’s beach was my favorite when the kids were little because it had a nice playground, a small inland lake with a dock they could jump off and play in shallow water, a picnic area with grills, and a beach on Lake Michigan all within a small area. **Frankfort / Elberta** Full disclaimer: this is where Glenn grew up and where we lived when the kids were little, so we are completely biased. Frankfort is a small town on the north side of Betsie Bay (the deepest bay in Michigan) that gets very busy in summer. Elberta is a teeny tiny village on the south side of the bay with our favorite beach in the world. There are a lot of VRBO rentals ($$$) in summer and an RV park just outside of town, plus Harbor Lights hotel right on the beach and Crystal Mountain Resort about 20 minutes away. There are a couple of local campgrounds too. The beaches and parking in both towns are completely free, but parking spaces are limited. The Benzie Bus runs a free shuttle in summer too. Sleeping Bear Dunes is within an hour from here and makes a great day trip (see below). **Cherry Bowl Drive-In Theater** Just north of Frankfort is the Cherry Bowl Drive-In theater, an old-fashioned 50’s style drive in movie theater. Highly recommended! **Sleeping Bear National Lakeshore & Platte River Campground** You can easily spend several days at the Sleeping Bear Dunes National Park. Platte River Campground is our favorite place to camp, but reserve early (spots open for reservations 6 months ahead of dates). Pierce Stocking Drive is great because it’s all driving with little stops along the way with great views (I.e. no long hikes). Glen Arbor is a walk back in time (check out the blacksmith and lifesaving station demos), and there are a lot of fishing and canoeing options. **Traverse City** Bigger city with lots to do, great restaurants, boating, beaches, wineries, shopping, etc. **Leelanau Peninsula** Gorgeous, worth exploring little towns and beaches for a day or two. Check out Christmas Beach for Petoskey stone hunting! **Charlevoix & Petoskey** These are more popular lakeshore communities north of Traverse City. I haven’t spent a lot of time in these towns, but they have all the things you want in an up north trip. **Mackinac Island, Mackinaw City and The Bridge** This is very much worth the drive. Mackinac Island is a motor-free island accessible by ferry from Mackinaw City or, from the Upper Peninsula, St. Ignace. We usually park in Mackinaw City and ferry from there. Once on the island the Main Street has lots of touristy shops (fudge!) and a historic fort to explore. Outside of the main town area there are a lot of beautiful views, but it’s a lot of walking. You can bring your own bikes or rent them by the hour, or rent a horse-drawn carriage, but for first-time visitors just riding the ferry and exploring the main town is worth the trip. It’s really fun to stay overnight, but expensive, so most people stay in hotels or camp near Mackinaw City. There is a state campground near Mackinaw City in the lower peninsula, but I’ve not been there. Big Mac, or “The Bridge”, is a 5-mile span connecting the lower and upper peninsulas. Even if you just pay to drive across to the U.P. and come back again, it’s a cool experience. #### The Upper Peninsula If you’re really in for a road trip and want to explore the Upper Peninsula, it’s amazing! Let us know if you want to go and we can try to help. Tahquamenon Falls, Pictured Rocks, Marquette, and the Keweenaw Peninsula are popular places to explore nature and get outside. ## FAOD-Friendly Restaurants in the Area ![Logo - Zao Jun](https://www.mitoaction.org/wp-content/uploads/2024/10/Logo-Zao-Jun.png)#### Zao Jun New Aisan & Sushi 6608 Telegraph Rd, Bloomfield Hills, MI 48301 *8 min drive from Detroit Country Day School and 9 min drive to Marriott Hotel* **Phone:** (248) 949-9999 **Hours:** 11:30 a.m. – 10 p.m. **Website:** ![](https://www.mitoaction.org/wp-content/uploads/2024/10/Logo-Chipotle-1024x1024.png)#### Chipotle 26147 Evergreen Rd Southfield, MI 48076 *8 min drive from Detroit Country Day School and 9 min drive to Marriott Hotel* **Phone:** 248-353-3448 **Hours:** 10:45 a.m. – 10 p.m. **Nutrition Info:** [https://www.chipotle.com/](https://www.chipotle.com/nutrition-calculator) ![](https://www.mitoaction.org/wp-content/uploads/2024/10/Logo-Panera-Bread.png)#### Panera Bread 28681 Telegraph Rd Southfield, MI 48034 *11 min Drive From Detroit Country Day School and 7 min drive to Marriott Hotel* **Phone:** (248) 352-0936 **Hours:** 6 a.m. – 10 p.m. **Nutrition Info:** [https://www.panerabread.com/](https://www.panerabread.com/content/dam/panerabread/documents/c2-24-nutrition-guide.pdf) **Notes:** You can build your own salads and customize as needed! ![](https://www.mitoaction.org/wp-content/uploads/2024/10/Logo-Beaus-Grillery.png)#### Beau’s Grillery 4108 W Maple Rd Bloomfield Hills, MI 48301 *9 min drive from Detroit Country Day School and 9 min drive to Marriott Hotel* **Phone:** (248) 626-2630 **Hours:** 11 a.m. – 10 p.m. **Website:** **Notes:** Can accommodate steamed shrimp and steamed veggies, boiled chicken breast and custom salad. ![](https://www.mitoaction.org/wp-content/uploads/2024/10/Logo-Pho-ChopstiX.png)#### Pho ChopstiX — Southfield, MI 28308 Telegraph Rd Southfield, MI 48034 *6 min drive from Detroit Country Day School and 6 min drive to Marriott Hotel* **Phone:** (947) 282-8535 **Hours:** 11 a.m. – 8:30 p.m. **Website:** **Notes:** Rice has no oil; Can request special dish of steamed rice with steamed veggies and shrimp. They have a sauce with no oil. You can also request pho with veggie broth instead ofmeat broth. ## Registration is Now Live! Register now for the 2026 International Metabolic Conference For Families & Individuals Impacted by Fatty Acid Oxidation Disorders! [Register Now!](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) --- ### [Dalia's Wish Trip Nomination](https://www.mitoaction.org/dalias-wish-trip-nomination/) **Published:** June 10, 2025 **Author:** Emily Grandahl --- ### [2025 IMC Scholarship Application](https://www.mitoaction.org/events/internationalmetabolicconference/imc-scholarship-application/) **Published:** April 2, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # 2025 IMC Scholarship Application The IMC Scholarship is available to help cover travel costs and is available to first-time conference attendees. To apply, please fill out the application below. --- ### [Mito Resources](https://www.mitoaction.org/day-to-day-with-mito/mito-resources/) **Published:** March 21, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Day-to-Day with Mito](https://www.mitoaction.org/day-to-day-with-mito/ "Day to Day with Mito") # Mito Resources No matter where you are on your journey with mitochondrial disease, MitoAction is committed to connecting you with the most comprehensive resources available as well as a network of support. ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-MitoSocials-Young-girl-and-her-mother-do-an-arts-and-crafts-project-1024x683.webp) No matter where you are on your journey with mitochondrial disease, MitoAction is committed to connecting you with the most comprehensive resources available as well as a network of support. We exist to help you on your journey and to ensure you that you are not alone. Whether you are newly diagnosed, still unsure of your diagnosis, caring for a child living with mito, or a caregiver, family member, or friend, we are here for you. Our comprehensive catalog of resources span from practical daily tips to information that may be helpful to a clinician seeing a mito patient for the first time. We aim to empower you to take control of your care and to be your own advocate while surrounding you with a like-minded community who are here to support you. ### MitoAction Resources - [Mito New Patient Kit](https://www.mitoaction.org/education/new-patient-kit/) - [Mito Support Calls](https://www.mitoaction.org/programs-support/support/weekly-support-calls/) - [Monthly Expert Series](https://www.mitoaction.org/education/monthly-expert-series/) - [Energy in Action Podcast Series](https://www.mitoaction.org/education/energy-in-action/) - [MyMito Mobile App](https://www.mitoaction.org/mitoaction_mobile/) - [MitoAction Events Calendar](https://www.mitoaction.org/join-the-cause/upcoming-events/) - [Disability Benefits & Planning Resources](https://www.mitoaction.org/wp-content/uploads/2021/07/WorthingtonHines-Resources.pdf) - [Newsletter Sign-Up](https://www.mitoaction.org/newsletters/newsletter-signup/) ### Self Care and Mental Health - [Caring for Yourself Before, During and After Your Next Doctor Visit](https://www.mitoaction.org/wp-content/uploads/2025/05/Caring-for-Yourself-Emotionally-Before-and-During-Your-Next-Doctor-Visit.pdf) - [“After The Shock: Getting You Back On the Road to Resilience When Crisis Hits You Head On”](https://www.amazon.com/After-Shock-Getting-Resilience-Crisis/dp/0692447571/ref=sr_1_1?s=books&ie=UTF8&qid=1435930086&sr=1-1&keywords=After+the+Shock+by+Becky+Sansbury) - [“Breath Taking”](https://www.jessicafeinstories.com/) - [Grief and Mito](https://www.mitoaction.org/resources/grief-and-mito/) - [Accessible Mindfulness, Meditation & Yoga Resources](https://www.mitoaction.org/wp-content/uploads/2021/07/AH-Accessible-Wellness-Infographic.pdf) - Dr. Nierenburg Expert Series - [“Physchiatric Disorders and Mitochondrial Disease”](https://www.mitoaction.org/resources/psychiatric-disorders-in-mitochondrial-disease/) - [“Mitochondria and Psychiatry”](https://www.mitoaction.org/resources/mitochondria-and-psychiatry/) ### Doctor Visit(s) Resources - [Find a Doctor](https://www.mitoaction.org/mitochondrial-disease/doctors/) - [Navigating Illness with Mito: Protocols, Planning for Emergencies, etc.](https://www.mitoaction.org/day-to-day-with-mito/changing-physicians/protocol/) - [How to Prepare for Your/Your Loved One’s Next Doctor’s Visit!](https://www.mitoaction.org/wp-content/uploads/2024/06/Preparing-for-Your-or-Your-Loved-Ones-Next-Doctor-Visit.pdf) ### Parent Resources - [Parenting a Child with a Rare Disease Tip Sheet & Resource Page](https://www.mitoaction.org/wp-content/uploads/2024/06/Parenting-a-Child-with-a-Rare-Disease-Tip-Sheet-and-Resource-Page-for-Mito.pdf) ### Accommodations in School - [Understanding Mito in the School World](https://www.mitoaction.org/education/energy-4-education/) (Energy 4 Education Video): - [Mito and the School System by Age](https://www.mitoaction.org/education/energy-4-education/school-education/) - [IEPs and 504s and so Much More](https://www.mitoaction.org/education/energy-4-education/sample-ieps-letters/) ### Clinical Trial Information - [Clinical Trials](https://www.mitoaction.org/clinicaltrials/#slide1) ### Working with Mito - [Working with Mito Disease](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-96-employed-with-mito-disease/ "Energy in Action Podcast Episode 96: Employed with Mito Disease") (Energy in Action Podcast) ### Child Resources - [Superhero Mask](https://www.mitoaction.org/wp-content/uploads/2020/07/Superhero-Mask.pdf) - [You Are a Superhero](https://www.mitoaction.org/wp-content/uploads/2021/07/YOU-are-a-SUPERHERO.pdf) - [Mito Man Coloring Page](https://www.mitoaction.org/wp-content/uploads/2021/07/MitoMan-Coloring-Page.pdf) ### Service Dog Resources - [Service Dog Provider List](https://www.vamicreations.com/maker-life/service-dog-for-maker-community) - [ICAN Service Dog Provider IN](https://www.icandog.org/) - [Can Do Canines](https://www.mitoaction.org/resources/candocanines021721/) --- ### [Men's Support Calls](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/mens-support-calls/) **Published:** March 14, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Support-Calls-Mens-Support-Calls-1024x1024.webp)MitoAction recognizes that men impacted by mitochondrial disease face a unique set of circumstances. Whether you navigate living with or caring for a loved one with mito, the support calls for men provide an opportunity to connect with others who can relate best. If you are a patient, parent, caregiver, friend, or loved one, feel free to join us for a monthly support call just for men in the mitochondrial disease community! [Register for our upcoming Men’s Support Calls](https://mitoaction-org.zoom.us/meeting/register/tZwkcO-hqzgtEtU8nUq0DF3yU1Kgn1gux6Bw) --- ### [Mitochondrial Transplantation: Community Perspectives Survey](https://www.mitoaction.org/mitochondrial-transplantation-community-perspectives-survey/) **Published:** March 26, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") *Please complete the survey no later than Friday, April 18, 2025.* --- ### [FAOD Support Calls](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/faod-support-calls/) **Published:** March 1, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/03/FAOD-evening-website-image.png)Join other families and patients affected by fatty acid oxidation disorders on the second Thursday of each month! Our FAOD support calls are a safe place to share stories, experiences, and give/receive support! Everyone is welcome! ### Evening FAOD Support Calls Evening FAOD Support Calls are held on the second Thursday of the month at 8:15 p.m. EST. [Register for FAOD Evening Support Calls](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ#/registration) --- ### [Mitochondrial Disease Symptoms](https://www.mitoaction.org/mitochondrial-disease/symptoms/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Mitochondrial Disease](https://www.mitoaction.org/mitochondrial-disease/ "Back to Mitochondrial Disease") # Mitochondrial Disease Symptoms Mitochondrial diseases are a varied group of disorders characterized by impaired energy production. The symptoms of mitochondrial disease can arise in any organ and at any age. ![](https://www.mitoaction.org/wp-content/uploads/2024/07/Young-boy-and-his-mother-meeting-with-a-doctor-1024x683.webp) Mitochondrial diseases are a varied group of disorders characterized by impaired energy production. The symptoms of mitochondrial disease can arise in any organ at any age. Some symptoms are hallmarks of mitochondrial disease and are called “red flag” symptoms. ### Neurologic - Cerebral stroke-like lesions in a nonvascular pattern (brain lesions that do not appear like a regular stroke on imaging) - Basal ganglia disease (physical dysfunction, such as would occur with Parkinson’s disease) - Encephalopathy (brain disease) recurrent or with low/ moderate dosing of valproate (a medicine used to treat epilepsy, bipolar disease, and migraines) - Neurodegeneration (the progressive loss of structure or function of neurons, including death of neurons) - Epilepsia partialis continua (recurrent epileptic seizures that affect specific areas and recur every few seconds or minutes for extended periods) - Myoclonus (jerky contraction of groups of muscles) - Ataxia (loss of control of body movements) - MRI findings consistent with Leigh disease (in basal ganglia or brain stem) - Characteristic magnetic resonance spectrometry (MRS) peaks\\ ### Cardiovascular - Hypertrophic cardiomyopathy with rhythm disturbance (thick heart muscle that can lead to irregular heartbeat) - Unexplained heart block in a child - Cardiomyopathy with lactic acidosis (build up of lactic acid in the body) - Dilated cardiomyopathy with muscle weakness - Wolff-Parkinson-White arrhythmia (a disorder of the heart’s electrical system that can cause fast heartbeat, palpitations, shortness of breath, and fainting) ### Ophthalmologic - Retinal (the back of the eye) degeneration with signs of night blindness, color-vision deficits, decreased visual acuity, or pigmentary retinopathy - Ophthalmoplegia paresis (weakness or paralysis of eye muscles) - Fluctuating, dysconjugate eye movements (eyes not moving together) - Ptosis (droopy upper eyelid) - Sudden or insidious-onset optic neuropathy/atrophy (damage to the optic nerve) ### Gastroenterological - Unexplained or valproate-induced liver failure - Severe dysmotility (digestive tract muscles are impaired; food does not move through the system) - Pseudo-obstructive episodes (problem with gut motility that mimics an obstruction) ### Other - A newborn, infant, or young child with unexplained hypotonia (low muscle tone), weakness, failure to thrive, and a metabolic acidosis (particularly lactic acidosis) - Exercise intolerance that is not in proportion to weakness - Hypersensitivity to general anesthesia - Episodes of acute rhabdomyolysis (death of muscle fibers, which are then released into the blood stream) ![](https://www.mitoaction.org/wp-content/uploads/2025/03/Symptoms-Graphic-1024x712.webp) --- ### [Day to Day with FAOD](https://www.mitoaction.org/fatty-acid-oxidation-disorders/day-to-day-with-faod/) **Published:** December 20, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # Day to Day with FAOD ##### Helpful tips, tricks, and other ideas to help make daily life easier for people with FAODs, and their families. MitoAction is committed to helping our community live their best life day-to-day despite the challenges of living with Fatty Acid Oxidation Disorders. We’ve created these resources to provide tips, tricks, and other ideas to help make daily life easier for people with FAODs, and their families. Hopefully, this will help make this journey a little less stressful for the entire family, and help you navigate the world of FAODs. With some preparation, equipment, and lifestyle changes, you too, can LIVE with FAOD! ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-MitoSocials-Young-girl-and-her-mother-do-an-arts-and-crafts-project-1200x600.webp)#### FAOD Resources A comprehensive list of resources to help patients, parents and caregivers on their FAOD journey. [Learn More](https://www.mitoaction.org/fatty-acid-oxidation-disorders/faod-resources/) ![](https://www.mitoaction.org/wp-content/uploads/2024/07/Young-boy-and-his-mother-meeting-with-a-doctor-1200x600.webp)#### FAOD Life Hacks FAOD Life Hacks are short videos with “words of advice” from real FAOD patients and family members. [Learn More](https://www.mitoaction.org/fatty-acid-oxidation-disorders/day-to-day-with-faod/faod-life-hacks/) --- ### [2025 IMC Post-Conference Survey](https://www.mitoaction.org/events/internationalmetabolicconference/imc-post-conference-survey/) **Published:** August 7, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # 2025 IMC Post-Conference Survey --- ### [2025 International Metabolic Conference Speaker Logistics and Travel Information](https://www.mitoaction.org/events/internationalmetabolicconference/imc-speaker-logistics-travel/) **Published:** January 19, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # 2025 International Metabolic Conference Speaker Logistics and Travel Information We are so excited for the 2025 International Metabolic Conference for Families and Individuals Impacted by Fatty Acid Oxidation Disorders. Please fill out the form below with all your travel information and speaker documents (bio, headshot, etc.). "\*" indicates required fields 1Traveler Information 2Speaker Logistics 3Waivers URL This field is for validation purposes and should be left unchanged. ### Name (as it appears on driver’s license) SalutationDr.MissMr.Mrs.Ms.Prof.Rev. First Name\* Middle Name Last Name\* Suffix ### Address (as it appears on driver’s license) Address Line 1\* Address Line 2 City\* State\*AlabamaAlaskaAmerican SamoaArizonaArkansasCaliforniaColoradoConnecticutDelawareDistrict of ColumbiaFloridaGeorgiaGuamHawaiiIdahoIllinoisIndianaIowaKansasKentuckyLouisianaMaineMarylandMassachusettsMichiganMinnesotaMississippiMissouriMontanaNebraskaNevadaNew HampshireNew JerseyNew MexicoNew YorkNorth CarolinaNorth DakotaNorthern Mariana IslandsOhioOklahomaOregonPennsylvaniaPuerto RicoRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUtahU.S. Virgin IslandsVermontVirginiaWashingtonWest VirginiaWisconsinWyomingArmed Forces AmericasArmed Forces EuropeArmed Forces Pacific ZIP\* ### Contact Information Email Address\* Cell Phone\* ### Other Details Date of Birth\* What is your preferred airport to fly out of?\* Please let us know if you have a preference on departure and arrival times; please note, we will do our best to accommodate any travel preferences as our budget allows.\* Which night(s) will you need hotel accommodations? We invite you to participate in any or all days of the conference as your schedule permits.\* Thursday – 7/24/25 Friday – 7/25/25 Saturday – 7/26/25 Sunday – 7/27/25 I don’t require any hotel accommodations Which days will you participate at the conference? We invite you to participate in any or all days of the conference as your schedule permits, as patients and their families enjoy interacting with the experts!\* Friday – 7/25/25 Saturday – 7/26/25 Sunday – 7/27/25 Please provide your TSA Precheck Number, if you have one. Please list any special travel accommodations you may require Do you have any dietary restrictions or allergies?\* Yes No What are your dietary restrictions or allergies?\* Will you be attending the Clinician Networking Dinner on Saturday night?\* Yes No Next Name/Title/Institution as you would like it to appear on printed conference materials Ex. Cheryl Bauer, MD, PhD, Clinical Medical Director of Genetic and Metabolic Clinics, Children’s Hospital Colorado Office Address\* Office Phone Number\* Please select from the following bio and headshot options\* Use bio/headshot from last year I will provide an updated bio/headshot below Please upload current bio if applicableAccepted file types: pdf, Max. file size: 5 MB. Please upload current headshot if applicableAccepted file types: jpg, gif, png, Max. file size: 5 MB. Title of Presentation/Roundtable Discussion (1)\* Description of Presentation/Roundtable Discussion (1) 2-3 sentences\* Title of Presentation/Roundtable Discussion (2) if applicable Description of Presentation/Roundtable Discussion (2) 2-3 sentences if applicable Title of Presentation/Roundtable Discussion (3) if applicable Description of Presentation/Roundtable Discussion (3) 2-3 sentences if applicable T-Shirt Size (Unisex Sizing) XS S M L XL 2XL 3XL Previous Next I hereby grant MitoAction the irrevocable right and permission to use photographs and/or videos (including any presentation videos) of me on the MitoAction website, videos, publications, social media, promotional flyers or for any other similar purpose and agree that all such photographs and/or videos taken at the event shall remain the property of MitoAction.\* I agree I do not agree (photographer/videographer will be notified as to attendees who select no) While participating in events held or sponsored by MitoAction Inc., participants are encouraged to practice CDC guidelines to reduce the risk of exposure to COVID-19. MitoAction cannot guarantee that its participants, volunteers, partners, or others in attendance will not become infected with COVID-19. By attending a MitoAction event, you certify that you do not fall into any of the following categories: 1. Individuals who currently or within the past fourteen (14) days have experienced any symptoms associated with COVID-19, which include fever, cough, and shortness of breath among others; 2. Individuals who have traveled at any point in the past fourteen (14) days either internationally or to a community in the U.S. that has experienced or is experiencing sustained community spread of COVID-19; or 3. Individuals who believe that they may have been exposed to a confirmed or suspected case of COVID-19 or have been diagnosed with COVID-19 and are not yet cleared as non-contagious by state or local public health authorities or the health care team responsible for their treatment. DUTY TO SELF-MONITOR: Participants and volunteers agree to self-monitor for signs and symptoms of COVID-19 (symptoms typically include fever, cough, and shortness of breath) and, contact MitoAction at info@mitoaction.org if he/she experiences symptoms of COVID-19 within 14 days after participating or volunteering with MitoAction. LIABILITY WAIVER AND RELEASE OF CLAIMS: I acknowledge that I derive personal satisfaction and a benefit by virtue of my participation and/or voluntarism with MitoAction, and I willingly engage in MitoAction events and/or other fundraising activities (the “Activity”). RELEASE AND WAIVER. I HEREBY RELEASE, WAIVE AND FOREVER DISCHARGE ANY AND ALL LIABILITY, CLAIMS, AND DEMANDS OF WHATEVER KIND OR NATURE AGAINST MITOACTION AND ITS AFFILIATED PARTNERS AND SPONSORS, INCLUDING IN EACH CASE, WITHOUT LIMITATION, THEIR DIRECTORS, OFFICERS, EMPLOYEES, VOLUNTEERS, AND AGENTS (THE “RELEASED PARTIES”), EITHER IN LAW OR IN EQUITY, TO THE FULLEST EXTENT PERMISSIBLE BY LAW, INCLUDING BUT NOT LIMITED TO DAMAGES OR LOSSES CAUSED BY THE NEGLIGENCE, FAULT OR CONDUCT OF ANY KIND ON THE PART OF THE RELEASED PARTIES, INCLUDING BUT NOT LIMITED TO DEATH, BODILY INJURY, ILLNESS, ECONOMIC LOSS OR OUT OF POCKET EXPENSES, OR LOSS OR DAMAGE TO PROPERTY, WHICH I, MY HEIRS, ASSIGNEES, NEXT OF KIN AND/OR LEGALLY APPOINTED OR DESIGNATED REPRESENTATIVES, MAY HAVE OR WHICH MAY HEREINAFTER ACCRUE ON MY BEHALF, WHICH ARISE OR MAY HEREAFTER ARISE FROM MY PARTICIPATION WITH THE ACTIVITY. ASSUMPTION OF THE RISK. I acknowledge and understand the following: 1. Participation includes possible exposure to and illness from infectious diseases including but not limited to COVID-19. While particular rules and personal discipline may reduce this risk, the risk of serious illness and death does exist; 2. I knowingly and freely assume all such risks related to illness and infectious diseases, such as COVID-19, even if arising from the negligence or fault of the Released Parties; and 3. I hereby knowingly assume the risk of injury, harm and loss associated with the Activity, including any injury, harm and loss caused by the negligence, fault or conduct of any kind on the part of the Released Parties.\* I agree Would you like to sign up for our mailing list?\*Mito NewslettersFAOD NewslettersBoth Mito & FAOD Newsletters Previous Submit --- ### [Thanks for Submitting Your Information for IMC](https://www.mitoaction.org/events/internationalmetabolicconference/imc-speaker-logistics-travel/thanks-for-submitting-your-information-for-imc/) **Published:** March 7, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # Thanks for Submitting Your Information for IMC Thank you for filling out our speaker form with all your travel information and speaker documents. If you had any issues with the form or questions, please contact Stephanie Harry at . --- ### [Traveling with Mito](https://www.mitoaction.org/day-to-day-with-mito/traveling-with-mito/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Day to Day with Mito](https://www.mitoaction.org/day-to-day-with-mito/ "Day to Day with Mito") # Traveling with Mito If you or someone you care for has mito and is traveling, we’ve provided a list of resources that should help. ![](https://www.mitoaction.org/wp-content/uploads/2025/03/Traveling-with-Mito-—-Passengers-in-an-Airplane-—-MitoAction-1024x683.webp) If you or someone you care for has mito and is traveling, we’ve provided a list of resources that should help. Whether it be by land, air or sea, we want to ensure that you have the best experience possible and can take advantage of available resources and support to assist you while you are on the road. ## Traveling by Air The Air Carrier Access Act (ACAA) protects passengers with disabilities from discrimination and requires airlines to provide certain accommodations for all flights to, from or within the United States. This assistance includes, but is not limited to: - Wheelchair assistance - Guided assistance to board the airplane, deplane, or to connect to another flight - Seating accommodations - Assistance with loading and storing assistive devices The US Department of Transportation provides several resources to assist in your travel planning: - [Wheelchairs and Other Assistive Devices](https://www.transportation.gov/individuals/aviation-consumer-protection/wheelchairs-and-other-assistive-devices) - [Assistance Moving Throughout the Airport](https://www.transportation.gov/individuals/aviation-consumer-protection/wheelchair-and-guided-assistance) - [Seating Accommodations](https://www.transportation.gov/individuals/aviation-consumer-protection/seating-accommodations) - [Service Animals (includes emotional support animals)](https://www.transportation.gov/individuals/aviation-consumer-protection/service-animals-including-emotional-support-animals) ## Traveling by Cruise > Taking a Cruise would be my dream vacation, but my children and I have Mito. Some families find cruises a nice alternative to vacations on land. In general, the ships themselves are accessible and there are wheelchairs on board if you want to borrow one. Most ships also have disabled rooms. Many shore excursions are easy for the disabled to do and there is plenty of time to rest onboard the ship. There is always a medical staff on board the ship if needed also. Be sure to call the cruise line ahead of time to find out their accessibility to travelers with disabilities. Also, be sure they know of your medical conditions and whether they will need any sort of treatment while on the ship. - If you need a refrigerator for medications, be sure the stateroom has that available. - If you require medical supplies to be shipped, make sure you have a contact person and an exact location of where they will need to be shipped to. - Ask that the supplies be shipped to arrive at the port the day of the cruise and be sure that your supplies are onboard the ship before it leaves the port. - Before the ship leaves the port, you may also want to count the medical supplies or go down the inventory list to be sure that everything is accounted for. There are many cruise companies that offer facilities for those with special needs, but the following are considered among the best*.* - [Royal Caribbean Cruise Line](https://www.royalcaribbean.com/experience/accessible-cruising) - [Carnival Cruise Line](https://www.carnival.com/about-carnival/special-needs.aspx) - [Norwegian Cruise Line](https://www.ncl.com/about/accessible-cruising) - [Princess Cruise Line](https://www.princess.com/news/backgrounders_and_fact_sheets/factsheet/Princess-Access-Makes-Cruise-Vacations-Accessible-For-Passengers-With-Disabilities.html) - [Disney Cruise Line](https://disneycruise.disney.go.com/faq/guests-with-disabilities/information/) - [Special Needs at Sea](https://www.specialneedsatsea.com) – Dedicated to fulfilling the special needs requirements for persons who want to travel but may need mobility aides, oxygen or other equipment. We make travel easy, comfortable and accessible. ## Transportation to Medical Appointments If you are going to a medical appointment in another state, these are some resources that may be helpful regarding air travel. Some offer significant discounts or free travel. **ANGEL FLIGHT** (978) 794-6868 [www.angelflightne.org](http://www.angelflightne.org/) **OPERATION LIFT OFF** Need 7 to 10 days notice (888) 354-5757 [www.operationliftoff.org/](https://www.operationliftoff.org/) **MIRACLE FLIGHT FOR KIDS** Need 15 days notice (800) 359-1711 [www.miracleflights.org/](http://www.miracleflights.org/) **NATIONAL PATIENT TRAVEL** (800) 296-1217 [www.patienttravel.org/](http://www.patienttravel.org/) **AMR AIR AMBULANCE** (800) 424-7060 **NATIONAL TICKET HELP** (800) 325-8908 Also, for lodging, [Ronald McDonald House](https://rmhc.org/) has houses in many cities that can be used for children up to ages 18-21. --- ### [Care Coordination & Management](https://www.mitoaction.org/day-to-day-with-mito/care-coordination-management/) **Published:** March 21, 2019 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Day to Day with Mito](https://www.mitoaction.org/day-to-day-with-mito/ "Day to Day with Mito") # Care Coordination & Management Care coordination in the U.S. is supposed to be done by the primary care physician, but by default, this usually becomes the responsibility of the patient or the parent or caregiver. ![Care coordination in the U.S. is supposed to be done by the primary care physician, but by default, this usually becomes the responsibility of the patient or the parent or caregiver.](https://www.mitoaction.org/wp-content/uploads/2022/12/Doctor-meeting-with-young-girl-and-mother-1024x682.jpg) Care coordination is an optimal way to help you manage your illness, but often very difficult to find. Care coordination in the U.S. is supposed to be done by the primary care physician (PCP), but by default, this usually becomes the responsibility of the patient or the parent/caregiver. Patients with mitochondrial disease usually have a PCP, often an internist or pediatrician. This person should be local, available, and optimally accepted by your insurance plan. He or she should know the local resources and be able to help you with emergency care. Your PCP should be willing to listen to you and work with you, and should learn with you over time how to manage your mitochondrial disease. This team member needs to be willing to communicate with and work with your mito specialist, as well as with your other sub-specialists. Some mito specialists will insist that you MUST have a PCP to keep you safe. Patients should also have a mito disease specialist. This person may not be local, but it helps if the office is as convenient as possible. The mito doc is usually a metabolic doctor, geneticist or neurologsit who is well versed in mito, and will be your expert resource in making a diagnosis and managing your illness. The mito doc will usually work with you to develop a treatment plan, which you and your other healthcare providers (HCPs) will follow. You may have more than one mito specialist; if you do, make certain they are working together. Also, a local mito specialist who is responsive and available to you and your PCP may be more effective than going to the “best” mito specialist in the country. Find out if your local mito specialist interacts with others around the country and is comfortable when you bring questions. A great resource to find a mito specialist is through the [Mitochondrial Care Network](https://www.mitoaction.org/diagnosis/mcn/), or the [physician’s list](https://www.mitoaction.org/diagnosis-care/doctor-list/). Mito commonly affects multiple organ systems, and every affected organ system equals a different sub-specialist. Patients may have a cardiologist, GI doctor, neurologist, pulmonologist and many more in addition to the PCP and the mito doc. Getting to all these appointments, and communicating the results and each separate treatment plan can be overwhelming and confusing. Care coordination is needed to keep all the details straight, make sure that the lines of communication are open and that everything that happens is in the patient’s best interest. ### How can you do all this, and still have a life? You may be able to obtain case management through your insurance company. The case manager can help you access care and services, and coordinate the insurance minutiae that can eat up so much of your time and energy. You may be able to access case management through state-run programs, such as the Medicaid Model Waiver program. Your PCP and/or your Mito doc may be able to help you with care coordination. It is very helpful to identify a “contact person” at each office (and the sub-specialists’ office as well). This person can be called for quick access to the doctor’s ear, and should be nurtured and warmly thanked and appreciated. This is another reason to make certain you have a good relationship with the nurse in your PCP’s office and the nurse or genetic counselor in the office of your mito specialist. They are very good at “triage” and helpful for care coordination. Your doctors may be amenable to the use of an email list specifically for you or your child. This can be an excellent way to ensure that all interested parties are aware of changes to a patient’s treatment plan or status, but is no substitute for direct contact in case of emergency. To set an email list up, ask each of your doctors (including all the sub-specialists) if they would be willing to be a member of the list, stressing that receiving the email would not constitute responsibility for provision of emergency care (unless the doctor wants to and contacts you back). Ask the doctor which email address to use. You may also add other HCPs, nursing agencies, teachers, etc. if appropriate. Use this list for matters of notification, such as lab results, med changes or status changes. If a doctor wants to reply and hits “reply all,” their comments will be made known to the whole group. No HCP is obligated to reply unless they want to and have something to add. You are responsible for contacting the doctors directly if you have more urgent questions and need answers soon, or if you need to notify a doctor who is not on the list. There is a paper trail for all of this, which can go in the chart. ## Care Coordination Resources #### Primary Care Physician Involvement & Interaction Learn more about what a primary care physician is and the roles they play as part your care management team. [Learn More](https://www.mitoaction.org/day-to-day-with-mito/care-coordination-management/primary-care-physician-involvement-and-interaction/) #### Mito Navigator Toolkit We created the Mito Navigator Toolkit to help patients, families and caregivers navigate the medical system and be better prepared for any issues that may arise. [Learn More](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/mito-navigator-toolkit/) #### Mito Sick Protocol Plan in advance for what to do when you or your family member is sick or taking longer to recover from mitochondrial disease issues and symptoms. [Learn More](https://www.mitoaction.org/day-to-day-with-mito/care-coordination-management/protocol/) #### How to Prepare for Your Next Doctor’s Visit A helpful checklist to help you prepare for your next doctor visit and get the most out of it. [Learn More](https://www.mitoaction.org/day-to-day-with-mito/care-coordination-management/prep-for-doctors-visit/) #### Caring for Yourself Before, During and After Your Next Doctor Visit A helpful checklist to help you mentally and emotionally prepare for your next doctor visit, and process it afterwards. [Learn More](https://www.mitoaction.org/day-to-day-with-mito/care-coordination-management/caring-for-yourself-doctors-visit/) #### Planning for Emergencies Medical emergencies are tough to avoid, but preparedness is empowering and provides a path for faster and effective care. [Learn More](https://www.mitoaction.org/day-to-day-with-mito/care-coordination-management/planning-for-emergencies/) #### Communicating Effectively with Medical Professionals If you are a parent of a child with a chronic illness, you may find yourself in the position of advocating for that child. Speaking for the child requires great care and consideration. [Learn More](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/mito-navigator-communication/communicating-with-medical-professionals-in-the-hospital/) #### Relationships with Medical Professionals in the Hospital Parents can sometimes develop natural friendships with medical staff they see on a regular basis, but it is imperative to remember to maintain good boundaries with medical professionals and staff. [Learn More](https://www.mitoaction.org/day-to-day-with-mito/care-coordination-management/relationships-with-medical-professionals-in-the-hospital/) #### Transitioning Your Care Team Patients must sometimes transition care from one physician to another. We’ve created resources to help mito disease patients locate new physicians for their care. [Learn More](https://www.mitoaction.org/day-to-day-with-mito/care-coordination-management/transitioning-your-care-team/) Another great resource is the [MyMito App](https://www.mitoaction.org/mymito/ "MyMito App") platform. The tool allows you to manage all aspects of your care and include each member of your care team through the HIPAA compliant platform. This is a great way to streamline communication and give everyone on your team access to the same information. --- ### [Parents and Caregivers of Children with Mito](https://www.mitoaction.org/day-to-day-with-mito/parents-and-caregivers/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Day to Day with Mito](https://www.mitoaction.org/day-to-day-with-mito/ "Day to Day with Mito") # Parents and Caregivers of Children with Mito Some helpful tips for the parents and caregivers of a child with mitochondrial disease. ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-MitoSocials-Young-girl-and-her-mother-do-an-arts-and-crafts-project-1024x683.webp) > It’s my fault – I passed this on to them. It’s hard to have dreams or goals for the future because of the uncertainty. Raising a family while suffering from any chronic illness can present special challenges to parents. This is particularly true when one suffers from mitochondrial disease as this disease presents with so many various issues. Fatigue, skeletal muscle weakness, and pain present some of the biggest obstacles to overcome. One of the most important principles to remember is that mitochondrial disease is part of your life; it is not your life. Children need to know that mito is not in charge; you are. It will help them to feel more secure through the ups and downs of the condition. One of the biggest challenges for a parent or caregiver is to seek help. Asking for and accepting help is a complex issue. Obviously you first need to admit that having some help will make a real difference in your loved one’s quality of life, and therefore yours as well. Then you need to define what help you need. Which tasks or chores would be the easiest to ask others to do? Which do you really want to do yourself? And which, if any, can you afford to pay others to do? If this just sounds like more work, know that it doesn’t have to be an overwhelming task but rather just a way to organize the thoughts and information you already have. Ready to give it a try? ### Here are Six Steps to Getting Help: 1. Recognize that caregiving, like any job, is made up of lots of individual tasks, not all of which are of the same importance. Some tasks take a few minutes; some may take many hours. Some tasks are easy; others require some skill and fortitude. The challenge is to know the difference. 2. Recognize that asking for help is a sign of strength and not of weakness. It means you truly have a grasp on your situation and have come up with a proactive problem-solving approach to making things easier and better. 3. Create a list of the tasks that need to get done in any given week, or at least those you are most concerned about, such as balancing your responsibilities at work with taking mom to the doctor and Susie to soccer practice, bathing and dressing your husband, cooking, cleaning, etc. When you see how long the list is you’ll quickly understand why you are so tired and don’t have time for yourself. 4. Group your tasks into categories such as personal care tasks for your loved one, transportation, household chores. You can group your tasks into only a few broad categories, or many specific ones. There’s no right or wrong way. It’s all a matter of personal preference. 5. Write down your caregiving worries. Where will we get the money to pay for John’s medications? Who will care for Mary if I get sick? Where can I find a daycare facility that provides transportation? Seeing them in black-and-white helps diffuse some of their emotion. It also allows you to think more rationally about your concerns and understand how getting help with some of your tasks might lessen the stress. It can provide the basis for deciding which tasks you might ask a neighbor, family member or the church to help out with, which you are willing and able to pay someone else to do, and which there might be a public program for. 6. Share your lists with someone you trust before you actually reach out for help–a friend, therapist or clergyman, perhaps. The intent is to first get comfortable with idea of talking about your need for assistance and hopefully get some encouragement and good ideas in the process. Then take a deep breath and actually ask someone to help with one of the tasks on your list, or ask for guidance in resolving your most persistent worry. Start with something small, especially if you are looking for hands-on assistance or something that requires someone doing you a favor. Don’t get discouraged if you get rejected at first. It sometimes takes perseverance. Just remember–the effort is worth it because the goal is better care for your loved one and yourself. ### Visit these additional resources that focus on supporting Caregivers: - [Caregiver Action Network](http://www.thefamilycaregiver.org/) - [Family Caregiver Alliance](https://www.caregiver.org) - [211 Nationwide Health and Human Service Information and Referral Program](http://www.211.org/) - [Next Steps in Care](https://www.nextstepincare.org) --- ### [Mito Life Hacks](https://www.mitoaction.org/day-to-day-with-mito/mito-life-hacks/) **Published:** September 18, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Day to Day with Mito](https://www.mitoaction.org/day-to-day-with-mito/ "Day to Day with Mito") # Mito Life Hacks Members of our community share their tips for making life with mito just a little bit easier. ![](https://www.mitoaction.org/wp-content/uploads/2023/01/Vehicle-Modification-Van-with-Chair-Lift-1024x683.jpg) Mito Life Hacks are short videos with “words of advice” from real mito patients and family members. These are things users in our community have learned from person experience on their own journey with mito. They share these “tricks of the trade” to help other mitochondrial disease patients and family members make life with mito just a little bit easier. https://youtu.be/ffjpP9nzO60?si=nYKVUfCy9IM_6rT_ Using Facebook by Bill Ness https://youtu.be/ahmbMQBlgH8?si=GFXvpjBM86FmmnvE Work Tip by Rachel Wilson https://youtu.be/_o1HVGxMSas?si=d-kPBuxNWFkc9me- Self Esteem and Self Acceptance by Rachel Wilson https://youtu.be/3N3YUHCp7g4?si=1GfthZox7BQ5D0z3 Travel tips by Stephanie Harry https://youtu.be/hbsTTCn9ZEE?si=-2k4PAkp624qS1tj Hospital Hack by Alex Salser https://youtu.be/GPpA4Z7Kv_Y?si=m_-GeKXk2R8bTY-g Feel the Feelings and Mobility Aids by Adam Johnson https://youtu.be/3m_8EpqiimA?si=uwa8dZTiIjtKt7wM How to Research your Doctor by Bill Ness https://youtu.be/3tJ3cCMzG0I?si=TOpdxU_C2LAAc6bS Exercise Tips by Ali Hamadeh https://youtu.be/hReLqXuBJS8?si=h9ayJ01cjyF0mrZ5 Tips and Tricks in the Kitchen by Marcy Young https://youtu.be/-ipPW7fY7h8?si=Hbb_MpYDWapSCAWU Mito and Transportation Tricks by Bill Ness https://youtu.be/yrbhfh7Zong?si=nJM3F3osF96zZZBN Sick Day and Rest Area Hack by April Arguin https://youtube.com/shorts/m7Jd0zIfDLM?si=wB_xkkzwFyxOeUfX Dealing with Neuropathy Pain by Rachel Wilson --- ### [Day to Day with Mito](https://www.mitoaction.org/day-to-day-with-mito/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # Day to Day with Mito ##### Helpful tips, tricks, and other ideas to help make daily life easier for people with mitochondrial diseases, and their families. MitoAction is committed to helping our community live their best life day-to-day despite the challenges of mitochondrial disease. We’ve created these resources to provide tips, tricks, and other ideas to help make daily life easier for people with mitochondrial diseases, and their families. Hopefully, this will help make this journey a little less stressful for the entire family, and help you navigate the world of mitochondrial disease. With some preparation, equipment, and lifestyle changes, you too, can LIVE with mito! ![](https://www.mitoaction.org/wp-content/uploads/2024/10/Woman-Using-Cellphone-to-Manage-Mito-–-MyMito-App-–-MitoAction-1200x600.webp)#### Mito Resources A comprehensive list of resources to help patients, parents and caregivers on their Mito journey. [Learn More](https://www.mitoaction.org/day-to-day-with-mito/mito-resources/) ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-MitoSocials-Little-boy-playing-on-playground-equipment-1200x600.webp)#### Managing Your Energy Helpful tips for managing your energy and dealing with the fatigue caused by Mito. [Learn More](https://www.mitoaction.org/day-to-day-with-mito/managing-your-energy/) ![](https://www.mitoaction.org/wp-content/uploads/2025/03/Exercise-with-Mito-—-Physical-Therapy-Working-with-a-Patient-—-MitoAction-1200x600.webp)#### Exercise with Mito Fatigue and other symptoms can make exercise difficult. Kimberly Serra addresses your Frequently Asked Questions. [Learn More](https://www.mitoaction.org/day-to-day-with-mito/exercise-with-mito/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Doctor-meeting-with-young-girl-and-mother-1200x600.jpg)#### Care Coordination and Management Resources to help patients, parents and caregivers better coordinate and manage patient care. [Learn More](https://www.mitoaction.org/day-to-day-with-mito/care-coordination-management/) ![Young girl sitting at her desk in elementary school. Elementary school presents unique challenges for kids with mitochondrial diseases and their parents.](https://www.mitoaction.org/wp-content/uploads/2024/10/Young-Girl-Sitting-at-Desk-in-Elementary-School-—-MitoAction-—-Energy-4-Education-1200x600.webp)#### Advocating for Yourself and Your Child Here are some steps to take so you can advocate for yourself and your child effectively. [Learn More](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/adults-with-mito/advocating-for-yourself/) ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-MitoSocials-Young-girl-and-her-mother-do-an-arts-and-crafts-project-1200x600.webp)#### Parents and Caregivers of Children with Mito Some helpful tips for the parents and caregivers of a child with mitochondrial disease. [Learn More](https://www.mitoaction.org/day-to-day-with-mito/parents-and-caregivers/) ![](https://www.mitoaction.org/wp-content/uploads/2023/01/Traveling-with-Mito-1200x600.jpg)#### Traveling with Mito If you or someone you care for has mito and is traveling, we’ve provided a list of resources that should help. [Learn More](https://www.mitoaction.org/day-to-day-with-mito/traveling-with-mito/) ![](https://www.mitoaction.org/wp-content/uploads/2025/03/Holiday-Tips-—-Family-Enjoying-a-Holiday-Dinner-—-MitoAction-1200x600.webp)#### Holiday Tips Our tips to help reduce stress and fatigue while making the most out of every moment! [Learn More](https://www.mitoaction.org/day-to-day-with-mito/holiday-tips/) ![](https://www.mitoaction.org/wp-content/uploads/2023/01/Vehicle-Modification-Van-with-Chair-Lift-1200x600.jpg)#### Mito Life Hacks Mito Life Hacks are short videos with “words of advice” from real Mito patients and family members. [Learn More](https://www.mitoaction.org/day-to-day-with-mito/mito-life-hacks/) ![](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-Team-Matthew-01-1200x600.jpg)#### Living with Mito We’ve broken down our tips for living with Mito, with relevant information young children, teens and adults. [Learn More](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/) --- ### [Holiday Tips](https://www.mitoaction.org/day-to-day-with-mito/holiday-tips/) **Published:** February 7, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") We all enjoy the holiday season in our own special ways. The holidays present a dizzying array of demands — parties, shopping, baking, cleaning and entertaining. These all can cause stress! It is important to be gracious with yourself and budget for the extra energy demands during the holiday season, especially when you have mitochondrial disorders. Although there may be times of stress, low energy, or outright fatigue, there are countless ways to be creative, reduce stress, and make the most out of every moment! ### Tips to prevent holiday stress When stress is at its peak, it’s hard to stop and regroup. Be proactive (especially if the holidays have taken an emotional toll on you in the past): 1. **Seek professional help if you need it.** Despite your best efforts, you may find yourself feeling persistently sad or anxious, fatigued, in physical pain, unable to sleep, irritable, and unable to face routine chores. If these feelings last, talk to your primary care doctor or mental health professional. 2. **Be realistic.** The holidays don’t have to be perfect, nor will they be just like last year. Try and let yourself feel whatever emotions arise, but remember as families change and grow, traditions and rituals often change as well. People with and without Mito will experience this. It is part of being human. Work with your family to choose a few traditions to hold on to, and be open to creating new ones. 3. **Energy. Listen to your body!** Take frequent breaks, ask friends for help, and keep an eye on your regulation of temperature. Be sure to hydrate and eat healthy snacks to help extend your energy reserves. 4. **Stick to a budget.** Before you go gift and food shopping, decide how much money you can afford to spend. Try to stick to your budget. 5. **Plan ahead.** Set aside specific days for shopping, baking, visiting friends and other activities, with designated rest days or breaks. Plan your menus, so you don’t have to make extra trips to the store. If you are hosting a gathering, ask family or friends to come early or stay late so they can help with prep or clean-up. This will give you more time together and help reduce fatigue after an event. 6. **Learn to say no.** Saying yes when you know it is too much for you to take on, can leave you feeling resentful and overwhelmed. Friends and colleagues will understand if you can’t participate in every project or activity. If it’s not possible to say no when your boss asks you to work overtime, try to remove something else from your agenda to make up for the lost time. 7. **Stick to your regular healthy habits.** Simple things like getting plenty of sleep, incorporating regular physical activity, and maintaining your fluid intake can have such a positive impact on your body! Also, eating a healthy snack before holiday parties can help you prevent going overboard on sweets or drinks. 8. **Take a breather.** Make some time for yourself. Spending just 15 minutes alone, without distractions, may refresh you enough to handle everything you need to do. Clearing your mind, slowing your breathing and restoring inner calm can reduce your stress. ### Try these suggestions - Take a walk at night to look at holiday lights. - Listen to soothing music. - Get a massage. - Reading a book with a cup of tea. - Lay down, close your eyes, and think about 3 things you appreciate. --- ### [Mitochondrial Disease](https://www.mitoaction.org/mitochondrial-disease/) **Published:** November 29, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # Mitochondrial Disease ##### Mitochondrial diseases can affect the cells of the brain, nerves, muscles, kidneys, heart, liver, eyes, ears, or pancreas. Mitochondrial disease is an inherited chronic illness that can be present at birth or develop later in life. It causes debilitating physical, developmental, and cognitive disabilities with symptoms including poor growth; loss of muscle coordination; muscle weakness and pain; seizures; vision and/or hearing loss; gastrointestinal issues; learning disabilities; and organ failure. It is estimated that 1 in 4,000 people has Mito. It’s progressive and there is no cure. Mitochondrial disease can be invisible. Whether you have a diagnosis or are still on the diagnostic journey, MitoAction is here to support you. ![Scientific investigation of mitochondrial disease in the laboratory setting](https://www.mitoaction.org/wp-content/uploads/2023/01/DNA-Scientiest-working-in-Laboratory-with-Vials-1024x683.jpg)In 1962, the first patient was diagnosed with a mitochondrial disorder. In 1963, researchers discovered that mitochondria have their own DNA or “blueprint” (mtDNA), which is different than the nuclear DNA (nDNA) found in the cells’ nucleus. The types of mitochondrial diseases are categorized according to the organ systems affected and symptoms present. Mitochondrial diseases might affect the cells of the brain, nerves (including the nerves to the stomach and intestines), muscles, kidneys, heart, liver, eyes, ears, or pancreas. In some patients, only one organ is affected, while in other patients all the organs are involved. Depending on how severe the mitochondrial disorder is, the illness can range in severity from mild to fatal. Depending on which cells of the body are affected, symptoms might include: - Poor growth - Loss of muscle coordination, muscle weakness - Visual and/or hearing problems - Developmental delays, learning disabilities - Mental retardation - Heart, liver, or kidney disease - Gastrointestinal disorders, severe constipation - Respiratory disorders - Diabetes - Increased risk of infection - Neurological problems, seizures - Thyroid dysfunction - Dementia (mental disorder characterized by confusion, disorientation, and memory loss) For many patients, mitochondrial disease is an inherited condition that runs in families (genetic). An uncertain percentage of patients acquire symptoms due to other factors, including mitochondrial toxins. It is important to determine which type of mitochondrial disease inheritance is present, in order to predict the risk of recurrence for future children. ### **Find nearby doctors who specialize in Mitochondrial diseases** Our searchable directory makes it easy to find a doctor or facility specializing in diagnosing and treating mitochondrial disorders. [Find a Mito Doc](https://www.mitoaction.org/mitochondrial-disease/doctors/) ### What is the prognosis or outlook? Once a patient is diagnosed with a specific mitochondrial disease, the patient’s medical problems have already been identified or can be identified with proper testing so treatment can be initiated to relieve symptoms and delay the progression of the disease. The prognosis is variable. Some people live a normal life and are minimally affected; others can be severely compromised with the disease. The progression of mitochondrial disease is unpredictable and different for each person. They might progress quickly or slowly, even over decades. The disease might also appear stable for years. For parents considering having other children, genetic counseling is available. Although complex, prenatal testing is only available for a few types of mitochondrial disorders. Please discuss your concerns with your doctor. ![Patient sharing medical information and mitochondrial disease details with a genetic counselor](https://www.mitoaction.org/wp-content/uploads/2022/12/Genetic-counsellor-asking-patient-about-medical-history-1024x683.jpg) ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Mito411-Woman-on-the-phone-in-her-living-room-1024x683.webp)## [I Think I Have Mito. Now What?](https://www.mitoaction.org/mitochondrial-disease/i-think-i-have-mito-now-what/ "I Think I Have Mito. Now What?") Start your journey here, with links to our education resources about mitochondrial disease, diagnosis information, a directory of doctors who specialize in mitochondrial diseases and research, current clinical trial information, support, and more. [Learn More](https://www.mitoaction.org/mitochondrial-disease/i-think-i-have-mito-now-what/) ![](https://www.mitoaction.org/wp-content/uploads/2024/07/Young-boy-and-his-mother-meeting-with-a-doctor-1024x683.webp)## [Mito Symptoms](https://www.mitoaction.org/mitochondrial-disease/symptoms/ "Mitochondrial Disease Symptoms") Mito diseases are a varied group of disorders characterized by impaired energy production. Different types of mito can have different symptoms, but most mito diseases have hallmark — or “red flag” — symptoms. [Learn More](https://www.mitoaction.org/mitochondrial-disease/symptoms/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Doctor-filling-out-questionaire-1024x683.jpg)## [Diagnosis & Care](https://www.mitoaction.org/mitochondrial-disease/diagnosis/ "Mitochondrial Disease Diagnosis & Care") Mitochondrial disease is now known to occur at any age, although the adult disease may be more difficult to diagnosis because it can be more varied, subtle, and have a narrower spectrum of laboratory findings compared to mitochondrial disease that begins in childhood. [Learn More](https://www.mitoaction.org/mitochondrial-disease/diagnosis/) ![](https://www.mitoaction.org/wp-content/uploads/2025/03/Compounding-Pharmacist-Making-Capsules-—-MitoAction-1024x683.webp)## [Treatment](https://www.mitoaction.org/mitochondrial-disease/treatment/ "Mitochondrial Disease Treatment") Treatments for Mito are typically individualized for each patient, symptoms, and type of mitochondrial disease. [Learn More](https://www.mitoaction.org/mitochondrial-disease/treatment/) ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Wondering-Wednesdays-Ask-a-Genetic-Counselor-Woman-saying-hi-in-Zoom-session-1024x683.webp)## [Frequently Asked Questions](https://www.mitoaction.org/mitochondrial-disease/faq/ "Mitochondrial Disease FAQ’s") We’re sure you have lots of questions regarding mito. Check out our FAQs for answers to the most frequently asked questions. [Learn More](https://www.mitoaction.org/mitochondrial-disease/faq/) ![](https://www.mitoaction.org/wp-content/uploads/2024/07/Man-with-mitochondrial-disease-using-mobility-devices-1024x683.webp)## [Types of Mito](https://www.mitoaction.org/mitochondrial-disease/types-of-mitochondrial-diseases/ "Types of Mitochondrial Diseases") There are many types of mitochondrial diseases and it is estimated that 1 in 4,000 people have Mito. Learn more about the different types of mito diseases. [Learn More](https://www.mitoaction.org/mitochondrial-disease/types-of-mitochondrial-diseases/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Doctor-meeting-with-young-girl-and-mother-1024x682.jpg)## [Find a Mito Doctor](https://www.mitoaction.org/mitochondrial-disease/doctors/ "Mitochondrial Disease Doctors") MitoAction maintains a list of doctors nationwide who specialize in the diagnosis and treatment of mitochondrial disorders. Search our database to find a doctor near you. [Learn More](https://www.mitoaction.org/mitochondrial-disease/doctors/) --- ### [Honor and Memorial Giving](https://www.mitoaction.org/join-the-cause/giving/honor-memorial/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Giving](https://www.mitoaction.org/join-the-cause/giving/ "Giving") # Honor and Memorial Giving Honor or memorial gifts are a wonderful way to celebrate someone living with mitochondrial disease or to commemorate a loved one lost to this disease. [Make a Donation](https://p2p.onecause.com/supportmitoaction) ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-MitoAction-Memories-Memorial-candle-1024x683.webp) Honor or memorial gifts are a wonderful way to celebrate someone living with mitochondrial disease or to commemorate a loved one lost to this disease. When you [make a donation](https://p2p.onecause.com/supportmitoaction) in honor of someone special, simply provide us with their contact information and MitoAction will send a card to share a gift was made in their name. If you are making a gift in memory, MitoAction will also notify the family that a gift was made in their loved one’s name. And, we encourage you to share a photo and story of that special someone. MitoAction will share your tribute on our [MitoAction Memories page](https://www.mitoaction.org/programs-support/patient-and-family-support/memories/ "MitoAction Memories"), and send a candle to the family. --- ### [Matching Gifts](https://www.mitoaction.org/join-the-cause/giving/matching-gifts/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Giving](https://www.mitoaction.org/join-the-cause/giving/ "Giving") # Matching Gifts Does your employer match gifts their employees make to non-profit organizations? Many do. ![](https://www.mitoaction.org/wp-content/uploads/2024/11/Hands-Holding-Donation-Jar-—-MitoAction-—-Giving-Tuesday-1024x683.webp) Many companies offer matching gift programs to recognize their employees who support charitable organizations. Type your company name to see if they will [match your donation](https://doublethedonation.com/mitoaction). If you volunteer with us, your employer may also provide us with a grant as a way to recognize your ongoing support and time commitment to MitoAction. MitoAction is recognized by [Benevity](https://causes.benevity.org/causes/840-550899427) for donation matching. --- ### [Giving Tuesday](https://www.mitoaction.org/join-the-cause/giving/giving-tuesday/) **Published:** November 24, 2020 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Giving](https://www.mitoaction.org/join-the-cause/giving/ "Giving") # Giving Tuesday Hope in Action with MitoAction **Join the Journey** [Donate](https://give.mitoaction.org/campaign/631981/donate) ![](https://www.mitoaction.org/wp-content/uploads/2024/08/MitoAction-—-Marcels-Way-—-Hands-holding-donation-jar-966x1024.webp) ## Give the Gift of **HOPE** **Join the Journey this holiday season—give the gift of hope to a mito kid in need. Together, let’s create moments that last a lifetime and add joy to someone’s journey with mito. [Make a donation to help mito families in need.](https://give.mitoaction.org/campaign/631981/donate)** This Giving Tuesday, your gift has the power to bring joy and hope to children facing the challenges of mitochondrial disease. With your support, we can make a real, lasting difference in their journeys, uplifting families and inspiring hope when it’s needed most. By donating, you’ll fuel MitoAction’s most impactful programs. Programs like [Dalia’s Wish](https://www.mitoaction.org/programs-support/mitoaction-programs/dalias-wish/ "Dalia’s Wish"), which grants Disney wish trips to children with mito, and the [Matthew Harty Camper Fund](https://www.mitoaction.org/programs-support/mitoaction-programs/mhcf/ "Matthew Harty Camper Fund"), which creates cherished memories through unforgettable summer camp experiences. These moments of joy bring light into the lives of children and families in the mito community, helping them feel supported and understood. ![](https://www.mitoaction.org/wp-content/uploads/2024/11/Giving-Tuesday-Logo-—-MitoAction.webp) ### **Hope in Action with MitoAction** **Join the Journey this holiday season—give the gift of hope to a mito kid in need. Together, let’s create moments that last a lifetime and add joy to someone’s journey with mito.** [Make a Donation](https://give.mitoaction.org/campaign/631981/donate) --- ### [Giving](https://www.mitoaction.org/join-the-cause/giving/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # Giving ##### There are many ways that you can show your support of MitoAction and the families we serve. There are many ways that you can show your support of MitoAction and the families we serve. Whether it’s a donation to one of our many programs, a [matching gift through your employer](https://www.mitoaction.org/join-the-cause/giving/matching-gifts/) or [shopping at one of our retail partners](https://www.mitoaction.org/join-the-cause/giving/shop-for-mitoaction-2/), you can make a direct impact and support our mission to improve the lives of families affected by mitochondrial disease. **We THANK YOU for walking hand-in-hand with us and believing in the work that we do for the mitochondrial disease community.** ![](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-Team-Matthew-01-1200x600.jpg)#### Donate to MitoAction Make a tax-deductible donation to support children, adults and families affected by mitochondrial disease! [Learn More](https://www.mitoaction.org/join-the-cause/giving/donate/) ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-MitoAction-Memories-Memorial-candle-1200x600.webp)#### Honor & Memorial Giving Celebrate someone living with mitochondrial disease or commemorate a loved one lost to the disease. [Learn More](https://www.mitoaction.org/join-the-cause/giving/honor-memorial/) ![](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-12-1200x600.jpg)#### Matching Gifts Many companies offer matching gift programs to recognize their employees who support charitable organizations. [Learn More](https://www.mitoaction.org/join-the-cause/giving/matching-gifts/) ![](https://www.mitoaction.org/wp-content/uploads/2023/02/Another-Helping-Featured-Image-1200x600.jpg)#### Another Helping Help raise awareness and money for Dalia’s Wish, one cupcake at a time! [Learn More](https://www.mitoaction.org/join-the-cause/giving/anotherhelping/) ![](https://www.mitoaction.org/wp-content/uploads/2024/11/Hands-Holding-Donation-Jar-—-MitoAction-—-Giving-Tuesday-1200x600.webp)#### Giving Tuesday Giving Tuesday—the Tuesday after Thanksgiving—is a time to offer thanks and support non-profits in your community. [Learn More](https://www.mitoaction.org/join-the-cause/giving/giving-tuesday/) ![](https://www.mitoaction.org/wp-content/uploads/2025/03/Shop-for-MitoAction-—-MitoAction-1200x600.webp)#### Shop for MitoAction Use these special URLs to shop like you normally do, while a portion of your purchases goes to MitoAction. [Learn More](https://www.mitoaction.org/join-the-cause/giving/shop-for-mitoaction-2/) --- ### [Matthew Harty Camper Fund](https://www.mitoaction.org/programs-support/mitoaction-programs/mhcf/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Events](https://www.mitoaction.org/events/ "Back to Events") # Matthew Harty Camper Fund The Matthew Harty Camper Fund helps kids with mito just be kids by sending them to summer camps. ![The Matthew Harty Camper Fund helps kids with mito just be kids by sending them to summer camps.](https://www.mitoaction.org/wp-content/uploads/2024/10/Matthew-Harty-683x1024.webp) The Matthew Harty Camper Fund helps kids with mito just be kids by sending them to summer camps. In 2015, MitoAction expanded the Matthew Harty Camper Fund to offer scholarships to college-aged students with mitochondrial disease. The fund is supported by donations and MitoAction fundraisers held throughout the year, including the [Matthew Harty Golf Tournament](https://www.mitoaction.org/events/matthew-harty-golf-tournament/ "Matthew Harty Golf Tournament") and the [Matthew Harty Mito Classic](https://www.mitoaction.org/events/matthew-harty-mito-classic/ "Matthew Harty Mito Classic"). [Camp Opportunities](https://www.mitoaction.org/programs-support/mitoaction-programs/mhcf/camp-opportunities/) [Scholarship Opportunities](https://www.mitoaction.org/programs-support/mitoaction-programs/mhcf/scholarship/) ![](https://www.mitoaction.org/wp-content/uploads/2019/05/mharty-logo-print-1024x886.jpg) ## About Matthew and The Matthew Harty Camper Fund 2014 was the year Matthew Harty’s parents, Paul and Sarah, were going to send him to Camp Korey. “We wanted to send Matthew to camp because we wanted him to feel the experience of just being a kid at camp, like everybody else,” Paul said. But, Matthew never got the chance. Just days before his 8th birthday, Matthew died of mitochondrial disease. MitoAction renamed its “Send A Kid to Camp” program, “The Matthew Harty Camper Fund” in honor of this amazing little boy. “We have a newfound mission in our family and that’s to send as many kids with mitochondrial disease as possible to camp because we never know when they’re going to get that chance, “said Paul, also a member of the MitoAction Board of Directors. Managing mitochondrial disease is difficult for not only the child but for the entire family as well. The opportunity for a child to go to summer camp and forget about all of the issues they face day-to-day is a gift MitoAction is honored to provide not only to the child but to the family and parents as well. To date, MitoAction has sent over 365 kids to camp! In 2015, MitoAction expanded the Matthew Harty Camper Fund to offer scholarships to college aged students with mitochondrial disease. The Matthew Harty Scholarship will be awarded to high school seniors or currently enrolled college students with a diagnosis of mitochondrial disease. Applicants must complete a written application along with an essay. The essay should include how the scholars shine will be used to further support their educational studies or how it may be used to lessen the burden of managing their affliction to achieve their educational goals. The Matthew Harty Scholarship is also awarded each year to two North Andover High School students, the community that Matthew grew up in, to honor their commitment to community and service to others. [Make a Gift to the Matthew Harty Camper Fund](https://p2p.onecause.com/mhcf) ![Matthew & Paul Harty](https://www.mitoaction.org/wp-content/uploads/2019/07/Matthew-Paul-e1563538228218.jpg)![](https://www.mitoaction.org/wp-content/uploads/2019/07/Matthew-ride.jpeg)![](https://www.mitoaction.org/wp-content/uploads/2019/07/paul-_-Matthew.jpg)![](https://www.mitoaction.org/wp-content/uploads/2020/01/Matthew-at-Disney.jpg)![Matthew Harty on Porch](https://www.mitoaction.org/wp-content/uploads/2019/07/Matthew-on-Porch.jpg) --- ### [Volunteer](https://www.mitoaction.org/join-the-cause/volunteer/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # Volunteer with MitoAction ##### MitoAction volunteers support our mission and are the key to the success of our organization! Thank you for your interest in volunteering with MitoAction. We are excited to have your support. The many volunteers who work tirelessly to support our mission are key to the success of our organization. Below are some of the many volunteer opportunities available throughout the year and across all of our programs where you can get involved. For more information on volunteer opportunities, [contact us](https://www.mitoaction.org/about-us/contact-us/). ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Mito411-Woman-on-the-phone-in-her-living-room-1200x600.webp)#### Become a MitoChampion Become a MitoChampion today to make a lasting impact on the mito community! [Learn More](https://www.mitoaction.org/join-the-cause/volunteer/mito-champions/) ![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_130-1200x600.jpg)#### Create a Fundraiser Create a fundraiser today to help make a difference for mito patients and families! [Learn More](https://www.mitoaction.org/join-the-cause/volunteer/create-a-fundraiser/) ![High School brings new challenges for kids with mito and higher expectations from educators.](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Energy-4-Education-Teens-in-a-High-School-Classroom-1200x600.webp)#### Share Your Ideas MitoAction is always looking for fresh new ideas that can be developed and used by our organization. [Learn More](https://www.mitoaction.org/join-the-cause/volunteer/share-your-ideas/) --- ### [Become a MitoChampion](https://www.mitoaction.org/join-the-cause/volunteer/mito-champions/) **Published:** May 22, 2019 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Volunteer](https://www.mitoaction.org/join-the-cause/volunteer/ "Volunteer") # Become a MitoChampion Become a MitoChampion today to make a lasting impact on the mito community! ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Mito411-Woman-on-the-phone-in-her-living-room-1024x683.webp) MitoAction uses our monthly MitoChampion meetings as a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. Our goal is that through trainings and networking, our MitoChampion families and patients will gain tools, resources, and support to help educate the greater community about mitochondrial disease! Our MitoChampion program is a collaborative group and our goal is to support projects that are important to our MitoChampions! So, if you have a new idea of how you want to raise awareness and hope, that’s great! We encourage members to bring these ideas to group so we can encourage, provide feedback, and support each other! [Email to Join!](mailto:sharry@mitoaction.org) --- ### [Create a Fundraiser](https://www.mitoaction.org/join-the-cause/volunteer/create-a-fundraiser/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Volunteer](https://www.mitoaction.org/join-the-cause/volunteer/ "Volunteer") # Create a Fundraiser Create a fundraiser today to help make a difference for mito patients and families! ![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_130-1024x715.jpg) Together, we’re changing day to day lives through education, support and advocacy. Raising funds and awareness are a crucial part of this effort. Create a fundraiser today to help make a difference for mito patients and families. You can make a difference and at MitoAction, we’re behind you every step of the way. ### There are many ways that you can create a fundraiser and get involved! - **Satellite Event or 5K** – A terrific way to bring your community together while having fun and spreading awareness - **Join Team MitoAction** – Turn your 5k, marathon or Triathalon into a fundraiser. Host or participate in an event of your choice while raising funds and awareness for the fight against mitochondrial disease. Members of Team MitoAction has run the Boston Marathon, the Falmouth Road Race and more! - **Tournaments** – Make a difference and have fun by hosting a sporting tournament such as hockey, dodgeball or soccer. Spread awareness further than your town by getting local school involved too. - **Restaurant Night** – Many restaurants offer “charity nights” in which they will donate a percentage of all sales on a specific date to your charity! - **Garage or Yard Sales** – Everyone has things they want to get rid of. This is an easy way to help friends, family and your neighbors do a little spring cleaning to benefit our mito families. - **“A-Thons”** – Walk, run, bowl, climb whatever your interests may be can create a fun opportunity to raise awareness for mitochondrial disease - **Bake or candy sale** – Everyone loves a good treat. Why not sell these goodies to support our mito community. - **Direct Sales Home Party** – Companies like The Pampered Chef, Longaberger Baskets and Thirty One are always eager to help you host a party at your home, with a percentage of sales donated to charity. - **Car Wash** – This is a really fun way to raise money and get the kids involved! - **Birthday & Holiday Fundraiser** – Encourage friends and family to donate to MitoAction in lieu of gifts for your birthday, holidays or other special occasion. - **Golf Tournament** – Do you have friends or colleagues who love to hit the links? Organize an afternoon of golf and you can even include a raffle or silent auction. Create a fundraiser today to get started! For more information, email us at or download our Third Party Events Manual. [Sign up to Host a Third Party Event](https://give.mitoaction.org/campaign/mitoaction-fundraisers/c168496) [Download our Third Party Events Manual](https://www.mitoaction.org/wp-content/uploads/2022/12/MitoAction-third-party-event-guide.pdf) --- ### [Share Your Ideas](https://www.mitoaction.org/join-the-cause/volunteer/share-your-ideas/) **Published:** March 21, 2019 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Volunteer](https://www.mitoaction.org/join-the-cause/volunteer/ "Volunteer") # Share Your Ideas MitoAction is always looking for fresh new ideas that can be developed and used by our organization. If you think you have an idea, we would like to hear from you. ![High School brings new challenges for kids with mito and higher expectations from educators.](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Energy-4-Education-Teens-in-a-High-School-Classroom-1024x683.webp) ### We Need Your Help to Meet our Mission! Have you been thinking about what you would do to improve the lives of families living with mitochondrial disease, if only you had the support you need? Well, NOW YOU DO! MitoAction is always looking for fresh new ideas that can be developed and used by our organization. If you think you have an idea, we would like to hear from you. To submit an idea, please fill out the form below! We are looking for projects that are specific to [our mission](https://www.mitoaction.org/about-us/ "About MitoAction"), but you are free and encouraged to be creative in thinking of ways to do this. Some ideas to get you started: - New venues or strategies for raising awareness in the public, in the health community, in the education community. - Programs to teach patients and families strategies for coping with the many aspects of mitochondrial disease from day to day (medical, social, educational, practical, spiritual…). - Programs to help individuals and families network with one another. - New and creative ideas for fundraising. - New ideas for documents, videos, literature to be produced. - Ideas for speakers, workshops, or events. We look forward to reviewing your idea! [Share an Idea](mailto:info@mitoaction.org) --- ### [Raise Your Voice](https://www.mitoaction.org/join-the-cause/raise-your-voice/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # Raise Your Voice ##### MitoAction’s advocacy resources are designed to assist patients and families in raising their voice and engaging in their community. **ad·vo·ca·cy:** The act of pleading or arguing in favor of something, such as a cause, idea, or policy; active support. MitoAction’s advocacy resources are designed to assist patients and families in raising their voice and engaging in their community. It’s all about making others aware of the challenges and issues that affect patients and families with mitochondrial disease. ![](https://www.mitoaction.org/wp-content/uploads/2025/03/Raise-Your-Voice-—-Woman-at-the-US-Capitol-—-MitoAction-1200x600.webp)#### Take Legislative Action Mito411 offers patients a direct link to someone who understands by means of a one-on-one phone call. [Learn More](https://www.mitoaction.org/join-the-cause/raise-your-voice/take-legislative-action/) ![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-054-1200x600.jpg)#### Mitochondrial Disease Awareness Week Support Calls include a wide array of online support for different groups. Calls range from general support, to specific groups including FAODs, young adults, and men’s calls. There is something for everyone. [Learn More](https://www.mitoaction.org/join-the-cause/raise-your-voice/awareness-week/) ![](https://www.mitoaction.org/wp-content/uploads/2025/03/Open-Mic-—-MitoAction-1200x600.webp)#### Open Mic & Art Show MitoPlaydates helps families with mito children to facilitate chances to interact with other local families on a similar journey. [Learn More](https://www.mitoaction.org/join-the-cause/raise-your-voice/open-mito-mic-art-show/) ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-MitoAction-Memories-Memorial-candle-1200x600.webp)#### MitoAction Memories MitoAction Memories is aimed at providing the delicate, yet necessary, support to families navigating their grief after losing a loved one. [Learn More](https://www.mitoaction.org/programs-support/patient-and-family-support/memories/) --- ### [Join the Cause](https://www.mitoaction.org/join-the-cause/) **Published:** November 29, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # Join the Cause ##### Explore numerous opportunities to get involved in mitochondrial disease advocacy and make a difference! Looking for a way to join the cause and help MitoAction by raising awareness and funding for our mito community? Explore numerous opportunities to get involved in mitochondrial disease advocacy and make a difference! Learn about supporting MitoAction through monetary giving, becoming an advocate, participating in events, or volunteering your time. Together, let’s create an impact! ![](https://www.mitoaction.org/wp-content/uploads/2023/01/2019-Matthew-Harty-MitoClassic-01-1024x768.jpg)## [Giving](https://www.mitoaction.org/join-the-cause/giving/ "Giving") There are many ways that you can show your support of MitoAction and the families we serve. Whether it’s a [donation to one of our many programs](https://www.mitoaction.org/join-the-cause/giving/donate/), a [matching gift through your employer](https://www.mitoaction.org/join-the-cause/giving/matching-gifts/) or [shopping at one of our retail partners](https://www.mitoaction.org/join-the-cause/giving/shop-for-mitoaction-2/), you can make a direct impact and support our mission to improve the lives of families affected by mitochondrial disease. [Learn More](https://www.mitoaction.org/join-the-cause/giving/) ![](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-02-Blurred-1024x683.jpg)## [Become a Volunteer](https://www.mitoaction.org/join-the-cause/volunteer/ "Volunteer") There are many volunteer opportunities throughout the year and across all of our programs where you can get involved in mitochondrial disease advocacy. Your skills and your time can provide much-needed support for MitoAction programs, events, and more! By volunteering, you can contribute to raising awareness, organizing fundraising campaigns, assisting with educational initiatives, and supporting individuals and families affected by mitochondrial disease. Join our dedicated team of volunteers and make a difference in the lives of those impacted by this condition. Together, we can create a stronger, more supportive community. [Learn More](https://www.mitoaction.org/join-the-cause/volunteer/) ![](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-09-1024x683.jpg)## [Raise Your Voice](https://www.mitoaction.org/join-the-cause/raise-your-voice/ "Raise Your Voice") One of the best ways to get involved in MitoAction’s mission is to become an advocate in local and national policy issues that affect mitochondrial disease and the general rare disease community. By joining our advocacy efforts, you can make a meaningful impact on legislation, research funding, and access to treatments. Whether it’s attending legislative meetings, sharing your personal story, or engaging with policymakers, your voice can shape policies that improve the lives of those living with mitochondrial disease. Together, let’s be a powerful force for change and ensure a brighter future for our community. [Learn More](https://www.mitoaction.org/join-the-cause/raise-your-voice/) --- ### [Muscle Biopsy Testing](https://www.mitoaction.org/mitochondrial-disease/diagnosis/muscle-biopsy-testing/) **Published:** October 17, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Diagnosis](https://www.mitoaction.org/mitochondrial-disease/diagnosis/ "Back to Diagnosis") # Muscle Biopsy Testing In order to diagnose whether or not you or your child has mitochondrial disease, sometimes health care providers must do tests on muscle tissues that have many mitochondria located in it. ![](https://www.mitoaction.org/wp-content/uploads/2025/03/Muscle-Biopsy-—-Doctor-Taking-a-Muscle-Biopsy-Sample-—-MitoAction-1024x683.webp) In order to diagnose whether or not you or your child has mitochondrial disease, sometimes health care providers must do tests on muscle tissues that have many mitochondria located in it. ## About Muscle Biopsy Testing A small piece of muscle, usually the size of the end of our little finger is removed from the upper thigh of a patient for this testing. (The removal of this small piece of tissue does not cause permanent damage to the patient but does leave a scar several inches long.) The testing completed on this muscle tells us whether or not a certain person can produce enough energy to function normally or whether or not he/she has a problem making too little energy. The testing is complicated and takes many weeks to complete. ## Test Results If the testing indicates that a given patient does indeed have a mitochondrial disorder, that person is then screened every year for many associated problems found with these diseases (such as diabetes and thyroid disease). This helps prevent many treatable complications. [Treatment of mitochondrial disorders](https://www.mitoaction.org/mitochondrial-disease/diagnosis/treatment/) is centered around vitamin, supplement and co-factor therapy which improves mitochondrial function, and helps reduce symptoms in many patients. Nutrition, hydration, and energy conservation are also critically important! ## Frequently Asked Questions about Muscle Biopsies What is a muscle biopsyAlthough more forms of mitochondrial disease can now be detected by simple blood tests, avoiding the need for a biopsy, a number of patients still may require a close look at their energy-producing pathways in the muscle. Special studies on muscle tissue have long been the standard for investigating mitochondrial or other metabolic myopathies. To look closely at the energy-producing pathways, tissue rich in mitochondria is needed. The tissues that house the most mitochondria are the brain, kidney, liver, heart, and skeletal muscle. Muscle tissue is usually chosen. The mitochondria are removed from the muscle tissue and studied. Through the biopsy, a physician can tell whether you make energy as well as normally expected. What are the steps with a biopsy?The following is an example of the steps that typically occur when a geneticist is involved: - You will come to a geneticist who specializes in mitochondrial/metabolic disorders by a referral from your primary physician or a neurologist or by locating one yourself. - The geneticist reviews your records and any testing done prior to recommending a biopsy. - If a muscle biopsy is warranted, the geneticist coordinates with the surgeons and labs. - The surgeon and labs work with you and your insurance company regarding coverage approval. - The labs report their findings to the geneticist. - The geneticist interprets and compiles the results into a report that should be understandable to you and your primary physician. - The report will be shared with physicians you have requested to receive a copy. - Most geneticists will contact you directly with the results. Are there other less invasive and less costly tests that may rule out the need for a biopsy?It is rare a biopsy is the first course of action. Completing some tests FIRST may circumvent the need for an invasive and costly procedure. A chromosome microarray study may be warranted if you have other neurological issues, including development or learning problems, seizures, etc. A simple blood draw for DNA testing may negate the need for a biopsy. Even if a muscle biopsy is required, some tests may be performed in a stepwise approach that could drastically reduce costs. Essentially, perform Test A before Test B, since if Test A determines there is an abnormality, there may be no reason for Test B. Fresh vs. Froze muscle biopsiesIn most cases, a frozen muscle biopsy will be as accurate as a fresh biopsy. Complex 1 is the most commonly affected component of the energy-producing pathway resulting in mitochondrial disease. Data comparing fresh vs. frozen samples showed that while Complex 1 activity was at times more robust in fresh samples, the end results were otherwise comparable, indicating the frozen samples were just as likely to diagnose a patient with a mitochondrial disorder as a fresh. What information may I expect from a muscle biopsy?Expect easy to understand results. The report should clearly state if you do or do not have a mitochondrial myopathy. The muscle obtained at your biopsy is typically used for histological/histochemical studies and enzymology. The histology studies look at the general structure of the muscle tissue and for the presence or absence of compounds and chemicals that provide clues to the “health” and function of the muscle tissue. These findings can be helpful if they confirm abnormal DNA or enzyme testing, but be aware that these studies can come back as normal even in patients who are ultimately proven to have a mitochondrial disease. How will a biopsy help me?A biopsy can help to confirm or rule out a diagnosis. A diagnosis tells you the cause of your disease and how to treat it. It provides an understanding of what this means for you over time as well as the impact on other family members. A diagnosis enables you to enter into research or clinical treatment. What is the cost of a muscle biopsy?Muscle biopsies are expensive. Frozen biopsies are far less expensive than fresh biopsies. Costs can range from several thousand dollars to tens of thousands of dollars. The price tag includes surgical and anesthetic costs and actual testing fees. Although much of it may be covered by your insurance, typically there are out-of-pocket expenses. Be aware that: - **Pre-approved does not mean you are not financially responsible:** You may become financially responsible for a significant portion even though your insurance “pre-approved” the biopsy. Carefully review the forms you sign. Ask questions to learn what your responsibilities are and what the provider’s responsibilities are. - **There are factors that can impact what you may be responsible for, including:** Whether the lab is under contract with your insurance; if there will be add-on testing the lab or provider orders AFTER the biopsy has been pre-approved with your insurance (you may be unaware of these add-on tests until it is too late); testing or procedures that are not covered but billed for by the provider; insurance filing mishaps. - **Lifetime insurance caps play a role:** Even if your insurance company covers the cost of a biopsy, lifetime caps on insurance expenditures can add up over the years. What are my options to reduce the cost of a muscle biopsy?One of the simplest ways to reduce costs is to have only the testing you need to help diagnose your case. You can insist mitochondrial testing be done in a stepwise fashion on frozen samples unless there is a compelling reason to do otherwise. **Step 1.** Histological and histochemical muscle studies should be completed on collected tissue. **Step 2.** Review the histology results with your primary physician before moving forward with more testing. **Step 3.** Mitochondrial enzymology should be completed or other enzyme testing done if another metabolic myopathy is considered. **Step 4.** Review the enzymology results with your primary physician before moving forward with additional DNA testing. Does the provider ordering the mitochondrial testing have any conflict of interest?Some physicians do have an interest in the testing they order as they may: - have ownership, stock, or a financial interest in surgical centers, hospitals, or laboratories; - receive financial incentives from pharmaceutical or biotech companies; - have research grants; - have other arrangements that are linked to your care. Most physicians will remain open and honest about these conflicts of interest; request full disclosure. Important questions to ask your provider when considering a muscle biopsy- Why is a biopsy recommended? - Why not perform less costly and less invasive tests first and then proceed with a biopsy? There should be a compelling, understandable reason to bypass available tests that can rule out a biopsy. - Will I be provided a sample biopsy report so I know what to expect? - Who will contact me with the results? Most geneticists will contact you directly, especially if the results and abnormal. - When should I expect the results? - Do you have any financial or research incentive to the types or number of tests you order? - What is the ratio between the number of patients you see and the number on whom you request biopsies? - Can you provide in writing the cost of a muscle biopsy and what is included? - What factors will impact the cost of the biopsy? - What factors will impact my out-of-pocket expenses for the biopsy? Historically, what dollar range have you seen patients become responsible for? - If additional testing or procedures are required after you gain pre-approval from my insurance company, will I be held financially responsible for these costs? - Will you provide me with all the consent forms before my appointment so I may review them? - Will you provide in writing if any remaining biopsy material exists? You have the right to know if there is any genetic material remaining after your biopsy, but you will need to request the information since it is not standard practice to include it in the biopsy report. - Will you provide in writing how I can have my remaining biopsy material released to another facility for storage? You have the right to unrestricted access to your remaining genetic material, unless you have signed documents to the contrary. Storing your muscle biopsy material prevents unwanted research on your genetic material. The lab should provide in writing the procedures to release tissue or samples upon your request, their turnaround times to release samples, and the fees. Find out how your tissue/sample will be stored and how long the lab holds onto it. - Who has control over my genetic material and how may they use it? - Do you conduct research? In writing, you should always have the right to opt out of research without concern over how it may impact your care. - Do you have research incentive to the types or number of tests you order? - What controls are in place to safeguard my genetic material and genetic data from unwanted research if I choose not to be included in research? You should have the right in writing to opt out of and sequester/secure your genetic material from research without concern. - What do I have to do if I consent to be included in research at one point, but at a later date wish to be excluded from research? You have the right to withdraw from research at any point. Get clear instructions on how to withdraw in the documents you sign. --- ### [Mitochondrial Disease Diagnosis](https://www.mitoaction.org/mitochondrial-disease/diagnosis/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Mitochondrial Disease](https://www.mitoaction.org/mitochondrial-disease/ "Back to Mitochondrial Disease") # Mitochondrial Disease Diagnosis The field of mitochondrial medicine is relatively new. Having only developed over the past 25 years, mitochondrial disease still lacks specific biomarkers that could simplify a diagnosis. ![](https://www.mitoaction.org/wp-content/uploads/2024/07/Young-boy-and-his-mother-meeting-with-a-doctor-1024x683.webp) Mitochondrial conditions—as a group—are thought to affect about 1 in 4,300 people. However, there are many people living with a mitochondrial condition who remain undiagnosed or misdiagnosed. Since people with mitochondrial conditions can have so many different symptoms that can be more or less severe based on the person, diagnosing these conditions can be challenging. The field of mitochondrial medicine is relatively new. Having only developed over the past 25 years, mitochondrial disease still lacks specific biomarkers that could simplify a diagnosis. Currently, establishing a diagnosis can be challenging, costly, and at times invasive. Even though specialists are creating protocols for diagnosing mitochondrial disease, a diagnosis may still take years and involve many specialists. Mitochondrial disease is now known to occur at any age, although the adult disease may be more difficult to diagnosis because it can be more varied, subtle, and have a narrower spectrum of laboratory findings compared to mitochondrial disease that begins in childhood. ## Health & Family History The diagnosis of mitochondrial conditions usually begins by gathering a personal and family history, and with a detailed physical examination. Doctors will ask questions about common features of mitochondrial conditions including: - Extreme tiredness or fatigue - Muscle pain or weakness - Growth - Seizures - Vision changes - Hearing changes - Known problems in the heart, liver or kidneys - Gastrointestinal (GI) signs like nausea, vomiting, constipation or diarrhea - Hormone changes or diabetes - History of infection - Changes in behavior or memory Doctors may also ask about family history. It is important to note that people with a mitochondrial condition can have different symptoms or be more severely affected than others, even in the same family. Some people in a family may not even know that they have a mitochondrial condition if it does not impact their daily life very much. ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Doctor-filling-out-questionaire-1024x683.jpg) Before your first appointment, it can be helpful to gather information about your family’s health including: - What conditions or symptoms each person has - When symptoms first began - If a cause was ever found for their features ## Physical Tests Based on the reported personal and family history, a doctor may order some physical tests. These can differ based on the condition a doctor is suspicious of, but can include: - Neuroimaging. These tests look at the structure of the brain or estimate the amount of certain brain metabolites. Tests can include: - Magnetic Resonance Imaging (MRI) - Spectroscopy - Computed Tomography (CT) - Proton Magnetic Resonance Imaging (MRS) - Diffusion Tensor Imaging - Electromyography (EMG) and nerve conduction studies (NCS/NCV). These tests look at the electrical activity in the muscles. - Vision and eye tests. These tests tend to be more involved than those typically done when someone is getting a prescription for eyeglasses or contact lenses. These can include: - Dilated Fundus examinations - OCT imaging - Visual Acuity screening - Color testing - Slit Lamp examination - Hearing screening. - Heart studies. These tests can look for both structural changes and abnormal heart rhythms. ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Lab-technician-examining-blood-samples-1024x683.jpg)## Blood, Urine, and Spinal Fluid Tests Doctors may also order testing in urine, blood (serum or plasma), or the spinal fluid (CSF). These can include: - Complete blood count (CBC) - Organic acid analysis - Amino acid analysis - Total and free carnitine levels, and acylcarnitines - Thyroid function studies - Other biomarkers like: - Lactate - Pyruvate - Creatine phosphokinase - Transaminases - Albumin - Quantitative 3MG - Uric acid - 5-methyltetrahydrofolate - FDF21 - Glutathione - Neopterin ## Muscle or Other Tissue Biopsy Tests Biopsy testing is used to directly see mitochondrial changes in the [muscle](https://www.mitoaction.org/mitochondrial-disease/diagnosis/muscle-biopsy-testing/ "Muscle Biopsy Testing") or other tissue like the liver. To do this testing a small piece of muscle tissue is taken from specific parts of the body. This testing has historically been considered the “gold standard” for diagnosing mitochondrial conditions. However, this has begun to change in recent years. The most recent [consensus guidelines](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5000852/) state that this testing should be done when the diagnosis cannot be confirmed with DNA testing. ## Genetic Testing Mitochondrial conditions can be caused by genetic changes, sometimes called mutations or variants in the DNA. Depending on the condition in question, a doctor may order testing on two different types of DNA: Nuclear DNA (nDNA) Mitochondrial DNA (mtDNA). The nDNA, is the set of DNA found in the nucleus of every cell and is inherited from both parents. The mtDNA, is the set of DNA contained in the mitochondria of a cell and is inherited from the mother through her eggs. There is not one genetic test that can tell doctors everything about the nuclear or mitochondrial DNA. Some tests look for changes in the sequence, or “spelling”, of a gene. Others look to see if there are small missing or extra pieces of DNA or look for large missing or extra pieces of DNA. Different types of genetic tests can look for: - One specific genetic change known to be common in a gene (site-specific testing) - Changes in a single gene - Changes in multiple genes (panel testing) - Changes across the whole exome (WES), meaning all coding parts of the DNA - Change on the whole genome (WGS), meaning the entire DNA including non-coding regions If someone has whole genome (WGS) or whole exome (WES) testing, doctors usually need to specifically order testing of the mitochondrial DNA (mtDNA) if they would like the mtDNA reviewed. It is possible for some people with a mitochondrial condition to have a negative genetic testing. Genetic testing can be performed on multiple tissue types including blood, saliva, and tissue. There are benefits and limitations to testing each sample type. ## Challenges to Diagnosis Every single cell in the body has its own mitochondria. If there is a genetic change in the mitochondrial DNA, the percentage of mitochondria that have this genetic change (percent heteroplasmy) can be different in each cell. This can cause different parts of the body to be more affected than others. Even if a biopsy of one tissue type is not able to find mitochondrial changes, this does not mean that there could not be mitochondrial changes in other parts of the body. **Learn More about Testing:** **Expert Series:** [What You Should Know About Genetic Testing for Mitochondrial Disorders](https://www.mitoaction.org/resources/what-you-should-know-about-genetic-testing-for-mitochondrial-disorders/) **Expert Series:** [Whole Genome Sequencing for Rare Disorders: The Future Is Here](https://www.mitoaction.org/resources/diagnostics/) #### References: Parikh, S., Goldstein, A., Koenig, M. K., Scaglia, F., Enns, G. M., Saneto, R., Anselm, I., Cohen, B. H., Falk, M. J., Greene, C., Gropman, A. L., Haas, R., Hirano, M., Morgan, P., Sims, K., Tarnopolsky, M., Van Hove, J. L. K., Wolfe, L., & DiMauro, S. (2015, September). Diagnosis and management of mitochondrial disease: A consensus statement from the Mitochondrial Medicine Society. Genetics in medicine : official journal of the American College of Medical Genetics. Retrieved October 20, 2022, from Last Update: 2022OCT21 J. Dronen, CGC --- ### [Mito Cocktail](https://www.mitoaction.org/mitochondrial-disease/treatment/mito-cocktail/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Treatment](https://www.mitoaction.org/mitochondrial-disease/treatment/ "Back to Treatment") # Mito Cocktail “Mito Cocktail” is the name given to a variety of vitamins and supplements which are commonly used by adults and children who have been diagnosed with mitochondrial disease. ![](https://www.mitoaction.org/wp-content/uploads/2025/03/Compounding-Pharmacist-Making-Capsules-—-MitoAction-1024x683.webp) “Mito Cocktail” is the name given to a variety of vitamins and supplements which are commonly used by adults and children who have been diagnosed with mitochondrial disease. While there is no cure for mitochondrial disease, many types of the disease including mitochondrial myopathy, mitochondrial cytopathy, MELAS, PDCD, or Complex I, II, III, and IV are responsive to specific vitamin and supplement therapies. ### **Consult with your physician before beginning or altering any medication, vitamin or supplement regimen.** The supplements and vitamins used by Mito patients are often high doses and could require a patient to take up to 50 different pills per day. A compounding pharmacist ([find one in your area)](https://www.bullseyelocations.com/pages/CompounderConnect) through the [International Academy of Compounding Pharmacists](http://www.iacprx.org/) (IACP), can create a “cocktail” in a liquid, capsule or other form that combines the pure powdered form of the prescribed supplements and vitamins. The final medication is usually a much smaller amount than if otherwise taken, and can even be flavored to improve palatability. By avoiding fillers common in over the counter tablets, an individual’s allergy or dietary restrictions can be accommodated. The exact compound, including dosage and ingredients, is determined by the patient’s physician and differs depending on an individual Mito patient’s diagnosis, clinical symptoms, weight. ### Most Common Ingredients of the Mito Cocktail **Coenzyme Q-10** Coenzyme Q-10 (Coenzyme Q10, CoQ10, CoQ-10, CoQ, ubiquinone, Q-Gel®), is a fat-soluble vitamin-like substance present in every cell of the body and serves as a coenzyme for several of the key enzymatic steps in the production of energy within the cell. It also functions as an antioxidant protecting against accumulation of harmful free radicals, which is important in its clinical effects. Many patients report increased energy while using Coenzyme Q-10, and thus it is a common “front-line” approach to supporting children and adults with mitochondrial disease. Frequently reported side effects include stomach upset and sleep disturbance, so pharmacists typically recommend taking Co Q-10 doses earlier in the day, with food. Therapeutic levels may need time to be established, so patients may not see an immediate beneficial effect. In addition, the excess of the substance that is not used is stored in the fat cells, so proper dosing is important. **Complex Vitamins** Some B-vitamins are cofactors which participate in important mitochondrial reactions. Most of the B-vitamins have a bitter taste and more palatable if flavored. B-vitamins are water soluble; that is, they are excreted if not used, and the benefit from taking these vitamins should be felt immediately. - **Vitamin B1 (Thiamine)** This is a water soluble vitamin which helps break down carbohydrates so the body can better use them, helps with growth and maintenance of muscle tone, and aids memory. The only possible side effect sometimes noted is drowsiness. - **Vitamin B2 (Riboflavin**) Also a water soluble vitamin, B2 is necessary for energy production in the mitochondria and increases muscle performance as well as helping maintain healthy mucous membranes, skin, hair and nails. The only side effect noted is the tendency to turn urine an orange color. Given in the form of Riboflavin Biphosphate can improve the taste of this vitamin. - **Vitamin B3 (Niacin)** Occasionally used, B3 can often cause flushing of the face so it is generally given separately first to see if any side effects will occur before it is added to the cocktail. - **Vitamin B6 (Pyridoxine) and Vitamin B12 (Cobalamine)** These B vitamins are frequently part of the compounded mix which Mito patients may use. **Other Antioxidants** Antioxidants decrease free radical accumulation in the cells and therefore are used for Mito patients as well. ***Alpha Lipoic Acid*** is probably the most commonly prescribed anti-oxidant used in the Mito cocktail. - **Vitamin C** This is used for its help in the healing process and to ward off infections but can cause some stomach upset and occasionally headaches when the dose is increased. - **Vitamin E** This protects cell membranes and improves neurological function. Usually the dose is no higher than 400 – 600 mg per day for an adult. This can interfere with coumadin/warfarin medications, so be aware of this. - **Vitamin K1** This vitamin must be prescribed by a physician and used with caution, as there is a very small safe range for the dosage of this vitamin. - **L-Carnitine** Also prescribed by a physician, L-Carnitine helps transport fatty acids and improve the strength and tone of muscles. Side effects may include diarrhea, and a fishy odor which may be excreted via the sweat glands. Some patients report decreased fatigue and energy improvements by taking L-Carnitine. It is taken in either tablet or liquid form and is usually taken separate from the compounded cocktail. - **Creatine** Creatine helps maintain muscle mass and increases energy for cells. Its side effects include diarrhea and drowsiness. Dosages range from 5 grams/day for children to 10 grams/day for adults and is generally compounded into liquid or capsule form. All of the vitamins and supplements noted above are added or not added to a cocktail as specified by a patient’s need. Each cocktail is patient specific. **Please** **work with your doctor to determine the exact ingredients to be used in the compound that will be most beneficial for you.** --- ### [Energy Management](https://www.mitoaction.org/mitochondrial-disease/energy-management/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Mitochondrial Disease](https://www.mitoaction.org/mitochondrial-disease/ "Back to Mitochondrial Disease") # Energy Management Mitochondrial diseases are a varied group of disorders characterized by impaired energy production. With Mito, body systems can work intermittently and sometimes body systems don’t work at all. ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-MitoSocials-Little-boy-playing-on-playground-equipment-1024x683.webp) Energy is part of life. We often don’t pay much attention to the energy we use, until it is gone. One big snow storm or lightning storm with power outages quickly reminds us of how essential energy is to our entire beings. Having a mitochondrial disorder is like a permanent brown out. Systems work but intermittently and sometimes not at all. In fact, some systems become so devoid of energy that they begin to show signs of failure. Mitochondrial disease patients experience a variety of symptoms which can change rapidly throughout the day. Symptoms may be vague or specific, invisible to others or quite easy to identify, and mild or severe. Figuring out your pattern of symptoms and what triggers those symptoms will give you a better sense of control and help you take steps to get the energy level back to baseline quicker. As a parent, understanding your child’s mito baseline is key to keeping your child healthy and anticipating problems as early as possible. #### Energy In = Energy Out Everyone has a baseline – that comfortable place our bodies function well at. An individual’s baseline is really a balance between *conserving energy* (rest), *using energy* (activities), and *making energy* (nutrition and hydration). To work well, our bodies need to make and be provided enough energy to account for all activities – normal body functions as well as any exertion during the day with work, school and fun. In other words, Energy In = Energy Out! Any change in this equation from baseline requires modifications. Energy drains, such as illness, weather extremes, life stresses, etc., require extra energy or a body will not meet energy demands and symptoms will develop. This is true for all people, with or without mitochondrial disorders, and exactly why most people feel tired when they come down with a flu or bad cold. Patients with mitochondrial disorders experience a more profound effect from energy drains because of their defect in energy production and usage. These patients to not make energy well and do not use energy effectively either! Consider old cars vs. new cars. New cars are very energy efficient compared to old cars. Old cars, however, can be tuned to work just fine when one understands how best to fuel it and pace it. Living with a mitochondrial disorder is essentially like using a car with an energy inefficient system. As a parent of a child with Mito, better understanding your child’s energy system will help you to keep your child’s body run as well as it can and catch and treat problems early. #### Understanding Mitochondria Every cell in the body has mitochondria except Red Blood Cells. Mitochondria are the body’s energy factories and batteries and energy is required for life.. Normally functioning mitochondria make energy and help allocate energy to each cell. Our cells then work in concert to complete the jobs our body needs done. In a sense, our body is one big energy factory, and the mitochondria are the workers. We make energy with nutrition and rest. Foods, nutritional supplements, vitamins, and hydration all provide the building blocks necessary to make the fuel our body needs. The process of converting food and oxygen (fuel) into energy requires hundreds of chemical reactions, and each chemical reaction must run almost perfectly in order to have a continuous supply of energy. When one or more components of these chemical reactions does not run perfectly, there is an energy crisis, and the cells cannot function normally. As a result, the incompletely burned food might accumulate as poison inside the body. One way to conserve energy is by resting. Sleep helps recharge our batteries, and pacing activities during the day helps keep extreme draining at bay and builds in a buffer for us to remake some energy. Staying healthy is also important, as is good preventive care. Another important way to conserve energy is to keep both physical and emotional stress within limits as much as possible. Life bring stress and there is no way to avoid it all. Pure joy at a wedding or birthday party can be an energy drain, but people with mito should live life and not avoid the good stressors. Plan according with extra rest and good hydration and nutrition to help rebalance your energy. Exercise can be good for mitochondria, but activities well beyond your baseline will drain your energy bucket and cause negative symptoms such as pain, fatigue, and even signs of organ dysfunction if severe. The most common energy drains include: - Physical exertion: daily activities and extras such as sports - Negative moods: anxiety and depression - Hyperactivity - Ambient temperature extremes - Infections Respecting these energy drains helps to maximize energy conservation and use. #### Your ACTION Plan: Know your Baseline All have a unique baseline of how we make and use energy and function. This baseline changes for all over time but these change occur more dramatically for children with mito, especially when very young. Your baseline is specific for you, and changes from that baseline are typically predictable after you discover your energy drains and ways to restore energy reserves. #### The “Big 5” Baseline Features Baseline Features to monitor include: - Skin color - Basic vital signs (heart rate, respiratory rate and pattern, blood pressure and temperature) - Overall energy and alertness - Gastrointestinal function - Behavior and appearance You can turn these Big 5 Baseline Features into a simple checklist that can make a vague, difficult to grasp disorder start to become a bit more concrete and easier to understand and organize. By tracking these features daily, typically morning and night, you will become very well attuned to yourself or your child and learn patterns of features that indicate when you or your child is having a “good” day or a “bad” day. You will learn what patterns of features are reassuring and what features are worrisome. And you will have the salient information at your fingertips to provide to healthcare providers should medical attention be required. In essence, tracking the Big 5 Baseline Features becomes your key to understanding yourself or your child and knowing when to intervene. #### Have an ACTION Plan “Every action requires an equal and opposite reaction.” Who would have thought that we’d be applying Newton’s Third Law of Motion to our bodies? The goal is to keep the body’s energy bucket filled quicker than the losses can occur. Plan ahead for big activities and be creative when thinking. Learn more about [Managing Your Energy](https://www.mitoaction.org/day-to-day-with-mito/managing-your-energy/ "Managing Your Energy") in our [Day-to-Day with Mito](https://www.mitoaction.org/day-to-day-with-mito/ "Day to Day with Mito") tips. --- ### [Mitochondrial Disease Frequently Asked Questions (FAQs)](https://www.mitoaction.org/mitochondrial-disease/faq/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Mitochondrial Disease](https://www.mitoaction.org/mitochondrial-disease/faq/ "Back to FAQs") # Mitochondrial Disease Frequently Asked Questions (FAQs) ![](https://www.mitoaction.org/wp-content/uploads/2024/10/Young-Kids-in-Elementary-School-Classroom-Holding-Up-Their-Hands-—-MitoAction-—-Energy-4-Education-1024x683.webp) Mitochondrial disease is complicated, and people have lots of questions about it. We’ve included some of the most frequently asked questions about mito below. What is Mitochondrial Disease?Mitochondrial disease is an inherited, chronic illness that can be present at birth or develop later in life. “Mito” is progressive and can cause physical, developmental, and cognitive disabilities. Symptoms can be mild, such as tiredness or weakness, or they can be severe, such as poor growth, loss of muscle coordination, muscle weakness and pain, seizures, vision and/or hearing loss, gastrointestinal issues, learning disabilities, and organ failure. Approximately 1 in 4,000 people have Mito. There is no cure, but there are treatments that can help with the symptoms. What are Mitochondria?Mitochondria are tiny organelles found in every cell in the body except red blood cells. The number of mitochondria in a cell varies by tissue and cell type with higher numbers per cell found in high energy-requiring organs, such as the liver, heart, brain, muscles, pancreas, eyes, ears, kidney, and GI tract. - Mitochondrial failure causes cell injury that leads to cell death. When multiple organ cells die, organs begin to fail. - Mitochondria are known as the “powerhouse of the cell.” - Mitochondria are responsible for creating more than 90 percent of cellular energy which is necessary for the body to sustain life and support growth. - Mitochondria turn nutrients into cellular energy in the respiratory chain cycle. - Mitochondria have their own independent genome (mitochondrial DNA or mtDNA) that was likely derived from early bacteria. What are the Symptoms of Mitochondrial Disease?The severity of mitochondrial disease symptoms is different from person to person. The most common symptoms are: - Neuropsychological changes characterized by confusion, disorientation, dementia, and memory loss - Poor growth and failure to thrive (in children) - Loss of muscle coordination, muscle weakness and pain, low tone, exercise intolerance • Neurological problems, seizures - Autism, autistic spectrum, autism-like features - Visual and/or hearing problems - Developmental delays, learning disabilities - Movement disorders - Heart, liver or kidney disease - Gastrointestinal disorders, including severe constipation, diarrhea, swallowing difficulty, repeated vomiting, cramping, reflux - Diabetes - Increased risk of infection - Neurological issues, including difficult to treat seizures, migraines, and stroke or stroke like events - Thyroid and/or adrenal dysfunction - Autonomic dysfunction (may affect the functioning of the heart, bladder, intestines, sweat glands, pupils, and blood vessels - Respiratory issues - Lactic acidosis (the buildup of lactate in the body, which results in an excessively low pH in the bloodstream) How Common is Mitochondrial Disease?Infants, children, and adults may develop mitochondrial disorders. Experts in mitochondrial medicine describe a spectrum of disease, ranging from mild to severe. 1 in 4,000 people are estimated to have a genetically confirmed primary mitochondrial disease, yet many remain undiagnosed. In adults, many diseases of aging have been found to have defects of mitochondrial function, including, but not limited to: diabetes, Parkinson’s disease, Huntington’s disease, atherosclerotic heart disease, stroke, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), autoimmune disorders, environmental toxicities, and cancer. What Causes Mitochondrial Disease?For many patients, mitochondrial disease is an inherited genetic condition. Mutations can also be spontaneous as well as be induced. A patient may be found to have a de novo variant, or new mutation, meaning that the mutation arose in this patient early in development and was not passed down from a parent or previous generations. An uncertain percentage of patients acquire symptoms due to other factors, including mitochondrial toxins. It is important to determine which type of mitochondrial disease inheritance is present in order to pre- dict the risk of recurrence for future children. The types of mitochondrial disease inheritance include: ### Nuclear DNA (nDNA) inheritance: - nDNA is contained in the nucleus of the cell. This type of inheritance is also called, “autosomal inheritance.” - If the gene trait is recessive, often no family members appear to be affected. Two recessive mutations, one from each parent, are needed to express the disease. If parents both share the same recessive gene for a particular type of mitochondrial disease, 25% of children will get both mutated genes and have the disease, 25% will get no mutated genes and be healthy, and 50% will get a single mutation and be considered a “carrier.” Carriers, like their parents, present healthy but could pass the mutation to their offspring. - If the gene trait is dominant, the disease may occur in other family members. There is a 50 percent chance of the trait occurring in other siblings/ offspring. - Mitochondrial DNA (mtDNA) inheritance is contained in the mitochondria of the cell. There is a 100 percent chance of the trait occurring in other siblings because all of the mitochondria are inherited from the mother. Symptoms may be more or less severe due to heteroplasmy. Higher rates of heteroplasmy are typically associated with more severe disease. ### Combination of mtDNA and nDNA defects: - The relationship between nDNA and mtDNA and their correlation in mitochondrial formation is a new area of study. It is believed that MtDNA and nDNA communicate with each other. Researchers think that such interactions may regulate the expression of particular sets of genes. This communication may explain how mitochondria are involved in cellular processes not related to energy generation, such as cell growth and death. ### Random occurrences - Medicines or other toxic substances can trigger mitochondrial disease. Diseases specifically from deletions of large parts of the mtDNA molecule are usually sporadic without affecting other family members. How to Diagnose Mitochondrial DiseaseNo reliable and consistent means of diagnosis currently exist. The road to diagnosis is often personalized based on symptoms. Clinicians are working to create diagnostic and treatment standards for mitochondrial medicine. - Diagnosis can be made by DNA testing and/or muscle biopsy. - Diagnosis of mitochondrial disease can be invasive, expensive, time-consuming, and labor-intensive. Therefore, evaluation is not taken lightly. Doctors experienced in diagnosing and treating these diseases will take either a step-wise approach to diagnosis or, in some centers, the evaluation takes place over a few days. The evaluation includes a combination of clinical observations and laboratory tests. ### Diagnosis can be made by: - Evaluating the patient’s family history - Performing a complete physical examination - Performing a neurological examination - Performing a metabolic examination that includes blood, urine, and optional cerebral spinal fluid tests - Performing other tests, depending on the patient’s specific condition and needs. These tests might include: Magnetic resonance imaging (MRI) or scan (MRS) if neurological symptoms are present, Retinal exam or electroretinogram if vision symptoms are present, Electrocardiogram (EKG) or echocardiogram if heart disease symptoms are present, Audiogram or BAEP if hearing symptoms are present, Blood test to detect thyroid dysfunction if thyroid problems are present, Blood test to perform genetic DNA testing More invasive tests, such as a skin or muscle biopsy, might be performed as needed. ### Misdiagnosis Further progression of symptoms can occur if the symptoms are missed and opportunities for treatment and support are not recognized. Lack of understanding of the disease and misinterpretation of symptoms can lead to misdiagnosis. How is Mitochondrial Disease Treated?Clinicians and researchers are working to develop therapies to treat and cure mitochondrial disease. Current treatments and therapies can help reduce symptoms, delay or prevent the progression of the disease. Even though a cure for mitochondrial disease has not been discovered, many clinical trials are under way to evaluate new therapies. Physicians specializing in metabolic diseases have found that every child and adult is biochemically different, meaning that no two people will respond to a particular treatment in a specific way, even if they have the same disease. Therefore, treatment is individualized for each patient and type of mitochondrial disease. Mitochondrial patients may become ill more quickly and more severely than other people because of a lower cellular reserve of energy. Cellular stresses, such as illness, fatigue, or poor nutrition, may lead to cell injury and associated worsening of baseline symptoms or the onset of new symptoms. ### Exercise Research has shown that both endurance (such as running) and resistance (such as weight lifting) exercise can benefit patients with mitochondrial disease. Some benefits include an increase in mitochondrial health, antioxidant and muscle mitochondrial enzyme activity, oxygen uptake, and muscle strength, as well as improved clinical symptoms and a decrease in resting and post-exercise blood lactate levels. The majority of research has shown exercise that is slowly increased can be safe for patients with mitochondrial diseases. Exercise should begin with short duration and low intensity. Exercise intolerance is common with mitochondrial disease, but even patients who have a difficult time exercising should still be encouraged to exercise beginning at their current level of function. Patients should consult their physician before beginning to exercise as cardiac or other evaluations may be needed. Physicians may recommend supervised progressive exercise aimed at improving function. ### Treatment during illness - Carry an emergency care plan that explains the disorder and management recommendations. - Wear a Medic Alert bracelet or similar device. - Take precautions to prevent prolonged fasting, including IV hydration for prolonged vomiting or other GI issues or fasting prior to procedures. - IV hydration and/or lipids may be necessary for acute decompensation (organ failure from functional overload). - Avoid, or use with caution: valproic acid, statins, metformin, high-dose acetaminophen, and selected antibiotics, including aminoglycosides, linezolid, tetracycline, azithromycin, and erythromycin. ### Vitamins and supplements prescribed typically include: - Coenzyme Q10 – ubiquinol preferred - Alpha lipoic acid - Riboflavin, and possibly other B vitamins - Arginine – for stroke-like events - Folinic acid – only routine for documented CSF deficiencies and diseases known to cause deficiency and considered with central nervous system manifestations - L-carnitine – for carnitine deficient patients only - Vitamin C – for intercurrent illness supplement Diet therapy, as prescribed by your doctor along with a registered dietitian, may be recommended. *Important: A physician should always guide specific treatments. Patients should not take any supplements or try any treatment unless prescribed by a doctor.* What are the Challenges of Living with Mitochondrial Disease?- Mitochondrial disease can affect multiple organs, multiple family members, and multiple generations. - Lack of awareness and understanding of the disease can delay treatment and diagnosis. - Families are continuously forced to expend energy to explain their disease, advocate for themselves, and fight for services. - Mitochondrial disease is often an “invisible disease.” On a good day, a patient may look fine and healthy, with more energy and appear rested. But on a bad day, patients can appear tired or even significantly ill. Repeated bad days may lead to decompensation and patients may have difficulty returning to baseline. - Mitochondrial disease is unpredictable. Symptoms can vary day to day or even hour to hour. - Mitochondrial disease is difficult to diagnose. Difficulties establishing a diagnosis interfere with a patient’s ability to obtain adequate recognition and appropriate medical care. - An individual can become symptomatic at any time in life despite the fact that mitochondrial disease is inherited. To connect with others facing the challenges of mitochondrial disease, visit the MitoAction closed [Facebook](https://www.facebook.com/groups/22185295570/) group or join our [weekly support calls](https://www.mitoaction.org/programs-support/weekly-support-calls/). ### More Information You can find more information about mitochondrial disease on our website. Click on the buttons below for more information about different mito topics. [Diagnosing Mito](https://www.mitoaction.org/mitochondrial-disease/diagnosis/) [Mito Symptoms](https://www.mitoaction.org/mitochondrial-disease/symptoms/) [Types of Mito](https://www.mitoaction.org/mitochondrial-disease/types-of-mitochondrial-diseases/) --- ### [Mitochondrial Care Network](https://www.mitoaction.org/mitochondrial-disease/doctors/mcn/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Mitochondrial Disease](https://www.mitoaction.org/planning-and-preparation/ "Back to Section") # Mitochondrial Care Network The Mitochondrial Care Network (MCN) was created to help improve the quality of mitochondrial patient care and implement best practices and standards of care in mitochondrial medicine. ![](https://www.mitoaction.org/wp-content/uploads/2024/07/Young-boy-and-his-mother-meeting-with-a-doctor-1024x683.webp) The Mitochondrial Care Network (MCN) is a collaboration between mitochondrial physicians in the [Mitochondrial Medicine Society](http://www.mitosoc.org/) (MMS) and US based patient advocacy groups MitoAction and United Mitochondrial Disease Foundation. Each MCN site director leads a team of physicians with expertise in caring for patients with mitochondrial disease. The network was created to help improve the quality of mitochondrial patient care and implement best practices and standards of care in mitochondrial medicine. Over time, the MCN plans to determine the gaps in mitochondrial disease care and help improve diagnosis, treatment and patient outcomes. To become part of the network, a physician has to show: - A commitment to and focus on mitochondrial disease clinical care, having routinely cared for a large number of patients with genetic mitochondrial diseases - An academic and research interest in mitochondrial disease with regular scholarly activity in the field - The presence of a team of multiple specialists at their institution knowledgeable in mitochondrial disease The initial network was launched on June 28, 2018 after a review of applications. A request for applications was announced in January 2018 whereby any clinician in the United States who provides care to patients with mitochondrial disease could apply. Those centers with appropriate experience and expertise were chosen to participate in the pilot phase. Over the coming months, the group will begin working on assessing immediate gaps in mitochondrial clinical care. The project is currently governed and steered by members of the patient advocacy groups and MMS including Amy Goldstein, Amel Karaa, Kira Mann, Sumit Parikh, & Phil Yeske. The following centers and leaders were selected to participate: ### Mitochondrial Medicine Centers: - Akron Children’s Hospital, Bruce Cohen - Boston Children’s Hospital, Irina Anselm - Children’s Hospital Colorado and University of Colorado, Austin Larson - Children’s Hospital of Philadelphia, Amy Goldstein - Children’s Hospital of Pittsburgh, Uta Lichter - Cleveland Clinic, Sumit Parikh - Columbia University Medical Center, Michio Hirano - Cooper University Hospital, Jaya Ganesh - George Washington University/Children’s National Health System, Andrea Gropman - Icahn School of Medicine at Mount Sinai, Pankaj Prasun & Brynn Webb - Johns Hopkins University and the Kennedy Krieger Institute, Hilary Vernon - Massachusetts General Hospital, Amel Karaa - Mayo Clinic, Ralitza Gavrilova - Seattle Children’s Hospital, Russell Saneto - Stanford University, Gregory Enns - University of California, San Diego, Richard Haas - University of California, San Francisco, Renata Gallagher - University of Maryland School of Medicine and Medical System, Carol Greene - University of Texas McGovern Medical School, Mary Kay Koenig ### Affiliate Sites: - Children’s Hospital Los Angeles, Alvaro Serrano - University of North Carolina School of Medicine Department of Pediatrics Division of Genetics and Metabolism, Muge Gucsavas-Calikoglu - Children’s Mercy Hospital, Jean-Baptiste Le Pichon ![](https://www.mitoaction.org/wp-content/uploads/2019/08/MCN-Logo-Blue-300-288x300.png) --- ### [MyMito App](https://www.mitoaction.org/mymito/) **Published:** September 24, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to MitoAction Programs](https://www.mitoaction.org/programs-support/mitoaction-programs/ "MitoAction Programs") # MyMito App Whether you need help managing your mitochondrial disease symptoms or if you care for someone with mitochondrial disease, MitoAction’s MyMito App is here for you. ![](https://www.mitoaction.org/wp-content/uploads/2024/10/Woman-Using-Cellphone-to-Manage-Mito-–-MyMito-App-–-MitoAction-1024x683.webp) Whether you need help managing your mitochondrial disease symptoms or if you care for someone with mitochondrial disease, MitoAction’s MyMito App is here for you. **Welcome to the first and only HIPAA compliant digital health platform (website and mobile app) specifically for managing life with mitochondrial disease.** MyMito App will help you manage mitochondrial disease each step of the way by: - track current mitochondrial disease symptoms and treatments to see what works and what doesn’t - access and view past health history on demand - manage future appointments and tasks, to avoid obstacles and triggers ## What You Get When You Join #### Journal Your **Mito** **Daily Journal** reminders to track your current mito symptoms, recommended by top thought leaders in mitochondrial disease research. These can be customized just for you and added as they happen in real-time. #### Community The **MitoAction Community** is a place for you to connect with other members of the mitochondrial disease community. #### Records Your **My** **Health Journal** to add all of your past and future health history files, like past lab results, so you can access them anytime, anywhere and share them with members of your care team. #### Charts Real-time charts so you know what is working and what isn’t. Share these charts with your doctors so they see your mito experience. #### Calendar A calendar to coordinate future activities, tasks, appointments, and medications so all care gets delivered, nothing falls through the cracks, and others can help you when needed. ## Using MyMito is Easy ![](https://www.mitoaction.org/wp-content/uploads/2022/12/MyMito-App-Screenshot-Step-1.png)#### **Step 1:** Login When you login, you will see your ***Mito Daily Journal*** (your space to capture all of your mito symptoms and events in one place). MyMito App will prompt you to post important mito symptoms, events, and measures each day. These can be customized just for you and added as they happen in real-time. ![](https://www.mitoaction.org/wp-content/uploads/2022/12/MyMito-App-Screenshot-Step-2.png)#### **Step 2:** See Your Trends Real-time charts help you identify trends so you can take action to live your best. ![](https://www.mitoaction.org/wp-content/uploads/2022/12/MyMito-App-Screenshot-Step-3.png)#### **Step 3:** Add Actions & Media Add appointments and care tasks (actions). You can add notes, audio and photos. ![](https://www.mitoaction.org/wp-content/uploads/2022/12/MyMito-App-Screenshot-Step-4.png)#### **Step 4:** Search & Filter Health Posts Your Mito Daily Journal posts can be searched and filtered to group common symptoms and events over time. ![](https://www.mitoaction.org/wp-content/uploads/2022/12/MyMito-App-Screenshot-Step-5.png)#### **Step 5:** Share with Others Grant (or revoke) access to family members and your care team to chat and share symptoms and events. ## Sign Up for Free! **You MUST sign up via the buttons below to access MyMito App for free!** 1. For the best experience, sign up using your computer or iPad/Android tablet (you can sign up using your mobile phone as well). 2. Once you see the “Mito Daily” screen below, tap “let’s go” to unlock your custom daily journal FREE. 3. Then check your email. A Welcome message has the link to activate your account. [MyMito App for Mito](https://www.mitoaction.org/mymito/mymito-app-signup/) [MyMito App for FAOD](https://www.mitoaction.org/mymito/mymito-app-signup-faod/) [MyMito App for TK2d](https://www.mitoaction.org/mymito/mymito-app-signup-tk2d/) View the [quick-start guides](https://www.mitoaction.org/quickstart-home/) to help you get the most out of MyMito App. ![](https://www.mitoaction.org/wp-content/uploads/2025/03/MyMito-App-Logo-—-MitoAction-1024x265.webp)### Sign Up for Free! [MyMito App for Mito](https://www.mitoaction.org/mymito/mymito-app-signup/) [MyMito App for FAOD](https://www.mitoaction.org/mymito/mymito-app-signup-faod/) [MyMito App for TK2d](https://www.mitoaction.org/mymito/mymito-app-signup-tk2d/) ### Quickstart Guides & Tutorials View the [quick-start guides](https://www.mitoaction.org/mymito/quickstart-home/ "MyMito App Quick-Start Guides & Tutorials") to help you get the most out of MyMito App. --- ### [MyMito App Quick-Start Guides & Tutorials](https://www.mitoaction.org/mymito/quickstart-home/) **Published:** April 3, 2020 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to MyMito App](https://www.mitoaction.org/planning-and-preparation/ "Back to Section") # MyMito App Quick-Start Guides & Tutorials Welcome to MyMito App! These quick-start guides will help you get the most out of the MyMito App experience and guide you step-by-step through the most commonly used features. ![](https://www.mitoaction.org/wp-content/uploads/2024/10/Woman-Using-Cellphone-to-Manage-Mito-–-MyMito-App-–-MitoAction-1024x683.webp) Welcome to MyMito App! These quick-start guides will help you get the most out of the MyMito App experience and guide you step-by-step through the most commonly used features. If you have any questions, or need help using MyMito App, don’t hesitate to reach out to us at . [![](https://www.mitoaction.org/wp-content/uploads/2025/01/MyMito-Quickstart-Guide.webp)](https://www.mitoaction.org/wp-content/uploads/2022/12/Get-Started-Your-Mito-Daily-Journal-—-Care3-_-Treat-Us-Right.pdf)**[Get Started! Your Mito Daily Journal](https://www.mitoaction.org/wp-content/uploads/2022/12/Get-Started-Your-Mito-Daily-Journal-—-Care3-_-Treat-Us-Right.pdf)** [![](https://www.mitoaction.org/wp-content/uploads/2025/01/MyMito-Quickstart-Guide.webp)](https://www.mitoaction.org/wp-content/uploads/2022/12/Add-Health-Files-to-Your-Daily-Journal-—-Care3-_-Treat-Us-Right.pdf)[**Add Health Files to Your Daily Journal**](https://www.mitoaction.org/wp-content/uploads/2022/12/Add-Health-Files-to-Your-Daily-Journal-—-Care3-_-Treat-Us-Right.pdf) [![](https://www.mitoaction.org/wp-content/uploads/2025/01/MyMito-Quickstart-Guide.webp)](https://www.mitoaction.org/wp-content/uploads/2022/12/Invite-Others-to-Your-Daily-Journal-—-Care3-_-Treat-Us-Right.pdf)[**Invite Others to Your Daily Journal**](https://www.mitoaction.org/wp-content/uploads/2022/12/Invite-Others-to-Your-Daily-Journal-—-Care3-_-Treat-Us-Right.pdf) [![](https://www.mitoaction.org/wp-content/uploads/2025/01/MyMito-Quickstart-Guide.webp)](https://www.mitoaction.org/wp-content/uploads/2022/12/Add-Media-to-Your-Daily-Journal-—-Care3-_-Treat-Us-Right.pdf)[**Add Media to Your Daily Journal**](https://www.mitoaction.org/wp-content/uploads/2022/12/Add-Media-to-Your-Daily-Journal-—-Care3-_-Treat-Us-Right.pdf) [![](https://www.mitoaction.org/wp-content/uploads/2025/01/MyMito-Quickstart-Guide.webp)](https://www.mitoaction.org/wp-content/uploads/2022/12/Track-Unexpected-Events-and-Symptoms-—-Care3-_-Treat-Us-Right.pdf)[**Track Unexpected Events and Symptoms**](https://www.mitoaction.org/wp-content/uploads/2022/12/Track-Unexpected-Events-and-Symptoms-—-Care3-_-Treat-Us-Right.pdf) [![](https://www.mitoaction.org/wp-content/uploads/2025/01/MyMito-Quickstart-Guide.webp)](https://www.mitoaction.org/wp-content/uploads/2022/12/Add-Appointments-to-your-HIPAA-compliant-in-app-Calendar-—-Care3-_-Treat-Us-Right.pdf)[**Add Appointments to Your HIPAA compliant In-App Calendar**](https://www.mitoaction.org/wp-content/uploads/2022/12/Add-Appointments-to-your-HIPAA-compliant-in-app-Calendar-—-Care3-_-Treat-Us-Right.pdf) [![](https://www.mitoaction.org/wp-content/uploads/2025/01/MyMito-Quickstart-Guide.webp)](https://www.mitoaction.org/wp-content/uploads/2022/12/Start-a-New-Text-Messaging-Conversation-with-Family-or-Doctors-—-Care3-_-Treat-Us-Right.pdf)[**Start a New Text Messaging Conversation with Family or Doctors**](https://www.mitoaction.org/wp-content/uploads/2022/12/Start-a-New-Text-Messaging-Conversation-with-Family-or-Doctors-—-Care3-_-Treat-Us-Right.pdf) --- ### [MyMito App Signup - Mito Community](https://www.mitoaction.org/mymito/mymito-app-signup/) **Published:** September 25, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") "\*" indicates required fields URL This field is for validation purposes and should be left unchanged. Name\* First Last Email\* Phone Address Street Address City State / Province / Region ZIP / Postal Code AfghanistanÅland IslandsAlbaniaAlgeriaAmerican SamoaAndorraAngolaAnguillaAntarcticaAntigua and BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBoliviaBonaire, Sint Eustatius and SabaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBritish Indian Ocean TerritoryBrunei DarussalamBulgariaBurkina FasoBurundiCabo VerdeCambodiaCameroonCanadaCayman IslandsCentral African RepublicChadChileChinaChristmas IslandCocos IslandsColombiaComorosCongoCongo, Democratic Republic of theCook IslandsCosta RicaCôte d'IvoireCroatiaCubaCuraçaoCyprusCzechiaDenmarkDjiboutiDominicaDominican RepublicEcuadorEgyptEl SalvadorEquatorial GuineaEritreaEstoniaEswatiniEthiopiaFalkland IslandsFaroe IslandsFijiFinlandFranceFrench GuianaFrench PolynesiaFrench Southern TerritoriesGabonGambiaGeorgiaGermanyGhanaGibraltarGreeceGreenlandGrenadaGuadeloupeGuamGuatemalaGuernseyGuineaGuinea-BissauGuyanaHaitiHeard Island and McDonald IslandsHoly SeeHondurasHong KongHungaryIcelandIndiaIndonesiaIranIraqIrelandIsle of ManIsraelItalyJamaicaJapanJerseyJordanKazakhstanKenyaKiribatiKorea, Democratic People's Republic ofKorea, Republic ofKuwaitKyrgyzstanLao People's Democratic RepublicLatviaLebanonLesothoLiberiaLibyaLiechtensteinLithuaniaLuxembourgMacaoMadagascarMalawiMalaysiaMaldivesMaliMaltaMarshall IslandsMartiniqueMauritaniaMauritiusMayotteMexicoMicronesiaMoldovaMonacoMongoliaMontenegroMontserratMoroccoMozambiqueMyanmarNamibiaNauruNepalNetherlandsNew CaledoniaNew ZealandNicaraguaNigerNigeriaNiueNorfolk IslandNorth MacedoniaNorthern Mariana IslandsNorwayOmanPakistanPalauPalestine, State ofPanamaPapua New GuineaParaguayPeruPhilippinesPitcairnPolandPortugalPuerto RicoQatarRéunionRomaniaRussian FederationRwandaSaint BarthélemySaint Helena, Ascension and Tristan da CunhaSaint Kitts and NevisSaint LuciaSaint MartinSaint Pierre and MiquelonSaint Vincent and the GrenadinesSamoaSan MarinoSao Tome and PrincipeSaudi ArabiaSenegalSerbiaSeychellesSierra LeoneSingaporeSint MaartenSlovakiaSloveniaSolomon IslandsSomaliaSouth AfricaSouth Georgia and the South Sandwich IslandsSouth SudanSpainSri LankaSudanSurinameSvalbard and Jan MayenSwedenSwitzerlandSyria Arab RepublicTaiwanTajikistanTanzania, the United Republic ofThailandTimor-LesteTogoTokelauTongaTrinidad and TobagoTunisiaTürkiyeTurkmenistanTurks and Caicos IslandsTuvaluUgandaUkraineUnited Arab EmiratesUnited KingdomUnited StatesUruguayUS Minor Outlying IslandsUzbekistanVanuatuVenezuelaViet NamVirgin Islands, BritishVirgin Islands, U.S.Wallis and FutunaWestern SaharaYemenZambiaZimbabwe Country EthnicityCaucasianAfrican AmericanLatino or HispanicAsianSoutheast AsianNative AmericanNative Hawaiian or Pacific IslanderTwo or MoreOther/UnknownPrefer not to state Primary LanguageArabicEnglishSpanishBengaliBhojpuriChinese- MandarinChinese – Wu or ShanghaineseChinese – Yue or CantoneseFrenchGermanGujaratiHausaHindiIgboItalianJapaneseKoreanMarathiPersian IranianPortuguesePunjabiRussianTagalogTamilTeluguTurkishUkrainianUrduVietnameseOther Genderman/boywoman/girltransgendernon-binaryagendergender non-conforminggender fluidgenderqueertwo spiritothernone of theseprefer not to state Pronounhe/him/hisshe/her/hersthey/them/theirve/ver/visxe/xem/xyrze/zie What is your connection to mito?\* Patient Parent Spouse Caregiver Son Daughter Sibling Grandparent Grandchild Aunt Uncle Cousin Niece Nephew Friend Teacher/Educator Medical Professional Physician Nurse Genetic Counselor Social Worker Researcher Industry Rep Other Diagnosis TypeGenetically ConfirmedClinical DiagnosisUndiagnosed What is your diagnosis?\* Alpers’ Disease ACAD9 Deficiency Autosomal Dominante Optic Atrophy (ADOA) Barth Syndrome CACT Deficiency CPEO Complex I Deficiency Complex II Deficiency Complex III Deficiency Complex IV Deficiency Complex V Deficiency CoQ10 Deficiency CPT I Deficiency CPT II Deficiency Creatine Deficiency Syndrome CUD/Primary Carnitine Deficiency Friedreich’s Ataxia GAII/MADD Deficiency Kearns-Sayre Syndrome (KSS) Lactic Acidosis LCHAD Deficiency Leigh Syndrome Leukodystrophy LHON LHON Plus Luft Disease MCAD Deficiency MCKAT Deficiency MELAS MEPAN MERRF MIRAS Mitochondrial Cytophy Mitochondrial DNA Depletion Mitochondrial Encencephalopathy Mitochondrial Myopathy MNGIE M/SCHAD Deficiency MMDS NARP Pearson Syndrome POLG Mutations POLG 2 Primary Mitochondrial Myopathy Pyruvate Carboxylase Deficiency Pyruvate Dehydrogenase Deficiency PDCD SCAD Deficiency Thymidine Kinase 2 Deficiency (TK2) VLCAD Deficiency Undiagnosed Other What is your child's diagnosis?\* Alpers’ Disease ACAD9 Deficiency Autosomal Dominante Optic Atrophy (ADOA) Barth Syndrome CACT Deficiency CPEO Complex I Deficiency Complex II Deficiency Complex III Deficiency Complex IV Deficiency Complex V Deficiency CoQ10 Deficiency CPT I Deficiency CPT II Deficiency Creatine Deficiency Syndrome CUD/Primary Carnitine Deficiency Friedreich’s Ataxia GAII/MADD Deficiency Kearns-Sayre Syndrome (KSS) Lactic Acidosis LCHAD Deficiency Leigh Syndrome Leukodystrophy LHON LHON Plus Luft Disease MCAD Deficiency MCKAT Deficiency MELAS MEPAN MERRF MIRAS Mitochondrial Cytophy Mitochondrial DNA Depletion Mitochondrial Encencephalopathy Mitochondrial Myopathy MNGIE M/SCHAD Deficiency Multiple Mitochondrial Dysfunction Syndrome NARP Pearson Syndrome POLG Mutations POLG 2 Primary Mitochondrial Myopathy Pyruvate Carboxylase Deficiency Pyruvate Dehydrogenase Deficiency Pyruvate Dhydrogenase Complex Deficiency (PDCD) SCAD Deficiency Thymidine Kinase 2 Deficiency (TK2) VLCAD Deficiency Undiagnosed Other What is your loved one's diagnosis?\* Alpers’ Disease ACAD9 Deficiency Autosomal Dominante Optic Atrophy (ADOA) Barth Syndrome CACT Deficiency CPEO Complex I Deficiency Complex II Deficiency Complex III Deficiency Complex IV Deficiency Complex V Deficiency CoQ10 Deficiency CPT I Deficiency CPT II Deficiency Creatine Deficiency Syndrome CUD/Primary Carnitine Deficiency Friedreich’s Ataxia GAII/MADD Deficiency Kearns-Sayre Syndrome (KSS) Lactic Acidosis LCHAD Deficiency Leigh Syndrome Leukodystrophy LHON LHON Plus Luft Disease MCAD Deficiency MCKAT Deficiency MELAS MEPAN MERRF MIRAS Mitochondrial Cytophy Mitochondrial DNA Depletion Mitochondrial Encencephalopathy Mitochondrial Myopathy MNGIE M/SCHAD Deficiency Multiple Mitochondrial Dysfunction Syndrome NARP Pearson Syndrome POLG Mutations POLG 2 Primary Mitochondrial Myopathy Pyruvate Carboxylase Deficiency Pyruvate Dehydrogenase Deficiency Pyruvate Dhydrogenase Complex Deficiency (PDCD) SCAD Deficiency Thymidine Kinase 2 Deficiency (TK2) VLCAD Deficiency Undiagnosed Other To signup for one-on-one support for MyMito visit: [MyMitoHelp](https://https://calendly.com/mitoaction/30min/). I would like to signup to receive the MitoAction Newsletter Yes, add me to the Newsletter list CAPTCHA Submit --- ### [MyMito App Signup - TK2D Community](https://www.mitoaction.org/mymito/mymito-app-signup-tk2d/) **Published:** January 10, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The MyMito App for TK2d is going live! Please fill out this form if you are interested in downloading this version of the app. You will receive an invitation link to download the platform. If you have questions about the app, please contact emily@mitoaction.org. "\*" indicates required fields Phone This field is for validation purposes and should be left unchanged. Name\* First Last Email\* Phone\* Address\* Street Address City State / Province / Region ZIP / Postal Code AfghanistanÅland IslandsAlbaniaAlgeriaAmerican SamoaAndorraAngolaAnguillaAntarcticaAntigua and BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBoliviaBonaire, Sint Eustatius and SabaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBritish Indian Ocean TerritoryBrunei DarussalamBulgariaBurkina FasoBurundiCabo VerdeCambodiaCameroonCanadaCayman IslandsCentral African RepublicChadChileChinaChristmas IslandCocos IslandsColombiaComorosCongoCongo, Democratic Republic of theCook IslandsCosta RicaCôte d'IvoireCroatiaCubaCuraçaoCyprusCzechiaDenmarkDjiboutiDominicaDominican RepublicEcuadorEgyptEl SalvadorEquatorial GuineaEritreaEstoniaEswatiniEthiopiaFalkland IslandsFaroe IslandsFijiFinlandFranceFrench GuianaFrench PolynesiaFrench Southern TerritoriesGabonGambiaGeorgiaGermanyGhanaGibraltarGreeceGreenlandGrenadaGuadeloupeGuamGuatemalaGuernseyGuineaGuinea-BissauGuyanaHaitiHeard Island and McDonald IslandsHoly SeeHondurasHong KongHungaryIcelandIndiaIndonesiaIranIraqIrelandIsle of ManIsraelItalyJamaicaJapanJerseyJordanKazakhstanKenyaKiribatiKorea, Democratic People's Republic ofKorea, Republic ofKuwaitKyrgyzstanLao People's Democratic RepublicLatviaLebanonLesothoLiberiaLibyaLiechtensteinLithuaniaLuxembourgMacaoMadagascarMalawiMalaysiaMaldivesMaliMaltaMarshall IslandsMartiniqueMauritaniaMauritiusMayotteMexicoMicronesiaMoldovaMonacoMongoliaMontenegroMontserratMoroccoMozambiqueMyanmarNamibiaNauruNepalNetherlandsNew CaledoniaNew ZealandNicaraguaNigerNigeriaNiueNorfolk IslandNorth MacedoniaNorthern Mariana IslandsNorwayOmanPakistanPalauPalestine, State ofPanamaPapua New GuineaParaguayPeruPhilippinesPitcairnPolandPortugalPuerto RicoQatarRéunionRomaniaRussian FederationRwandaSaint BarthélemySaint Helena, Ascension and Tristan da CunhaSaint Kitts and NevisSaint LuciaSaint MartinSaint Pierre and MiquelonSaint Vincent and the GrenadinesSamoaSan MarinoSao Tome and PrincipeSaudi ArabiaSenegalSerbiaSeychellesSierra LeoneSingaporeSint MaartenSlovakiaSloveniaSolomon IslandsSomaliaSouth AfricaSouth Georgia and the South Sandwich IslandsSouth SudanSpainSri LankaSudanSurinameSvalbard and Jan MayenSwedenSwitzerlandSyria Arab RepublicTaiwanTajikistanTanzania, the United Republic ofThailandTimor-LesteTogoTokelauTongaTrinidad and TobagoTunisiaTürkiyeTurkmenistanTurks and Caicos IslandsTuvaluUgandaUkraineUnited Arab EmiratesUnited KingdomUnited StatesUruguayUS Minor Outlying IslandsUzbekistanVanuatuVenezuelaViet NamVirgin Islands, BritishVirgin Islands, U.S.Wallis and FutunaWestern SaharaYemenZambiaZimbabwe Country Ethnicity\*CaucasianAfrican AmericanLatino or HispanicAsianSoutheast AsianNative AmericanNative Hawaiian or Pacific IslanderTwo or MoreOther/UnknownPrefer not to state Primary Language\*ArabicEnglishSpanishBengaliBhojpuriChinese- MandarinChinese – Wu or ShanghaineseChinese – Yue or CantoneseFrenchGermanGujaratiHausaHindiIgboItalianJapaneseKoreanMarathiPersian IranianPortuguesePunjabiRussianTagalogTamilTeluguTurkishUkrainianUrduVietnameseOther Gender\*man/boywoman/girltransgendernon-binaryagendergender non-conforminggender fluidgenderqueertwo spiritothernone of theseprefer not to state Pronounhe/him/hisshe/her/hersthey/them/theirve/ver/visxe/xem/xyrze/zie What is your connection to TK2d?\* Patient Parent Spouse Caregiver Son Daughter Sibling Grandparent Grandchild Aunt Uncle Cousin Niece Nephew Friend Teacher/Educator Medical Professional Physician Nurse Genetic Counselor Social Worker Researcher Industry Rep Other By checking the box below, you will receive an emailed invitation to download the MyMito App (TK2d Version) when it goes live. Yes, I would like to receive an emailed invitation To signup for one-on-one support for MyMito visit: [MyMitoHelp](https://https://calendly.com/mitoaction/30min/). I would like to signup to receive the MitoAction Newsletter Yes, add me to the Newsletter list CAPTCHA Submit --- ### [MyMito App Signup - FAOD Community](https://www.mitoaction.org/mymito/mymito-app-signup-faod/) **Published:** October 7, 2020 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") "\*" indicates required fields Email This field is for validation purposes and should be left unchanged. Name\* First Last Email\* Phone EthnicityCaucasianAfrican AmericanLatino or HispanicAsianSoutheast AsianNative AmericanNative Hawaiian or Pacific IslanderTwo or MoreOther/UnknownPrefer not to state Primary LanguageArabicEnglishSpanishBengaliBhojpuriChinese- MandarinChinese – Wu or ShanghaineseChinese – Yue or CantoneseFrenchGermanGujaratiHausaHindiIgboItalianJapaneseKoreanMarathiPersian IranianPortuguesePunjabiRussianTagalogTamilTeluguTurkishUkrainianUrduVietnameseOther Genderman/boywoman/girltransgendernon-binaryagendergender non-conforminggender fluidgenderqueertwo spiritothernone of theseprefer not to state Pronounhe/him/hisshe/her/hersthey/them/theirve/ver/visxe/xem/xyrze/zie Address Street Address City State / Province / Region ZIP / Postal Code AfghanistanÅland IslandsAlbaniaAlgeriaAmerican SamoaAndorraAngolaAnguillaAntarcticaAntigua and BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBoliviaBonaire, Sint Eustatius and SabaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBritish Indian Ocean TerritoryBrunei DarussalamBulgariaBurkina FasoBurundiCabo VerdeCambodiaCameroonCanadaCayman IslandsCentral African RepublicChadChileChinaChristmas IslandCocos IslandsColombiaComorosCongoCongo, Democratic Republic of theCook IslandsCosta RicaCôte d'IvoireCroatiaCubaCuraçaoCyprusCzechiaDenmarkDjiboutiDominicaDominican RepublicEcuadorEgyptEl SalvadorEquatorial GuineaEritreaEstoniaEswatiniEthiopiaFalkland IslandsFaroe IslandsFijiFinlandFranceFrench GuianaFrench PolynesiaFrench Southern TerritoriesGabonGambiaGeorgiaGermanyGhanaGibraltarGreeceGreenlandGrenadaGuadeloupeGuamGuatemalaGuernseyGuineaGuinea-BissauGuyanaHaitiHeard Island and McDonald IslandsHoly SeeHondurasHong KongHungaryIcelandIndiaIndonesiaIranIraqIrelandIsle of ManIsraelItalyJamaicaJapanJerseyJordanKazakhstanKenyaKiribatiKorea, Democratic People's Republic ofKorea, Republic ofKuwaitKyrgyzstanLao People's Democratic RepublicLatviaLebanonLesothoLiberiaLibyaLiechtensteinLithuaniaLuxembourgMacaoMadagascarMalawiMalaysiaMaldivesMaliMaltaMarshall IslandsMartiniqueMauritaniaMauritiusMayotteMexicoMicronesiaMoldovaMonacoMongoliaMontenegroMontserratMoroccoMozambiqueMyanmarNamibiaNauruNepalNetherlandsNew CaledoniaNew ZealandNicaraguaNigerNigeriaNiueNorfolk IslandNorth MacedoniaNorthern Mariana IslandsNorwayOmanPakistanPalauPalestine, State ofPanamaPapua New GuineaParaguayPeruPhilippinesPitcairnPolandPortugalPuerto RicoQatarRéunionRomaniaRussian FederationRwandaSaint BarthélemySaint Helena, Ascension and Tristan da CunhaSaint Kitts and NevisSaint LuciaSaint MartinSaint Pierre and MiquelonSaint Vincent and the GrenadinesSamoaSan MarinoSao Tome and PrincipeSaudi ArabiaSenegalSerbiaSeychellesSierra LeoneSingaporeSint MaartenSlovakiaSloveniaSolomon IslandsSomaliaSouth AfricaSouth Georgia and the South Sandwich IslandsSouth SudanSpainSri LankaSudanSurinameSvalbard and Jan MayenSwedenSwitzerlandSyria Arab RepublicTaiwanTajikistanTanzania, the United Republic ofThailandTimor-LesteTogoTokelauTongaTrinidad and TobagoTunisiaTürkiyeTurkmenistanTurks and Caicos IslandsTuvaluUgandaUkraineUnited Arab EmiratesUnited KingdomUnited StatesUruguayUS Minor Outlying IslandsUzbekistanVanuatuVenezuelaViet NamVirgin Islands, BritishVirgin Islands, U.S.Wallis and FutunaWestern SaharaYemenZambiaZimbabwe Country What is your connection to FAOD?\* Patient Parent Spouse Caregiver Son Daughter Sibling Grandparent Grandchild Aunt Uncle Cousin Niece Nephew Friend Teacher/Educator Medical Professional Physician Nurse Genetic Counselor Social Worker Researcher Industry Rep Other Diagnosis TypeGenetically ConfirmedClinical DiagnosisUndiagnosed What is your diagnosis?\* ACAD9 Deficiency CACT Deficiency CPT I Deficiency CPT II Deficiency CUD/Primary Carnitine Deficiency GAII/MADD Deficiency LCHAD Deficiency MCAD Deficiency MCKAT Deficiency M/SCHAD Deficiency SCAD Deficiency TFP VLCAD Deficiency Undiagnosed Other What is your child's diagnosis?\* ACAD9 Deficiency CACT Deficiency CPT I Deficiency CPT II Deficiency CUD/Primary Carnitine Deficiency GAII/MADD Deficiency LCHAD Deficiency MCAD Deficiency MCKAT Deficiency M/SCHAD Deficiency SCAD Deficiency TFP VLCAD Deficiency Undiagnosed Other What is your loved one's diagnosis?\* ACAD9 Deficiency CACT Deficiency CPT I Deficiency CPT II Deficiency CUD/Primary Carnitine Deficiency GAII/MADD Deficiency LCHAD Deficiency MCAD Deficiency MCKAT Deficiency M/SCHAD Deficiency SCAD Deficiency TFP VLCAD Deficiency Undiagnosed Other To signup for one-on-one support for MyMito visit: [MyMitoHelp](https://https://calendly.com/mitoaction/30min/). Would you like to sign up for our mailing list?\*Mito NewslettersFAOD NewslettersBoth Mito & FAOD Newsletters CAPTCHA Submit --- ### [Insurance Appeals for Compounded Medication Coverage](https://www.mitoaction.org/planning-and-preparation/insurance-appeals/) **Published:** October 24, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Planning & Preparation](https://www.mitoaction.org/planning-and-preparation/ "Planning & Preparation") # Insurance Appeals for Compounded Medication Coverage Patients and Physicians for Rx Access is a Coalition consisting of individual patients, patient advocacy groups, pharmacists, physicians, pharmacies and healthcare organizations working together to raise awareness about cuts in compounded medication benefits. ![](https://www.mitoaction.org/wp-content/uploads/2025/03/Compounding-Pharmacist-Making-Capsules-—-MitoAction-1024x683.webp) *Produced Through a Joint Effort Between MitoAction and Patients and Physicians for Rx Access* ### Tips to Appeal the Denial of Coverage for your Compounded Medication Have you received a denial letter for your compounded medications? If your compounded medication coverage has been cut by your Pharmacy Benefit Manager (PBM) or insurance company, you may appeal the decision. Don’t wait, start the appeal process today! Patients and Physicians for Rx Access is a Coalition consisting of individual patients, patient advocacy groups, pharmacists, physicians, pharmacies and healthcare organizations working together to raise awareness about cuts in compounded medication benefits. MitoAction and Patients and Physicians for Rx Access have prepared various tips below that may help you navigate the appeals process for yourself or a family member. In reviewing the below tips, there are important things that you should keep in mind: - PBM and insurance company policies vary widely, so we suggest you check with your PBM or insurance company directly to verify their process for completing an appeal. - The compounded benefit being denied to you was in all likelihood a decision made by the PBM or insurance company and not your employer. These decisions can sometimes be reversed by your employer for an individual and even for an entire group. Before you start the appeal process, familiarize yourself with the important terms below: **Appeal:** A formal request made by a patient or the patient’s representative to a PBM or insurance company to change a decision regarding the patient’s health benefits. **Benefits Manager:** This person is responsible for administering and managing employee benefits for a workplace and normally works in a company’s Human Resource Department. This person may be able to instruct a PBM to allow for compounded medications. **Case Manager:** An insurance company employee typically assigned to complex patients to assist them in navigating their insurance benefits. **Pharmacy Benefit Manager (PBM):** A third-party administrator of prescription drug coverage, primarily responsible for processing and paying prescription drug claims. A PBM takes direction from the benefits manager or insurance plan regarding the management of that plan’s pharmacy benefit. **Prescriber:** The person who wrote the prescription. This may be a physician, nurse practitioner, dentist or other individual with prescribing authority. **Formulary:** A list of approved ingredients that a compounding pharmacist combines to create a compounded medication. Some tips to assist you in the appeals process are set forth below: **Tip One:** **Secure a denial letter in writing.** If you received a letter or other notice regarding the denial of compounded medication benefits, thoroughly read that letter or notice. It may set forth the process and/or documentation required for an appeal. If an appeal process and/or required documentation are listed, take time to carefully collect all information necessary for the PBM or insurance company to process your appeal. **Tip Two:** **Consult with your pharmacist.** Ask that your pharmacist assist you in the appeals process. Your pharmacist can provide you information regarding the ingredients in your compounded medication prescription, which is normally necessary for an appeal. Your pharmacist might also have suggestions as to different clinically appropriate formulas that may be covered by your insurance plan. **Tip Three:** If your insurance is through your employer (or that of your spouse or parent), **consult with the employer’s benefits manager**. Ask the benefits manager to assist you in determining the reason for the denial and whether that denial is appropriate under the insurance policy provided by the employer. The benefits manager may need to consult with your pharmacist regarding the prescription and the denial of coverage. The benefits manager should assist you with the appeals process or advise you on how to contact an insurance company case manager who could assist. You may also ask the benefits manager to “turn back on” compounded medication coverage for all employees or just the individual that needs compounded medication coverage. In many cases, the benefits manager can call the PBM or insurance company to reinstate compounded medication coverage for the individual needing coverage. **Tip Four: Contact your PBM or insurance company.** This may be done by you, your benefits manager at work, your prescriber and/or your pharmacist. During this call, you should ask for a coverage determination or exception. You may also want to ask if your insurance company can assign you a case manager to assist you through the appeal process. The phone number for the PBM or insurance company should be listed on the denial letter. If a number is not listed on the denial letter, check the back of your prescription drug or insurance card for a telephone number. Your benefits manager at work may also have a contact number. **Tip Five: Prepare before calling your PBM or insurance company.** As mentioned above, collect any required information *before* you call your PBM or insurance company. Also, if you decide to call your PBM or insurance company, make sure to know what you want to say before you pick up the phone. The script below may help you navigate your call. ***Hi, my name is \[NAME\] and I’ve recently received a letter informing me that my prescription drug coverage will no longer cover \[INSERT DETAILS OF YOUR PRESCRIPTION\]. Compounded medications are essential to my health because \[INSERT DETAILS OF YOUR SITUATION\].*** *The denial of coverage for a medication prescribed by my doctor is dangerous to my health. What steps do I need to take to receive coverage for this medication?* **Tip Six:** **Keep a log.** If you decide to appeal the denial of compounded medication benefits, keep a log of all contact and correspondence with your PBM and/or insurance company. Write down relevant details, such as: - The times and dates you mailed the appeal letter(s) or placed phone calls to your PBM or insurance company - The instructions or recommendations made by the PBM or insurance company - The names and titles of individuals with whom you communicate by phone or mail **Tip Seven:** **Involve your prescriber or physician.** Your PBM or insurance plan may have a Clinical Appeals Process, wherein your prescriber or physician may request reconsideration of the denial of formulary coverage. Clinical appeal requests may be made by the prescriber or physician to the PBM or insurance company by telephone or in writing. As discussed above, specific rules regarding appeals vary between PBMs and insurance companies. Written requests are often preferred and generally include the following: - Reference number from the denial letter - Patient’s full name - Clear description of the prescribed compounded medication for which coverage was denied - Additional information that may have a bearing on the decision, such as: - The patient’s diagnosis and relevant history - Relevant portions of the patient’s chart - The reason(s) a compounded medication is necessary over a commercially available medication *In many cases, the patient should assist the prescriber in compiling this information.* **Tip Eight:** **Determine whether or not to submit a written appeal, which is sometimes called a “formal appeal” by PBMs and insurance companies.** Written appeals often include: - Reference number from the denial letter - The insurance policy number, beneficiary identification numbers and other identifying information - Patient’s full name - Reason for the appeal, including a clear description of the prescribed compounded medication for which coverage was denied - Any evidence you may wish to attach in support of your appeal, including a letter from your prescriber or physician to your PBM or insurance company explaining why you need the compounded medication **Tip Nine:** **Follow any instructions from your PBM or insurance company for submitting an appeal.** Instructions may include using an online form instead of a paper form, or submitting the written appeal to the attention of a specific individual or department. **Tip Ten:** **Submit appeals in a timely fashion.** Many PBMs and insurance companies require that appeals be submitted within a short time following the coverage determination or denial letter date. **Tip Eleven:** **Look for correspondence from your PBM or insurance company.** If coverage for your compounded medication is still not approved, the PBM or insurance company’s notice should explain why your appeal was denied and additional steps you may take. Sometimes, a process is available for an independent review of a denied appeal. Also, ask your benefits manager or other benefits provider regarding additional steps that you may take, such as providing medical literature to support the use of compounded medications to treat your condition or symptoms. Beneficiaries under many insurance plans are granted independent appeal and review rights under the Federal Patient Protection and Affordable Care Act. You may learn more about this process [here](https://www.hhs.gov/healthcare/about-the-law/cancellations-and-appeals/appealing-health-plan-decisions/index.html). **Tip Twelve:** **Be an advocate for yourself and your loved ones.** If your insurance is provided through an employer, ask the benefits manager to consider insurance plans that include coverage for compounded medications at the policy renewal date. If you carry individual insurance, research plans that include compounded medication coverage and be ready to switch plans at the beginning of the next benefit year. --- ### [Mito Cocktail](https://www.mitoaction.org/landers/mito-cocktail/) **Published:** February 6, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A Mito Cocktail (also known as a Mitochondrial Cocktail or Mitochondrial Disease Cocktail) is a variety of vitamins and supplements which are commonly used by adults and children who have been diagnosed with mitochondrial disease. While there is no cure for mitochondrial disease, many types of the disease including [mitochondrial myopathy](https://www.mitoaction.org/conditions/mitochondrial-myopathy/), mitochondrial cytopathy, [MELAS](https://www.mitoaction.org/conditions/melas-mitochondrial-myopathy-encephalopathy-lactic-acidosis-and-stroke-like-episodes/), PDCD, or Complex I, II, III, and IV are responsive to specific vitamin and supplement therapies. **Consult with your physician before beginning or altering any medication, vitamin or supplement regimen.** To find a doctor who specializes in the treatment of mitochondrial diseases, [click here](https://www.mitoaction.org/mitochondrial-disease/doctors/ "Mitochondrial Disease Doctors"). ## A Mito Cocktail is Often Compounded The supplements and vitamins used by Mito patients are often high doses and could require a patient to take up to 50 different pills per day. A compounding pharmacist can create a “cocktail” in a liquid, capsule or other form that combines the pure powdered form of the prescribed supplements and vitamins. This allows the final medication to be taken in much smaller amounts than if taken individually, and can even be flavored to improve palatability. By avoiding fillers common in over the counter tablets, an individual’s allergy or dietary restrictions can be accommodated. The exact compound—including dosage and ingredients—is determined by the patient’s physician and differs depending on an individual Mito patient’s diagnosis, clinical symptoms, weight, and other factors. ![A Mito Cocktail (also known as a Mitochondrial Cocktail or Mitochondrial Disease Cocktail) can help mito patients control many symptoms of their disease.](https://www.mitoaction.org/wp-content/uploads/2024/07/Young-boy-and-his-mother-meeting-with-a-doctor-1024x683.webp) ## Most Common Ingredients of the Mito Cocktail A Mitochondrial Disease Cocktail is customized for an individual patient, based on diagnosis, symptoms and more. The following ingredients are commonly found in mito cocktails: #### Coenzyme Q-10 Coenzyme Q-10 (Coenzyme Q10, CoQ10, CoQ-10, CoQ, ubiquinone) is a fat-soluble, vitamin-like substance present in every cell of the body and serves as a coenzyme for several of the key enzymatic steps in the production of energy within the cell. It also functions as an antioxidant protecting against accumulation of harmful free radicals, which is important in its clinical effects. Many patients report increased energy while using Coenzyme Q-10, and thus it is a common “front-line” approach to supporting children and adults with mitochondrial disease. #### B-Vitamins Some B-vitamins are cofactors which participate in important mitochondrial reactions. Most of the B-vitamins have a bitter taste and more palatable if flavored. B-vitamins are water soluble; that is, they are excreted if not used, and the benefit from taking these vitamins should be felt immediately. - **Vitamin B1 (Thiamine)** This is a water soluble vitamin which helps break down carbohydrates so the body can better use them, helps with growth and maintenance of muscle tone, and aids memory. - **Vitamin B2 (Riboflavin**) Also a water soluble vitamin, B2 is necessary for energy production in the mitochondria and increases muscle performance as well as helping maintain healthy mucous membranes, skin, hair and nails. Given in the form of Riboflavin Biphosphate can improve the taste of this vitamin. - **Vitamin B3 (Niacin)** Occasionally used, B3 can often cause flushing of the face so it is generally given separately first to see if any side effects will occur before it is added to the cocktail. - **Vitamin B6 (Pyridoxine) and Vitamin B12 (Cobalamine)** These B-vitamins are frequently part of the compounded mix which Mito patients may use. #### Other Antioxidants Antioxidants are molecules that protect the body from damage caused by free radicals, unstable molecules that can lead to inflammation and disease. - **Alpha Lipoic Acid** Alpha-lipoic acid is a universal antioxidant. In addition, it can support the regeneration of other antioxidants, like glutathione, Vitamin C and Vitamin E. - **Vitamin C** Vitamin C is used for its help in the healing process and to ward off infections but can cause some stomach upset and occasionally headaches when the dose is increased. - **Vitamin E** Vitamin E protects cell membranes and improves neurological function. Usually the dose is no higher than 400-600 mg per day for an adult. - **Vitamin K1** Vitamin K1 must be prescribed by a physician and used with caution, as there is a very small safe range for the dosage of this vitamin. - **L-Carnitine** Also prescribed by a physician, L-Carnitine helps transport fatty acids and improve the strength and tone of muscles. Some patients report decreased fatigue and energy improvements by taking L-Carnitine. It is taken in either tablet or liquid form and is usually taken separate from the compounded cocktail. - **Creatine** Creatine helps maintain muscle mass and increases energy for cells. All of the vitamins and supplements noted above are added or not added to a cocktail as specified by a patient’s need. Each cocktail is patient specific. **Please** **work with your doctor to determine the exact ingredients to be used in the compound that will be most beneficial for you.** ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Doctor-filling-out-questionaire-1024x683.jpg)## Find a Mito Doctor To make it easier for mito patients to find a doctor who specializes in Mito, MitoAction maintain a list of experts who treat and research mitochondrial diseases. [Click here to find a Doctor near you or one who sees patients nationwide via telehealth](https://www.mitoaction.org/mitochondrial-disease/doctors/ "Mitochondrial Disease Doctors"). --- ### [Marcel's Way](https://www.mitoaction.org/programs-support/mitoaction-programs/marcelsway/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [MitoAction Programs](https://www.mitoaction.org/programs-support/mitoaction-programs/ "MitoAction Programs") # Marcel’s Way The Marcel’s Way Family Fund is a program that offers a helping hand in the way of direct financial support to those suffering from mitochondrial disease. ![](https://www.mitoaction.org/wp-content/uploads/2024/08/MitoAction-—-Marcels-Way-—-Hands-holding-donation-jar-966x1024.webp) Marcel’s Way was founded in 2003 by a group of “Mito Mothers” who came together because they saw that families needed information, education, and support to live as normal a life as possible with their newly diagnosed children suffering from mitochondrial disorders. In 2005, Marcel’s Way launched the Marcel’s Way Family Fund to help families cover the extra expenses they faced to care for their children. Grants were made to assist with the high cost of medications, services, and medical equipment. In 2011, MitoAction agreed to carry on the legacy of the Marcel’s Way Family Fund by offering a grants-based family assistance program. #### Why is a Family-Assistance Program Important for Someone Diagnosed with Mito? Due to the complexity of the disease, no standards of care exist today for children and adults who have mitochondrial disease. As a result, many things (wheelchairs, medicines, diagnostic tests, etc.) that would be 100% covered by insurance or other resource programs for other diseases are not always covered for our mito families. It is MitoAction’s vision that this program fund will grow so that we can offer support to every family with mitochondrial disease who ever faces an overwhelming need, thus making one part of their difficult journey a little easier. ![](https://www.mitoaction.org/wp-content/uploads/2023/01/Marcels-Way-Family-Fund-Logo-1024x404.png)[Apply Now](#apply-now) ## How to Apply for a Grant from the Marcel’s Way Family Fund **AWARDS:** Grants will be no more than $500 and will be awarded, based on need, to families who are struggling financially with costs associated with mitochondrial disease. Grants are awarded once per lifetime, per patient. **ELIGIBILITY:** Patients and families of patients living within the United States with a mitochondrial disorder will be eligible to apply for grants. There is no income eligibility to apply. **ELIGIBLE COSTS:** Expenses that “promote health” or “provide relief” could include: - Medical costs not covered by insurance; - Housing costs for families while patients are receiving treatment away from home; - Costs for special equipment, services, or supplies; - Costs of modifying a home, vehicle, or workspace; or - Costs of respite care or suitable recreational activities. **To apply for a grant from the Marcel’s Way Family Fund, submit the Application below.** *As part of the Application, we require two letters be submitted to MitoAction on your behalf describing the Beneficiary’s condition and confirming the usefulness of the funds requested. One letter must come from the Beneficiary’s Doctor and one letter from a Community Worker (Social Worker, Case Manager, Clergy Member, etc.). After you submit the Application below, you will receive an email with cover letters for you to submit to your Doctor and Community Worker in order to instruct them on what we require and how they can submit the information.* ## Apply Now Sorry, applications for Marcel’s Way are currently closed. Please check back later or follow us on social media for more information. --- ### [Mitochondrial Disease Symptoms](https://www.mitoaction.org/landers/mitochondrial-disease-symptoms/) **Published:** January 22, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Mitochondrial diseases are a varied group of disorders characterized by impaired energy production. The symptoms of mitochondrial disease can arise in any organ at any age. Some symptoms are hallmarks of mitochondrial disease and are called “red flag” symptoms. ![](https://www.mitoaction.org/wp-content/uploads/2024/07/Young-boy-and-his-mother-meeting-with-a-doctor-1024x683.webp)### Neurologic - Cerebral stroke-like lesions in a nonvascular pattern (brain lesions that do not appear like a regular stroke on imaging) - Basal ganglia disease (physical dysfunction, such as would occur with Parkinson’s disease) - Encephalopathy (brain disease) - Neurodegeneration (the progressive loss of structure or function of neurons, including death of neurons) - Epilepsia partialis continua (recurrent epileptic seizures that affect specific areas and recur every few seconds or minutes for extended periods) - Myoclonus (jerky contraction of groups of muscles) - Ataxia (loss of control of body movements) - MRI findings consistent with Leigh disease (in basal ganglia or brain stem) - Characteristic magnetic resonance spectrometry (MRS) peaks ### Cardiovascular - Hypertrophic cardiomyopathy with rhythm disturbance (thick heart muscle that can lead to irregular heartbeat) - Unexplained heart block in a child - Cardiomyopathy with lactic acidosis (build up of lactic acid in the body) - Dilated cardiomyopathy with muscle weakness - Wolff-Parkinson-White arrhythmia (a disorder of the heart’s electrical system that can cause fast heartbeat, palpitations, shortness of breath, and fainting) ![](https://www.mitoaction.org/wp-content/uploads/2025/01/Man-Visiting-the-Eye-Doctor-Ophthalmologist-—-MitoAction-1024x683.webp)### Ophthalmologic - Retinal (the back of the eye) degeneration with signs of night blindness, color-vision deficits, decreased visual acuity, or pigmentary retinopathy - Ophthalmoplegia paresis (weakness or paralysis of eye muscles) - Fluctuating, dysconjugate eye movements (eyes not moving together) - Ptosis (droopy upper eyelid) - Sudden or insidious-onset optic neuropathy/atrophy (damage to the optic nerve) ### Gastroenterological - Unexplained liver failure - Severe dysmotility (digestive tract muscles are impaired; food does not move through the system) - Pseudo-obstructive episodes (problem with gut motility that mimics an obstruction) ### Other - A newborn, infant, or young child with unexplained hypotonia (low muscle tone), weakness, failure to thrive, and a metabolic acidosis (particularly lactic acidosis) - Exercise intolerance that is not in proportion to weakness - Hypersensitivity to general anesthesia - Episodes of acute rhabdomyolysis (death of muscle fibers, which are then released into the blood stream) --- ### [Landers](https://www.mitoaction.org/landers/) **Published:** January 22, 2025 **Author:** Russell Weller --- ### [Energy Walk - Hartford, CT](https://www.mitoaction.org/events/energywalk/energy-walk-hartford-ct/) **Published:** February 23, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Energy Walks](https://www.mitoaction.org/events/energywalk/ "Energy Walk") # MitoAction Energy Walk — Hartford, CT Join us to help us to raise awareness and funds for mito—one step at a time! ![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-054-1024x808.jpg) ## Date & Location Coming Soon Join us on for the MitoAction Energy Walk in Hartford, CT! Whether you’re walking, running, or just joining for a day of fun, we can’t wait to see you all there! Hosted by the Vaculin family in honor of their cousins Andrew and Lance, Energy Walk Hartford promises to be a day of inspiration and hope as we gather to raise awareness and vital funds to support families affected by mitochondrial disease. Registration Coming Soon **Schedule of Events** Schedule coming soon ## 2024 Energy Walk Photos [![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-136-1024x764.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-136.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-125-1024x808.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-125.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-124-1024x718.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-124.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-123-1024x687.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-123.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-122-1024x766.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-122.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-120-679x1024.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-120.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-119-1024x863.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-119.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-116-1024x785.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-116.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-093-1024x815.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-093.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-078-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-078.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-069-1024x778.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-069.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-068-1024x1003.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-068.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-063-1024x681.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-063.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-055-721x1024.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-055.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-054-1024x808.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-054.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-047-903x1024.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-047.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-019-1024x745.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-019.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-018-1024x747.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-018.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-012-1024x683.jpg)](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Hartford-Energy-Walk-–-MitoAction-–-mitowalk-012.jpg) ### Meet the Collins Boys My cousin Andrew was a lively child who loved to roughhouse, laugh, and had a particular fondness for tractors. He was always eager to play with the older children in the neighborhood and his cousins, often until he was completely worn out. His infectious laughter was unique, sounding like a snake’s hiss. Andrew was born on August 19, 1996. His parents began to worry when he wasn’t meeting his developmental milestones. Then, one day, Andrew had his first seizure. Over the years, he underwent many tests without success, continuing to experience seizures. At five years old, a grand mal seizure required his admission into an epilepsy monitoring unit. Despite a long battle in the final weeks of his life, he tragically passed away peacefully at home, with his loving parents by his side. Although Andrew had passed, his parents later underwent a full battery of genetic tests in an attempt to understand their late son’s affliction. Unfortunately, their search did not provide any insight into the diagnosis. ![](https://www.mitoaction.org/wp-content/uploads/2024/03/andrew-1024x1024.png) ![](https://www.mitoaction.org/wp-content/uploads/2024/03/lance-1024x1024.png)On December 8, 2003, a second son, Lance, was born. Lance was a precious child who developed a fascination with trains as he grew. He had a ritual of lifting his feet when crossing train tracks, a habit that still comes to mind when I cross railroad tracks today. As Lance aged, he began to miss developmental milestones and started experiencing seizures. Further complicating his health, he was diagnosed with adrenal insufficiency and started on steroids. His medical journey led him to the Cleveland Clinic and later to the Mayo Clinic. Shortly after returning home, Lance suffered a grand mal seizure and was urgently airlifted to a larger hospital in Austin, Texas. My aunt requested that I stay with her at the hospital for a few days. It was then that she revealed they had a diagnosis: Alpers-Huttenlocher Syndrome. Tragically, three days later, Lance passed away, just like his brother Andrew, at the tender age of five. My aunt and uncle were the most loving, nurturing, and fiercely protective parents I’ve ever known. When I asked her about her reaction to the diagnosis, she expressed anger. Her feeling of helplessness was what distressed her the most. She was a zealous advocate for her children just like any parent, but the limited knowledge about Alpers-Huttenlocher Syndrome and other mitochondrial diseases meant that many children remain undiagnosed due to a lack of awareness, funding, and research. While many diseases are preventable, mitochondrial diseases are not among them. Few other illnesses with such high morbidity and mortality are as poorly understood and recognized. These diseases merit more attention so that children like my cousins Andrew and Lance may one day grow up to have their own families. I’ve made the decision to organize this charity race with the hope of raising awareness and, ultimately, alleviating the suffering of families affected by this cause. My aim is for the funds raised to contribute to ongoing research efforts, bringing us one step closer to finding a cure. ## Thank You Sponsors and Donors! ![](https://www.mitoaction.org/wp-content/uploads/2024/08/Cirkul-Logo-12-1024x295.png) --- ### [Genetic Counselors Volunteers](https://www.mitoaction.org/join-the-cause/volunteer/genetic-counselors-volunteers/) **Published:** December 2, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") We are excited that you have shown interest in volunteering with MitoAction! Genetic Counselors and their work are very important to our community! We are currently organizing a special group of volunteers who are genetic counseling students and licensed genetic counselors. Please take a moment and fill out the form below so we can better understand your areas of interest, and time commitment. "\*" indicates required fields CommentsThis field is for validation purposes and should be left unchanged. First Name\* Last Name\* Email\* Phone\* Address Street Address Address Line 2 City AlabamaAlaskaAmerican SamoaArizonaArkansasCaliforniaColoradoConnecticutDelawareDistrict of ColumbiaFloridaGeorgiaGuamHawaiiIdahoIllinoisIndianaIowaKansasKentuckyLouisianaMaineMarylandMassachusettsMichiganMinnesotaMississippiMissouriMontanaNebraskaNevadaNew HampshireNew JerseyNew MexicoNew YorkNorth CarolinaNorth DakotaNorthern Mariana IslandsOhioOklahomaOregonPennsylvaniaPuerto RicoRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUtahU.S. Virgin IslandsVermontVirginiaWashingtonWest VirginiaWisconsinWyomingArmed Forces AmericasArmed Forces EuropeArmed Forces Pacific State ZIP Code Are you a licensed genetic counselor or a GC student?\* Genetic Counselor Genetic Counselor Student Other Please provide your affiliated institution. What day and time frame would be best for you to meet?Check all that apply. Work Week, Noon (EST) Work Week, 3 p.m. (EST) Work Week, 7 p.m. (EST) Work Week, 8 p.m. (EST) Saturday How many hours a month would you be able to commit to volunteering with MitoAction? 1 hour 1 to 2 hours 3 or more hours What type of projects most excite you?Check all that apply, and please feel free to write new ideas in the “Other” section. Help organize Energy Walks/ fundraising projects. Participate and volunteer during an energy walk. Maintain/update disease fact sheets on our website. Create educational pamphlets about Mito, geared toward GCs and PCPs. Create an educational handout: “Preparing for your genetics appointment.” Organizing an evening small group where Genetic Counselors can participate virtually and hear from patients about what it is like to live with mitochondrial disease. Work with MitoAction patient volunteers to investigate/write case studies of themes that have yet to be investigated in literature. Help facilitate educational activities on awareness week. Help facilitate educational awareness in congress about mitochondrial disease. Other Other suggestions for how you can be involved. Would you like to sign up for our mailing list?\*Mito NewslettersFAOD NewslettersBoth Mito & FAOD Newsletters CAPTCHA Submit --- ### [Thanks for Contacting Us](https://www.mitoaction.org/about-us/contact-us/thanks-for-contact-us/) **Published:** August 23, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Thank you for contacting MitoAction. We will be in touch with you shortly. --- ### [Application Submitted](https://www.mitoaction.org/programs-support/mitoaction-programs/marcelsway/application-submitted/) **Published:** November 20, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Thank you for submitting your Application to the Marcel’s Way Family Fund. **We require two letters describing the Beneficiary’s condition and confirming the usefulness of the funds requested. One letter must come from the Beneficiary’s Doctor and one letter from a Community Worker (Social Worker, Case Manager, Clergy Member, etc.).** We have emailed you cover letters and instructions for you to send to your Doctor and Community Worker. Your application will not be reviewed until we have received your letters. Applications are reviewed quarterly. --- ### [Liney's Lovies](https://www.mitoaction.org/programs-support/patient-and-family-support/lineys-lovies/) **Published:** September 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Patient & Family Support](https://www.mitoaction.org/programs-support/patient-and-family-support/ "Patient & Family Support") # Liney’s Lovies Liney’s Lovies provides comfort and joy to children affected by mito by gifting them soft, plush toys during times when they need extra support. ![](https://www.mitoaction.org/wp-content/uploads/2024/09/Caroline-with-Dr.-Pete-the-Puppy-—-Lineys-Lovies-—-MitoAction-768x1024.webp) We are thrilled to announce the launch of Liney’s Lovies, a heartfelt new program from MitoAction, named in honor of our beloved Caroline Payne, also known by her family and friends as “Tiny Caroliney.” Liney’s Lovies is dedicated to providing comfort and joy to children affected by mitochondrial disease by gifting them soft, plush toys during times when they need extra support. ![](https://www.mitoaction.org/wp-content/uploads/2024/09/Lineys-Lovies-logo.png) These special stuffed animals, or “Lovies,” are designed to offer solace and cheer to mito kids, making their everyday lives and medical appointments a bit easier and more comforting. This initiative aims to brighten their days and provide a tangible source of comfort when they need it most. ![](https://www.mitoaction.org/wp-content/uploads/2024/09/Caroline-and-Dr.-Peter-—-Lineys-Lovies-—-MitoAction-559x1024.webp)Our official “Soft Launch” of Liney’s Lovies will take place at the 2024 MitoAction Energy Walk in Syracuse, where all proceeds from the Kids’ Fun Run will benefit this new program. We invite you to join us in supporting this meaningful cause and helping us spread the word. With Liney’s Lovies, we hope to bring a smile to children in our community and offer them a soft friend to help them through their journey. Join us in making a difference and honoring Caroline’s legacy by supporting this special initiative. > “Special thanks to MitoAction for supporting our idea to honor Caroline, inspired by our time at the 2024 Sandra Russell Derby Day and meeting the families who are behind Dalia’s Wish and The Matthew Harty Camper and Scholarship Funds. Special thanks also to Jamie Duff for creating the logo. And thanks to TeeTurtle and GANZ and Aurora World Inc for providing plush animals and dolls. We are looking forward to a partnership with TOTYM as well. > > When we were inspired by other Mito families at Derby Day, we thought about two things that sort of define Caroline, and those are – the way she loves people and wants to make them happy, and how she loves her stuffed animals, especially Dr. Pete the Puppy, and how they help her through tough days, medical appointments and hospital stays, as well as entertain her on normal days too. And so, on the drive home from Boston in May, we came up with Liney’s Lovies, what the purpose would be, and secured some donations. Now we’re off and running, hoping to bring comfort and a smile to our community.” > > – Rhonda Payne ##### How to Order Just fill out the form below to send a special stuffed animal to a child with mito who needs extra support. "\*" indicates required fields URL This field is for validation purposes and should be left unchanged. Your Name\* First Last Your Email Address\* What is your connection to the recipient?ParentFamily MemberFriendDoctor / Nurse / Medical ProviderCaregiverOther Recipient's Name\* First Last Recipient's Address\* Street Address Address Line 2 City AlabamaAlaskaAmerican SamoaArizonaArkansasCaliforniaColoradoConnecticutDelawareDistrict of ColumbiaFloridaGeorgiaGuamHawaiiIdahoIllinoisIndianaIowaKansasKentuckyLouisianaMaineMarylandMassachusettsMichiganMinnesotaMississippiMissouriMontanaNebraskaNevadaNew HampshireNew JerseyNew MexicoNew YorkNorth CarolinaNorth DakotaNorthern Mariana IslandsOhioOklahomaOregonPennsylvaniaPuerto RicoRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUtahU.S. Virgin IslandsVermontVirginiaWashingtonWest VirginiaWisconsinWyomingArmed Forces AmericasArmed Forces EuropeArmed Forces Pacific State ZIP Code Gender of Recipientman/boywoman/girltransgendernon-binaryagendergender non-conforminggender fluidgenderqueertwo spiritothernone of theseprefer not to state Age of Recipient Recipient’s DiagnosisWhat is the Recipient’s Diagnosis?ACAD9 DeficiencyACAD9 DeficiencyAlpers' DiseaseAutosomal Dominante Optic Atrophy (ADOA)Barth SyndromeCACT DeficiencyCACT DeficiencyComplex I DeficiencyComplex II DeficiencyComplex III DeficiencyComplex IV DeficiencyComplex V DeficiencyCoQ10 DeficiencyCPEOCPT I DeficiencyCPT I DeficiencyCPT II DeficiencyCPT II DeficiencyCreatine Deficiency SyndromeCUD/Primary Carnitine DeficiencyCUD/Primary Carnitine DeficiencyFriedreich's AtaxiaGAII/MADD DeficiencyGAII/MADD DeficiencyKearns-Sayre Syndrome (KSS)Lactic AcidosisLCHAD DeficiencyLCHAD DeficiencyLeigh SyndromeLeukodystrophyLHONLHON PlusLuft DiseaseM/SCHAD DeficiencyM/SCHAD DeficiencyMCAD DeficiencyMCAD DeficiencyMCKAT DeficiencyMCKAT DeficiencyMELASMEPANMERRFMIRASMitochondrial CytophyMitochondrial DNA DepletionMitochondrial EncencephalopathyMitochondrial MyopathyMMDSMNGIENARPOtherPDCDPearson SyndromePOLG 2POLG MutationsPrimary Mitochondrial MyopathyPyruvate Carboxylase DeficiencyPyruvate Dehydrogenase DeficiencySCAD DeficiencySCAD DeficiencyTFPThymidine Kinase 2 Deficiency (TK2)UndiagnosedVLCAD DeficiencyVLCAD Deficiency Stuffed Animal Type\* We will do our best to accommodate your request based on the inventory of donated stuffed animals we have on hand. Tell us how Liney’s Lovies can help support and comfort this mito child?\* Would you like to sign up for our mailing list?\*Mito NewslettersFAOD NewslettersBoth Mito & FAOD Newsletters CAPTCHA Submit ## Liney’s Lovies Sponsors [![Totem Logo](https://www.mitoaction.org/wp-content/uploads/2024/10/Totym-Logo-—-Lineys-Lovies-Sponsor-—-MitoAction-300x120.webp)](https://totym.net/) --- ### [Things to Do While Visiting](https://www.mitoaction.org/events/internationalmetabolicconference/things-to-do-while-visiting/) **Published:** October 23, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # Things to Do While Visiting ##### Join MitoAction and the International Network for Fatty Acid Oxidation Research and Management (INFORM) for the 6th Annual International Metabolic Conference for Fatty Acid Oxidation Disorders (FAODs) in Detroit, Michigan, on July 25, 26 and 27, 2025. [Site Seeing in the Area](#site-seeing) [FAOD-Friendly Restaurants in the Area](#restaurants) ## Site Seeing in the Area Provided by Becky Noffsinger, FAOD Conference Committee Member, For anyone planning to extend their conference trip to a vacation in Michigan, late July is peak season and Lake Michigan is perfect this time of year. Temperatures are generally in the 80s and low 90s, cooler at night, and humid. Here’s a summary of popular places on the west side of the state; if you have specific questions about any of these let me know and I’ll help if I can. In general, you’ll want to book camping and rentals as soon as possible. ### “Downstate” **South Haven, Holland and Grand Haven** All three of these small cities are on Lake Michigan’s shore and have beaches and trails for biking/walking. They are more populated than up north, but that means there are plenty of restaurants and shopping and things to do. They all have state campgrounds right next to the water, within a few steps of the beach. You’ll pay for parking and access to most beaches here. **Muskegon: Hoffmaster State Park** We used to live near here and although Muskegon isn’t my favorite city, the state park is exceptional. The state campground will be closed starting July 7, but there are private campgrounds nearby. **Silver Lake State Park, Mears State Campground, Pentwater area** This is a very popular area and includes a huge expanse of sand dunes, some that allow off-road vehicles where you can rent dune buggies for the day. Pentwater is a lovely town nearby with miles of beaches. ### “Up North” **Ludington** Ludington has it all – beaches, shopping, state park, fishing, canoeing, and it is a bigger city without feeling crowded. It’s the first place most of us Michiganders consider “up north”, where there’s a different vibe (more relaxed, less populated, slower pace) than downstate. I’ve not visited the state campground, but it has a very good reputation. **Cadillac and Manistee National Forest** This isn’t on the Lake Michigan shore but is a very popular camping and gaming area. Cadillac sits on Mitchell Lake and the national forest has some really neat camping options. **Hartwick Pines State Park** Near Grayling in the center of the state, not close to Lake Michigan, but this is a very cool place to learn about old growth forests. They have a campground as well. We took the kids a few years ago for the day and the ranger-led activities are a lot of fun. **Manistee** Manistee has a vibrant arts community (the Ramsdell Theater is gorgeous), good restaurants, and beaches. No state parks here, but there are plenty of private campgrounds. **M-22** This state 2-lane highway follows the lakeshore, from Muskegon all the way north to Traverse City, and is considered one of the prettiest drives in the state. There are plenty of small towns along the way and you might find a small beach or two where it’s easy to jump out of your vehicle and into Lake Michigan. Bear Lake has a couple of Amish grocery/furniture stores, and Arcadia is very artsy with a public beach. **Up North Beaches** Once you get past Manistee, every town and many places in-between have little, locally governed beaches that are easily accessible and don’t always charge for parking. Some are roads that simply dead end at the beach—you can park on the shoulder and walk to the water. Others have playgrounds nearby and picnic tables and grills for picnics. If you’re feeling adventurous, some of our best memories are from beach-hopping up and down the lakeshore. Empire’s beach was my favorite when the kids were little because it had a nice playground, a small inland lake with a dock they could jump off and play in shallow water, a picnic area with grills, and a beach on Lake Michigan all within a small area. **Frankfort / Elberta** Full disclaimer: this is where Glenn grew up and where we lived when the kids were little, so we are completely biased. Frankfort is a small town on the north side of Betsie Bay (the deepest bay in Michigan) that gets very busy in summer. Elberta is a teeny tiny village on the south side of the bay with our favorite beach in the world. There are a lot of VRBO rentals ($$$) in summer and an RV park just outside of town, plus Harbor Lights hotel right on the beach and Crystal Mountain Resort about 20 minutes away. There are a couple of local campgrounds too. The beaches and parking in both towns are completely free, but parking spaces are limited. The Benzie Bus runs a free shuttle in summer too. Sleeping Bear Dunes is within an hour from here and makes a great day trip (see below). **Cherry Bowl Drive-In Theater** Just north of Frankfort is the Cherry Bowl Drive-In theater, an old-fashioned 50’s style drive in movie theater. Highly recommended! **Sleeping Bear National Lakeshore & Platte River Campground** You can easily spend several days at the Sleeping Bear Dunes National Park. Platte River Campground is our favorite place to camp, but reserve early (spots open for reservations 6 months ahead of dates). Pierce Stocking Drive is great because it’s all driving with little stops along the way with great views (I.e. no long hikes). Glen Arbor is a walk back in time (check out the blacksmith and lifesaving station demos), and there are a lot of fishing and canoeing options. **Traverse City** Bigger city with lots to do, great restaurants, boating, beaches, wineries, shopping, etc. **Leelanau Peninsula** Gorgeous, worth exploring little towns and beaches for a day or two. Check out Christmas Beach for Petoskey stone hunting! **Charlevoix & Petoskey** These are more popular lakeshore communities north of Traverse City. I haven’t spent a lot of time in these towns, but they have all the things you want in an up north trip. **Mackinac Island, Mackinaw City and The Bridge** This is very much worth the drive. Mackinac Island is a motor-free island accessible by ferry from Mackinaw City or, from the Upper Peninsula, St. Ignace. We usually park in Mackinaw City and ferry from there. Once on the island the Main Street has lots of touristy shops (fudge!) and a historic fort to explore. Outside of the main town area there are a lot of beautiful views, but it’s a lot of walking. You can bring your own bikes or rent them by the hour, or rent a horse-drawn carriage, but for first-time visitors just riding the ferry and exploring the main town is worth the trip. It’s really fun to stay overnight, but expensive, so most people stay in hotels or camp near Mackinaw City. There is a state campground near Mackinaw City in the lower peninsula, but I’ve not been there. Big Mac, or “The Bridge”, is a 5-mile span connecting the lower and upper peninsulas. Even if you just pay to drive across to the U.P. and come back again, it’s a cool experience. ### The Upper Peninsula If you’re really in for a road trip and want to explore the Upper Peninsula, it’s amazing! Let us know if you want to go and we can try to help. Tahquamenon Falls, Pictured Rocks, Marquette, and the Keweenaw Peninsula are popular places to explore nature and get outside. ## FAOD-Friendly Restaurants in the Area ![](https://www.mitoaction.org/wp-content/uploads/2024/10/Logo-Poke-Poke.png)#### Poke Poke – Sushi Unrolled 26579 Evergreen Rd Southfield, MI 48076 *15 min drive from Detroit Country Day School and 8 min drive to Marriott Hotel* **Phone:** (248) 354-4000 **Hours:** 10:30 a.m. – 9 p.m. **Website:** [https://eatpokepoke.com/](https://eatpokepoke.com/menu/) **Nutrition Information:** [https://eatpokepoke.com/](https://eatpokepoke.com/wp-content/uploads/2024/06/Poke-Poke-Nutrition.pdf) ![Logo - Zao Jun](https://www.mitoaction.org/wp-content/uploads/2024/10/Logo-Zao-Jun.png)#### Zao Jun New Aisan & Sushi 6608 Telegraph Rd, Bloomfield Hills, MI 48301 *8 min drive from Detroit Country Day School and 9 min drive to Marriott Hotel* **Phone:** (248) 949-9999 **Hours:** 11:30 a.m. – 10 p.m. **Website:** ![](https://www.mitoaction.org/wp-content/uploads/2024/10/Logo-Chipotle-1024x1024.png)#### Chipotle 26147 Evergreen Rd Southfield, MI 48076 *8 min drive from Detroit Country Day School and 9 min drive to Marriott Hotel* **Phone:** 248-353-3448 **Hours:** 10:45 a.m. – 10 p.m. **Nutrition Info:** [https://www.chipotle.com/](https://www.chipotle.com/nutrition-calculator) ![](https://www.mitoaction.org/wp-content/uploads/2024/10/Logo-Panera-Bread.png)#### Panera Bread 28681 Telegraph Rd Southfield, MI 48034 *11 min Drive From Detroit Country Day School and 7 min drive to Marriott Hotel* **Phone:** (248) 352-0936 **Hours:** 6 a.m. – 10 p.m. **Nutrition Info:** [https://www.panerabread.com/](https://www.panerabread.com/content/dam/panerabread/documents/c2-24-nutrition-guide.pdf) **Notes:** You can build your own salads and customize as needed! ![](https://www.mitoaction.org/wp-content/uploads/2024/10/Logo-Beaus-Grillery.png)#### Beau’s Grillery 4108 W Maple Rd Bloomfield Hills, MI 48301 *9 min drive from Detroit Country Day School and 9 min drive to Marriott Hotel* **Phone:** (248) 626-2630 **Hours:** 11 a.m. – 10 p.m. **Website:** **Notes:** Can accommodate steamed shrimp and steamed veggies, boiled chicken breast and custom salad. ![](https://www.mitoaction.org/wp-content/uploads/2024/10/Logo-Pho-ChopstiX.png)#### Pho ChopstiX — Southfield, MI 28308 Telegraph Rd Southfield, MI 48034 *6 min drive from Detroit Country Day School and 6 min drive to Marriott Hotel* **Phone:** (947) 282-8535 **Hours:** 11 a.m. – 8:30 p.m. **Website:** **Notes:** Rice has no oil; Can request special dish of steamed rice with steamed veggies and shrimp. They have a sauce with no oil. You can also request pho with veggie broth instead ofmeat broth. --- ### [Mito Navigator Toolkit](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/mito-navigator-toolkit/) **Published:** May 28, 2019 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Medical Child Abuse](https://www.mitoaction.org/planning-and-preparation/ "Back to Section") # Mito Navigator Toolkit This Toolkit can help patients, families and caregivers better navigate the medical system and feel more equipped to respond to any issues should they arise. ![](https://www.mitoaction.org/wp-content/uploads/2024/07/Woman-meeting-with-an-attorney-to-create-an-Estate-Plan-1024x683.webp) ### Navigating the Medical System Mitochondrial disease is a complex illness. Due in part to the fact that mitochondria can be found in every cell of the body (except red blood cells), mitochondrial disease has the potential to impact every organ, tissue and cell. Because of this complexity, navigating the medical system—with multiple specialists, therapists, practitioners and support staff—can sometimes prove to be overwhelming and difficult. And to make things even more complicated, Mito patients and families often become the subject of Munchausen Syndrome, Munchausen Syndrome by Proxy (MSBP) and [Medical Child Abuse](#Medical-Child-Abuse) allegations. In an attempt to assist individuals in navigating this Mito world and improving the care for themselves or a loved one, we have created this Mito Navigator Toolkit. We hope this content can help families better navigate the medical system and feel more equipped to respond to any issues should they arise. There are three key areas this toolkit will focus on Communication, Medical Records and Support. ![](https://www.mitoaction.org/wp-content/uploads/2024/10/Mother-and-Young-Daughter-Meeting-with-a-Doctor-—-MitoAction-1200x600.webp)#### Communication Clear and open communication is critical to the management of mito, and can also help avoid allegations of Munchausen’s Syndrome or Medical Child Abuse. [Learn More](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/mito-navigator-toolkit/mito-navigator-communication/) ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Doctor-filling-out-questionaire-1200x600.jpg)#### Medical Records Gathering and maintaining a complete set of medical records helps you get the most out of each doctors appointment, and also serves as a sound defense to any accusations of Medical Child Abuse that might arise. [Learn More](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/mito-navigator-toolkit/medical-records/) ![](https://www.mitoaction.org/wp-content/uploads/2023/01/MitoAction-Support-Group-Hands-Featured-Image-1200x600.jpg)#### Support Support for patients and caregivers is essential for weathering the ups and downs of life with mitochondrial disease. Learning how best to access that support is essential for the prevention of Medical Child Abuse allegations. [Learn More](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/mito-navigator-toolkit/mito-navigator-support/) --- ### [Mito Navigator - Support](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/mito-navigator-toolkit/mito-navigator-support/) **Published:** May 29, 2019 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Mito Navigator Toolkit](https://www.mitoaction.org/planning-and-preparation/ "Back to Section") # Support Support for patients and caregivers is essential for weathering the ups and downs of life with mitochondrial disease. Learning how best to access that support is essential for the prevention of Medical Child Abuse allegations. ![Support for patients and caregivers is essential for weathering the ups and downs of life with mitochondrial disease.  Learning how best to access that support is essential for the prevention of Medical Child Abuse allegations.](https://www.mitoaction.org/wp-content/uploads/2023/01/MitoAction-Support-Group-Hands-Featured-Image-1024x512.jpg) ### Support is Key! Living with a rare disease or caring for a person who suffers from one is never an easy task. Support for patients and caregivers is essential for weathering the ups and downs of life with mitochondrial disease. Learning how best to access that support, especially when caring for another person, is essential both to proper family functioning and prevention of Medical Child Abuse allegations. Patients and their families may find resources for support in a variety of places, including in-person or over the phone. Support through the Internet or social media also may be beneficial so long as you are mindful of what is perceived as a Medical Child Abuse “red flag” in those settings. #### Family and Close Friends More often than not, one parent tends to handle most of the care taking, medical appointments, prescriptions, and insurance issues. Frequently, it is the mother who takes on these responsibilities. It is important to note, however, that mothers are far more likely to be accused of Medical Child Abuse allegations, particularly when they have been serving as the primary caregivers for their children. To protect the mother from these types of allegations, it is important to have other family members or close friends attend appointments with the mother as well as stay with the child in the hospital. One parent should never be the only caregiver of a chronically ill child. In all cases, the support of family or close friends can be a vital lifeline. It is important not to shut people out, but rather try to let people in even if the situation is extremely stressful and difficult. #### Counseling at Hotline Support Families dealing with complex medical problems are under a good deal of stress. It is crucial to reach out for help before the stress becomes overwhelming. MitoAction established the Mito411 hotline to provide one-on-one support to patients and families dealing with mitochondrial disease. This volunteer hotline is available free of charge and may be reached by calling 1-888-648-6411 or emailing mito411@mitoaction.org. Learn more about [Mito411.](https://www.mitoaction.org/programs-support/mitochondrial-disease-support/mito411/) Do not hesitate to seek family or individual counseling as well. Such counseling can be helpful, especially when you find a counselor who has specific training or background in working with families dealing with chronic illness such as mitochondrial disease, cancer, and the like. Hospital social workers are an excellent source for counselors who might be skilled in issues surrounding chronic illness and caregiver stress. Please be aware that, when seeking help through a hotline or even through a counselor, individuals in these positions may be considered “mandated reporters” in your state. A mandated reporter is required by state law to report concerns of child abuse and neglect. If certain things you say in reaching out and seeking support are deemed to raise a concern of abuse or neglect, the person to whom you are speaking could be required to report you to the authorities. For more on the role of mandated reporters, visit the [Child Welfare Information Gateway](https://www.childwelfare.gov/topics/systemwide/laws-policies/statutes/manda/). #### In-Person Support Groups Local support groups can provide much needed interactions with others going through similar struggles and medical concerns. Some parts of the country have had Mito Patient & Family Socials, which are great opportunities to connect with other patients and caregivers. Learn more about hosting a [Mito Patient & Family Social](https://www.mitoaction.org/programs-support/mito-socials/host-a-mitosocial/) in your area. MitoAction can also connect you with a local family. To request a connection to another mito family, email . #### Virtual Support Groups Since 2008, MitoActon has hosted [Weekly Support Calls](https://www.mitoaction.org/programs-support/weekly-support-calls/weekly-support-calls/)[ ](https://www.mitoaction.org/programs-support/mitochondrial-disease-support/weekly-support-calls/)by teleconference on Fridays at noon ET (except for the first Friday of the month, which features a guest speaker for our Monthly Mito Expert Series). We encourage you to join us at anytime for a support group. All patients, family members and caregivers are welcome. MitoAction also has a strong Facebook presence, with several regional groups as well as a [nationwide closed discussion group](https://www.facebook.com/groups/22185295570/). Many patients and caregivers use the closed MitoAction discussion group to seek advice and input from mito peers. Another great resource for caregivers is the Caregiver Action Network, a non-profit organization dedicated to supporting all types of caregivers. Caregiver Action Network launched a special website for [Rare Disease Caregivers](http://www.rarecaregivers.org/), complete with extensive support materials and anonymous/de-identified message boards where caregivers can seek support. If you know of any additional in-person or virtual support groups that should be added to this page, please do not hesitate to contact us! --- ### [Communicating with Primary Care Physician](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/mito-navigator-toolkit/mito-navigator-communication/communicating-with-medical-professionals/) **Published:** September 30, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The most important medical professional on a patient’s care team is the pediatrician or primary care physician (PCP). The PCP needs to be a strong advocate for the patient and the family, and should be consulted before adding new specialists or making any major medical decisions. In essence, the PCP should serve as the quarterback for your medical team. The PCP should make all referrals, receive a copy of all medical records from every different specialist, and call ahead when the patient is heading to the hospital for treatment. This is true even if the patient’s insurance company does not require the PCP to make referrals. Having the PCP serve as the quarterback not only helps to ensure that a single medical professional is overseeing the full scope of the patient’s care, but also keeps the parents, especially the mother, from appearing in the role of the quarterback. Parent-driven medical care and decision-making is a red flag for alleged Medical Child Abuse; as one article from Cleveland Clinic published in the [Journal of Pediatrics](http://pediatrics.aappublications.org/content/128/6/e1467.full) concluded, mothers who seem overly involved in medical decisions and “doctor shop” by taking their child to multiple specialists without a PCP recommendation spark a concern with physicians. See C. Mash et al., “[Development of a Risk-Stratification Tool for Medical Child Abuse in Failure To Thrive](http://pediatrics.aappublications.org/content/128/6/e1467.full),” Pediatrics, Vol. 128 No. 6, at p. e1472 (December 1, 2011). If such decisions are made with and through the PCP, they are much more likely to be accepted by other medical professionals. In addition, PCP involvement for adult patients gives adults added validation and support if they encounter a specialist who believes the symptoms are “all in their head.” With a disorder as complex as mito, PCPs sometimes become overwhelmed by the amount of new information and are hesitant to manage the patient’s symptoms on their own. it is important to ask your mitochondrial disease specialist to support your PCP through emergency protocols, information on potential treatments for specific symptoms, and availability for consults should an emergency arise. Sharing the Mitochondrial Medicine Societies papers on diagnosis and care can provide strong foundational knowledge for PCPs and non-Mito specialists. While it is important for the PCP to be actively involved with the treatment and medical decisions made for the patient or child, it is not solely the responsibility of the parent or adult patient to act as the secretary or the mediator to make it happen. If parents or adult patients are having difficulty engaging the PCP, they should consider using a patient advocate from the hospital or from the PCP office. Parents should refrain from calling the PCP day in and day out. For more tips on advocating responsibly, please visit [MitoAction’s page on advocating effectively](https://www.mitoaction.org/advocating-effectively) or [Jonah & The Whale Foundation’s Advocating Tips page.](http://www.jtwf.org/ar_Tips.html) If, over time, you are not seeing the PCP step into the role of the quarterback, it might be worth seeking out another practice. Some hospitals have complex care clinics that can be useful for Mito patients who see lots of different specialists. Other primary care practices are adopting the family-centered [medical home](https://www.mitoaction.org/resources-planning/medical-child-abuse/medical-home/) model, which seeks to provide more patient-focused care. Some practices are simply more responsive and better equipped to handle complex cases. It may take some time and patience to find the PCP that is right for your family. --- ### [Communicating with Medical Professionals in the Hospital](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/mito-navigator-toolkit/mito-navigator-communication/communicating-with-medical-professionals-in-the-hospital/) **Published:** September 30, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Although dealing with a chronically ill child who is hospitalized frequently tends to lead to natural friendships with medical staff parents see on a regular basis, it is imperative to remember to maintain good boundaries when communicating with medical professionals and staff. Medical personnel, including nurses and therapists, are mandated reporters who must report suspicions of child abuse to the state child protective services department. An offhand comment or venting session can easily be misinterpreted by someone who maintains this professional obligation and may inadvertently lead to an investigation by Child Protective Services. Please [click here](https://www.mitoaction.org/day-to-day-with-mito/advocating-effectively/) for more information on communicating and advocating with medical professionals. Given these risks, families should try to seek support from outside of hospital personnel while their child is hospitalized, especially for extended periods of time. [MitoAction’s Mito411](https://www.mitoaction.org/programs-support/mito411/) line is always available for support via [email](mailto:mito411@mitoaction.org) or phone at 1-888-MITO-411 (648-6411) or our [Weekly Support Calls](https://www.mitoaction.org/programs-support/weekly-support-calls/weekly-support-calls/). Various local non-profit organizations also exist for in-person support. Ideally, hospitals and complex care practices also provide opportunities for outside support so families don’t feel so dependent on the medical community to fill that void. Hospitals usually have social workers who can direct families to appropriate resources that can provide in-person support, and primary care physicians might also know of resources. Identifying such resources in advance of a hospitalization will lessen stress significantly when a crisis emerges. ![Mito411 is a great resource for help in communicating with medical professionals.](https://www.mitoaction.org/wp-content/uploads/2023/01/Mito411-Logo-Recolored-916x1024.png) --- ### [Mito Navigator — Communication](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/mito-navigator-toolkit/mito-navigator-communication/) **Published:** May 28, 2019 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Mito Navigator Toolkit](https://www.mitoaction.org/planning-and-preparation/ "Back to Section") # Communication Clear and open communication is critical to the management of mito, and can also help avoid allegations of Munchausen’s Syndrome or Medical Child Abuse. ![Clear and open communication is critical to the management of mito, and can also help avoid allegations of Munchausen’s Syndrome or Medical Child Abuse.](https://www.mitoaction.org/wp-content/uploads/2024/10/Mother-and-Young-Daughter-Meeting-with-a-Doctor-—-MitoAction-1024x683.webp) Clear communication between the patient, caregivers, and medical providers, as well as among the physicians, nurses and therapists who make up the patient’s care team, is critically important to the management of mitochondrial disease. Open lines of communication and strong documentation of medical decisions also help patients and families to avoid allegations of Munchausen’s Syndrome or Medical Child Abuse. Since communication can affect medical treatment and continuity of care so greatly, we have included tips and resources to help families communicate effectively with their medical providers. ## Communication Resources [Communicating with Primary Care Physician](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/mito-navigator-toolkit/mito-navigator-communication/communicating-with-medical-professionals/) [Communicating With Medical Professionals in the Hospital](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/mito-navigator-toolkit/mito-navigator-communication/communicating-with-medical-professionals-in-the-hospital/) [Sharing Research Findings with Professionals](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/mito-navigator-toolkit/mito-navigator-communication/sharing-research-findings-with-professionals/) --- ### [Mito Navigator — Medical Records](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/mito-navigator-toolkit/medical-records/) **Published:** March 25, 2019 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Mito Navigator Toolkit](https://www.mitoaction.org/planning-and-preparation/ "Back to Section") # Medical Records Gathering and maintaining a complete set of medical records helps you get the most out of each doctors appointment, and also serves as a sound defense to any accusations of Medical Child Abuse that might arise. ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Doctor-filling-out-questionaire-1024x683.jpg) ### The Importance of Medical Records Gathering and maintaining a complete set of medical records is not only a sensible practice, but helps you be prepared and get the most out of each doctors appointment. Also, having organized records also serves as a sound defense to any accusations of Medical Child Abuse that might arise. It is much easier to both collect and correct medical records before any issues arise. Moreover, having medical records on hand might actually deter a physician from considering Medical Child Abuse as a possibility, for it is much harder to argue with a third-party lab result than a parent. The **HIPAA** (Health Insurance Portability and Accountability Act of 1996) is legislation that provides data privacy and security provisions for safeguarding medical information. Understanding your rights under HIPAA will help you navigate the management of your medical records and how your information can be tracked, stored and used. Understanding Your Rights Under HIPAAMedical records are your property and can be obtained from the medical records department of any institution, hospital clinic or doctor’s office where you or your child is seen. It is a good idea to ask at every visit for a summary letter and copies of all laboratory results to be provided to you during an appointment, since doctor’s offices generally do not charge a fee when such documents are provided during an office visit. There may be a copying charge required when requesting them from a centralized medical records repository at a hospital or other facility; however, such fees generally are waived if the records are sent directly to a primary care physician or pediatrician. Be sure to ask the specialist’s office for a copy of the clinic note if it is not automatically sent to you after the appointment. In most cases, your request for copies must be granted within 30 days. You also have the right to be informed by your doctor or insurance provider, who has a seen your medical records. As a rule, your information cannot be used for reasons not directly related to your care without your consent. You can also set restrictions as to how your information is used. Below are additional resources from the [U.S. Department of Health and Human Services](https://www.hhs.gov/hipaa/for-individuals/guidance-materials-for-consumers/index.html) outlining your rights under HIPAA: - [Your Health Information Privacy Rights – PDF](https://www.hhs.gov/sites/default/files/ocr/privacy/hipaa/understanding/consumers/consumer_rights.pdf) - [Privacy, Security, and Electronic Health Records – PDF](https://www.hhs.gov/sites/default/files/ocr/privacy/hipaa/understanding/consumers/privacy-security-electronic-records.pdf) - [Sharing Health Information with Family Members and Friends – PDF](https://www.hhs.gov/sites/default/files/ocr/privacy/hipaa/understanding/consumers/sharing-family-friends.pdf) Correcting Errors in Medical RecordsTimely gathering and review of medical records is crucial to prevent errors from persisting in the patient’s hospital or physician records. If errors are found upon review, it is important to contact the provider as soon as possible. After obtaining copies of your medical records, you can request to have any wrong information in your file updated, or add any information that you feel is missing or incomplete. It is always a good idea to get a copy of the “complete” discharge summary before leaving the emergency room or hospital after an admission, especially one in which there have been disagreements over a diagnosis or treatment. Make sure to read this summary and ask that any incorrect information be changed before you leave. It is much easier to change the preliminary summary before you leave the hospital rather than trying to correct or change information once it is part of the patient’s official medical record. Do not be surprised or upset to find misleading or inaccurate information in the discharge summary, especially when there have been disagreements among physicians or with the patient or caregivers over diagnosis or treatment, for the summaries are often written by fellows or residents. Be polite but insistent that corrections be made before you leave, even if it might require involvement of a hospital administrator. Generally speaking, medical providers have as much of an interest in accurate medical records as patients do, and physicians in the office setting often will correct records upon request. However, in the event there is a disagreement between the physician or hospital and the patient, there is a [process under federal law](http://law.justia.com/cfr/title45/45-1.0.1.3.70.5.33.13.html) that requires amendments to be included with the patient’s medical records. The Center for Democracy and Technology has put together an excellent FAQ relating to obtaining and correcting medical records, which may be found [here](https://cdt.org/insight/getting-your-medical-records/#right). Hospitals and doctors’ offices also are required to have procedures relating to patient requests for medical records, so be sure to check with your provider as well regarding office policies. Paper and Electronic OptionsMaintaining key medical records in an organized manner allows for medical personnel to obtain a quick overview of your or your child’s medical situation. Labs and test results also can “speak for themselves,” thus saving a patient or family from having to explain the medical situation. While it is wise to maintain a copy of all medical records in your home files, it is unnecessary and potentially detrimental to bring all medical records to every appointment. Thick binders filled with every medical test result are not only confusing, but also may be considered a red flag for Medical Child Abuse. Streamlining the materials therefore is very important. The MyMito App platform can provide a solution for storing your medical records and give you the ability to organize and share your information electronically with those who need access. The MyMito App platform is HIPAA compliant and allows you to securely manage all of your medical records in the palm of your hand. Protocol Letters for EmergenciesWhen children and adults with mitochondrial disease become ill, their mito specialist often will instruct them to seek care, usually at the Emergency Room, during certain situations or types of illness. Since few, if any mitochondrial specialists typically are available in the ER during times that treatment is needed, it is imperative that themMito specialist’s instructions be communicated via a protocol letter or a letter of medical necessity. This letter is one that the patient or family would give to emergency personnel prior to treatment. It should include the date, patient’s full name, and specialist’s name and phone number for after hours, in addition to a detailed description of the patient’s diagnosis and treatment protocol during illness or other emergencies. If an emergency situation arises, it is always helpful to go to an Emergency Room where the PCP or specialists are on staff or have privileges. Having the PCP or specialist call ahead to the ER to alert the staff regarding the patient’s mitochondrial disorder also is a good idea; hopefully, this will prompt the ER staff to listen to the family or caregivers about the patient’s rare medical condition and follow the treatment protocol. The ER staff members also are more likely to accept information or recommendations from one of their own practitioners than from a physician at another medical center. MitoAction has [sample protocol letters](https://www.mitoaction.org/day-to-day-with-mito/protocol/), however, please keep in mind that any protocol letter will be disregarded unless it is personalized to the specific patient and signed by the mito specialist. You can share these templates with your doctor ada have them customized for your needs, and signed by your physicians. Also, protocol letters should be updated annually so that ER personnel can trust that the information and treatment plan are current. Failure to follow an ER protocol letter resulting in serious injury or death may be grounds for a medical malpractice lawsuit. Of course, no one wants to see the situation get to that point, so it is crucial to communicate effectively with the ER team about use of the protocol letter. If the ER team refuses to call members of the patient’s usual medical team, you may want to consider calling the mito specialist yourself. Make sure to keep calm, however, and communicate as best you can the importance of the instructions contained within the ER protocol letter. --- ### [Sharing Research Findings with Professionals](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/mito-navigator-toolkit/mito-navigator-communication/sharing-research-findings-with-professionals/) **Published:** May 29, 2019 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") In this day of virtually unlimited access to information, it is natural for patients and parents of a child with a rare disease such as mito — or a complex set of symptoms that looks like mito — to research the disease, potential symptoms and typical course of progression. High-quality information generally may be found on disease specific patient advocacy websites as well as [PubMed](http://www.ncbi.nlm.nih.gov/pubmed/), an online repository for medical literature run by the National Institutes of Health. By reading the literature, prudently searching the Internet and connecting with other families affected by mito, patients and parents often develop a very sophisticated and complete knowledge of the disease. From time to time, patients and families might find information relating to diagnosis, testing and/or treatment that they wish to share with medical professionals. Such information sometimes can change the course of treatment and might prove highly valuable to the medical team, especially if the physician is intellectually curious about the case or otherwise open to parental insights. It is important to recognize, however, that not all medical professionals are equally open to the participation of the parents or patient in the diagnostic process. One of the biggest red flags for allegations of Munchausen’s or Medical Child Abuse is a person who “exhibits a higher than average degree of medical savvy.” Laura Criddle, “Monsters In The Closet: Munchausen Syndrome by Proxy,” Critical Care Nurse, Vol. 30, No. 6 at 50, December 2010. Thus, balancing parental insights and the sharing of potentially helpful and relevant information with concerns over appearing “too knowledgeable” and “overly interested” in the diagnostic or treatment decision-making process is crucial. The real danger lies in approaching a doctor with “your research” rather than collaborating with them to try and find a path forward. Running such information past the PCP first is always a good idea if time permits; you may then present the new research or treatment option to the specialist as something that arose out of discussions with the PCP as opposed to being solely based on your own findings. This approach allows the PCP to act and appear as the quarterback time and again, especially in the eyes of the specialist. If you are seeking to present new treatment information or research to a physician with whom you do not have a preexisting relationship, such as in a hospital setting, it is still best to get the PCP or trusted specialist on board first before discussing with the hospitalist. Despite these hurdles of perception and logistics, it is still crucial for patients and families to trust their gut instincts and find a way to have new information heard by the right physicians. Patients and family members often have course-correcting insights as they are so focused on a single patient and know the symptoms and history of that patient so well. Try to refrain from taking credit for any helpful findings, however, as that will only add to “attention-seeking” concerns that could prompt Medical Child Abuse allegations. Rather, focus on moving the proverbial diagnosis/treatment ball forward while giving all of the credit to the physicians involved in the patient’s care. --- ### [Medical Child Abuse](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Planning & Preparation](https://www.mitoaction.org/planning-and-preparation/ "Planning & Preparation") # Medical Child Abuse Unfortunately, Mito patients and families often become the subject of [Munchausen Syndrome](#Munchausen-Syndrome), [Munchausen Syndrome by Proxy](#Munchausen-Syndrome) (MSBP) and [Medical Child Abuse](#Medical-Child-Abuse) allegations. We hope this content can help families better navigate the medical system and feel more equipped to respond to such claims should they arise. ![](https://www.mitoaction.org/wp-content/uploads/2024/07/Young-boy-and-his-mother-meeting-with-a-doctor-1024x683.webp) To be sick with a rare disease and to be doubted by medical professionals as to the truthfulness of symptom reporting and disease progression is absolutely devastating, especially where questions of parental fitness and child custody start to arise. It is MitoAction’s hope that the pages below will help Mitochondrial disease varies greatly in its presentation and affects a wide range of body systems and organs. Testing is not clear-cut and is continuously evolving, and most practitioners are not familiar with the spectrum of possible symptoms. As a result, Mito patients and families become the subject of [Munchausen Syndrome](#Munchausen-Syndrome), [Munchausen Syndrome by Proxy](#Munchausen-Syndrome) (MSBP) and [Medical Child Abuse](#Medical-Child-Abuse) allegations far more frequently than those with more well-described diseases. Hospitals are often too quick to separate children from parents suspected of Medical Child Abuse, adding even more stress and trauma to an already difficult situation. Moreover, virtually every adult mitochondrial disease patient has experienced questioning from medical professionals regarding a potential psychological underpinning for their symptoms, which often can delay diagnosis for months or years. Claims that adult symptoms are “psychosomatic,” “malingering,” “factitious,” “functional neurologic” or “somatoform” are hugely detrimental to patients and families and bring with them tremendous psychological and physical consequences. ### What are “Munchausen Syndrome” and “Munchausen Syndrome By Proxy”? Munchausen Syndrome, now listed in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) as “Factitious Disorder Imposed on Self,” is an adult psychiatric condition in which a person fakes symptoms of illness in order to draw attention to him or herself. When a parent or caregiver fakes a child’s illness to garner attention and sympathy, the disorder has historically been known as “Munchausen Syndrome by Proxy” (MSBP), and now is called “Factitious Disorder Imposed on Another” in the DSM-5. While rates of occurrence are very difficult to determine, Munchausen Syndrome is thought to have a prevalence rate of less than 1% and Munchausen Syndrome by Proxy is exceptionally rare, with a prevalence rate of 0.5 to 2 per 100,000. ### What is Medical Child Abuse? Medical Child Abuse (MCA) is a recently defined form of child abuse in which the primary caregiver (usually a parent) is accused of “overmedicalizing” a child. The caregiver is accused of falsifying a pediatric medical condition or exaggerating symptoms, which often leads to the child undergoing a number of unnecessary and potentially harmful hospitalizations as well as invasive procedures and tests. Intent of the caregiver no longer needs to be considered for an allegation to be brought against a parent; accordingly, more and more families are falling under the MCA umbrella. ### Development of MitoAction’s Advocacy Task Force While claims of Munchausen Syndrome and MSBP have long plagued the mitochondrial disease community, the issue of Medical Child Abuse in the Mito community came to a head in 2013 when a family caught in the middle of a diagnostic dispute between two hospitals lost custody of their child with a presumed mitochondrial disorder for more than 15 months. With similar cases cropping up around the country, MitoAction empaneled an Advocacy Task Force comprised of medical professionals, attorneys, adult patients, caregivers, and parents who had themselves been accused of Munchausen’s Syndrome by Proxy or Medical Child Abuse. The goal of the Advocacy Task Force is to create educational and awareness materials that would address the concerns of the mitochondrial disease community with respect to such allegations. The materials on these pages are the product of the Advocacy Task Force’s research, personal experiences, debates and discussions. **In no way should the suggestions contained herein be construed or substituted for professional legal or medical advice.** MitoAction is by no means responsible for any accusations, legal actions, damages or adverse judgments received by site users due to use of or reliance upon these materials. To view MitoAction’s complete Terms of Use, please [click here](https://www.mitoaction.org/terms-of-use/). ## Medical Child Abuse Resources #### Mito Navigator Toolkit This Toolkit can help patients, families and caregivers better navigate the medical system and feel more equipped to respond to any issues should they arise. [Learn More](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/mito-navigator-toolkit/) #### Social Media & Online Interactions Social media can help you connect with others and find much needed support, but unfortunately it can also be used to build a case for “attention-seeking behavior”. [Learn More](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/social-media/) #### Responding to Allegations of Medical Child Abuse If you’re facing false allegations of medical child abuse, **you need a plan of action.** Start here in developing one. [Learn More](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/responding-to-medical-child-abuse/) #### Developing a “Medical Home” A “medical home” is a repository of medical records data, overseen by your primary care physician or pediatrician. [Learn More](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/medical-home/) --- ### [Developing a "Medical Home"](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/medical-home/) **Published:** September 30, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > “A family-centered medical home is not a building, house, hospital, or home healthcare service, but rather an approach to providing comprehensive primary care. In a family-centered medical home the pediatric care team (or adult care team) works in partnership with a child and a child’s family to ensure that all of the medical and non-medical needs of the patient are met. Through this partnership the pediatric care team (or adult care team) can help the family/patient access, coordinate, and understand specialty care, educational services, out-of-home care, family support, and other public and private community services that are important for the overall health of the child and family. The American Academy of Pediatrics (AAP) developed the medical home model for delivering primary care that is accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective to all children and youth, including children and youth with special health care needs.” > > American Academy of Pediatrics ([https://www.aap.org/en/practice-management/medical-home](http://www.medicalhomeinfo.org/)) The family-centered medical home model for primary care is becoming the gold standard and has been endorsed fully by the American Academy of Pediatrics. Some states have agreed to participate in the medical home program and provide both grants and incentives to primary care physicians for their participation. A medical home can maintain the patient’s chart in an organized fashion and may decrease confusion and mishandling of records. Even if your primary care physician or pediatrician does not follow a full medical home model, having your pediatrician take an active role in holding all the information from the medical team within the office’s information hub for you or your child’s care can greatly improve organization of the medical records. It also gives the appearance that someone other than the parents or patient is in charge of the medical care, thereby decreasing concerns over Medical Child Abuse or Munchausen Syndrome. One of the downsides to a medical home is that it only pertains to medical records and is not a central place for educational records. It also can be difficult to find a pediatrician or primary care physician willing to take on such responsibility, especially in states that do not participate in the medical home program. However, if properly implemented, the medical home model can provide great benefits to the complex patient and his or her family. ### Other Resources [American Academy of Pediatrics — Medical Home](https://www.aap.org/en/practice-management/medical-home) --- ### [Responding to Allegations of Medical Child Abuse](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/responding-to-medical-child-abuse/) **Published:** May 28, 2019 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") #### The Mito411 Plan of Action *MitoAction’s Mito411 support line has supported numerous families through allegations of Munchausen Syndrome by Proxy, or in recent years, the newer and broader concept of Medical Child Abuse.* Generally speaking, parents facing false allegations of medical child abuse *need* a plan of action. In the midst of heart-wrenching accusations and separation from their child or children, parents – especially mothers – need something tangible to do to ease the likely intolerable situation that was often unknowingly thrown upon them. Here is Mito 411’s four-step plan for responding to false MSBP or MCA allegations: ### 1. Get a Lawyer Finding a lawyer who knows his or her way around a Child Protection case is key. Such lawyers may practice “child welfare” law or might focus on “parent representation” in child protective services cases. This is very different from specializing in “family law,” which typically has to do with divorce and custody situations. Most states have laws providing for lawyers to be appointed if the family cannot afford legal counsel. Parents under this type of stress may not think clearly and may not understand all the proceedings. The lawyer ideally should attend all appointments with child protective services and review any documents requiring a signature. ### 2. Gather your Supports to Bolster your Case Against Medical Child Abuse Family supports include just about anyone who can verify that the parents are good parents, care for their child properly, and offer them a “normal” childhood. These supports include clergy members, neighbors, teachers, home health aides, home RNs, community doctors, office staff, PT, OT, and so forth. One family’s strongest letter was from the service dog trainer who had been working intensively with the family for a full week at the time of accusation. A written letter stating just how well the family cares for their child has been helpful on more than one occasion. It also can give the parents much-needed confidence when their parenting skills and choices have been called into question. It is best to do so early on, for once the process gets rolling, many health professionals are forbidden to offer such support even when they openly and fully support the family. Institutional providers, such as hospitals, home nursing services, and so forth, refuse to allow employees to write or even speak in support of a family after legal documents have been filed. In addition to gathering supports from multiple aspects of family life, be sure to ask for a team meeting early in the process to see if everyone can reach a common ground, clear up any misconceptions and simply begin the process of honest communication. If an attorney has been retained, it is important to have the attorney attend any team meetings to represent the family’s interests. ### 3. Gather Medical Documentation — Past and Current Be sure to get copies of all medical records documenting test results, diagnoses, and procedures, complete with dates and names. For example, if necessity of a G-tube is called into question, obtain the procedure notes, the test results, or physician notes as to why the G-tube was ordered. Include growth charts, RN notes, school notes, and so on, that support that decision. You should do this for as many diagnoses and/or treatments as possible. Who ordered this medication and why? Who told you your child had Mito and which test results or clinical data supported the diagnosis? This job can be cumbersome, but parents are entitled to this information, at least while they still have custody. This step is far more seamless when the parent follows the preventive measures of keeping a notebook of records written by the doctors themselves, or obtains copies of the discharge summary from each hospitalization and doctor’s notes from each office visit. Such documentation should include all communication from the time the medical problem occurs, including a log of the medical providers spoken to by the parent, what topic is covered, the date, time, and so forth. This information helps in court when a parent or lawyer may be asked to recall the events of a specific day. In the absence of such documentation, Child Protective Services will seem well-informed (because they have access to the chart) while the parents will struggle to remember what happened that day. When a parent can state, “Oh, yes, we met with the doctor on November 25 and discussed feeding options for our son,” the parent now is empowered, in control, and becomes less of a victim. All forms of contact with medical personnel, including phone calls, appointments, emails or letters received should be documented. Some suggest a spiral notebook so that pages cannot be easily added, but it may not make as much of a difference in this day of technology. ### 4. Watch your attitude in every arena — “Play Nice!!” While this step makes sense and sounds easy, it is never easy. The parents’ world has been turned upside down and they often feel like they have lost everything. Parents question the foundation of their parenting and are furious that this could have ever happened. Many feel blindsided, isolated, scared, embarrassed, and a million other emotions all at once. A natural reaction to such strong reactions is to yell in an attempt to be heard. Parents falsely accused of Medical Child Abuse know that their child needs them and is scared. They also know deep down that they *are* good parents, no matter what the system might be saying. Some parents end up doing anything to get the child back or to see the child, including agreeing to charges that they do not understand. Other parents tend to lash out and become “aggressive,” “hostile,” and “difficult,” and may have had tougher or more demanding personalities to begin with. Playing nice, therefore, is not easy, but it is vital to the communication process. Of course, the medical professionals and Child Protective Services agents of each state need to keep communication as welcoming and civil as possible, holding themselves to the highest of standards. Keep in mind, however, that Child Protective Services has no obligation of confidentiality, so anything said during the course of an investigation is fair game for use in a future court proceeding. ### Additional Thoughts Regarding Medical Child Abuse Medical Child Abuse allegations in Mito families generally seem to be the result of a perfect storm, with many visible red flags seemingly unseen by the families. Not only do families need to be warned about these flags, but medical professionals need better tools to differentiate between a true red flag for abuse and a typical family trying to figure out what “normal” really looks like for a medically fragile child. There is, of course, an enormous value in ***preventing*** allegations of Medical Child Abuse before a point is ever reached that would cause removal of a child from the home. To avoid crisis mode for the sake of the whole family, it is vitally important for caregivers to recognize the red flags that may lead to accusations. These red flags are discussed in detail in the [Mito Navigator Toolkit](https://www.mitoaction.org/mito-navigator-toolkit/). It is common knowledge that mothers are the ones accused of Munchausen’s by Proxy and Medical Child Abuse nearly all of the time. Fathers are drawn in if they believe that the accused mom is, in fact, a good parent, or if they have allowed the mother to make medical decisions without stepping in. It is clear that fathers don’t win, either. One accused father shared that he would have been awarded custody of his girls only if he signed a court document stating that his wife was purposely harming the children. His alternative “choice” was to also be accused of Medical Child Abuse and have the girls go to foster care. In the end, he just could not say that his wife was a bad mother when she had given up everything for the girls. Very rarely, some parents may lose sight of where their child may fall in the health-illness continuum. Fatigue and genuine fear are all a part of the picture, and simple (but time-consuming) education could prevent much conflict and misunderstanding. Medical personnel have more pressure and less time these days, but they still have an obligation to listen, educate, and do no harm. Moreover, the medical world is still learning about all the nuances of Mito, and although parents know their child better than anyone, they too need to trust the child’s medical team in changing treatment approaches even if those same steps did not work six months ago. ### Social Media and Publicity As for social media, families need to be very careful of what is posted on Facebook, Twitter, blogs, Instagram, etc. Parents use social media as the new backyard chat with friends, but this form of communication is anything but a private conversation between friends. Yes, parents love the support they feel from the Facebook Mito groups or the hints that they may get from the G-Tube forum, but they need to be extremely careful and mindful of each post. Such information should be taken down immediately if Medical Child Abuse allegations are raised, especially blogs that focus primarily on the child’s medical journey without balancing segments on the wonderful things that child is also doing. Some families maintain Facebook pages in a child’s name that are only updated (with pictures) when the child is in the hospital or undergoing testing. While it is understandable that a parent would post when stressed, such blogs do give a very lopsided view of the child’s life. The point is to avoid painting the picture that the child’s life centers only around sickness, procedures, and doctors, for the concern in Medical Child Abuse/Munchausen’s Syndrome by Proxy cases is that the parent perpetuates the cycle of illness so as to receive sympathy and secondary gain from having a chronically ill child. The above recommendations may seem a bit paradoxical because Mito kids *are* chronically sick and there is not much a parent can do to stop the progression of a progressive disease. Experience has shown, however, that parents who are not mindful about the social media balance are at high risk for allegations of Medical Child Abuse. Instead, it is important for parents to find a trusted friend and seek support face to face rather than via social media. MitoAction also has found that fighting Medical Child Abuse allegations in the media has not worked out well for the families, likely because everyone digs their heels in and will not budge an inch for fear of being viewed as guilty in a public forum. Attempts to “go public” with a Medical Child Abuse situation tends to lead to longer separation of children from parents and difficulty with obtaining medical care for the child after reunification. Negative comments about physicians and hospitals on social media also are extremely unhelpful. The best advice MitoAction can give regarding social media is to be mindful of everything that is stated, posted, and written about your family. ### A Caveat It may sound like this Plan of Action would restrict parents’ abilities to speak up on behalf of their child in the event of a medical crisis. Restriction of such communication is not at all the intent. Rather, the intent is to protect the child or Mito patient above all. Ultimately, children belong with their families and solid communication and education of *both* medical professionals and parents can keep families safely together. There is no denying that parental instincts are vital and incredibly valuable. Parents spend many, many hours each day with the child, understanding that child in a way that no one else could after a couple of office visits or a few days in the hospital. Adult patients also uniquely know their bodies. This experience-based knowledge needs to be respected as it can offer unique and accurate insights with regards to ongoing care. However, the frequency of Medical Child Abuse allegations in the mitochondrial disease community makes rational advocacy skills and thorough documentation of medical decisions even more important, for some physicians are not as willing to simply listen to the patient and trust the multi-system presentation of mitochondrial disorders. As part of advocating effectively within the medical system, it is important to understand your rights as a patient or caregiver. Hospitals generally have patient bills of rights, which typically state that parents and patients have the right to seek the best possible care for their children and/or themselves. Parents do need to effectively advocate and communicate on behalf of their children. Most importantly, parents and patients, when faced with a critical medical situation, do need to put the best interests of their child first and speak up, even if doing so might risk a conflict with medical staff. If your family ever is targeted with false allegations of Medical Child Abuse, do keep this in mind: it might be worth advocating strongly on behalf of a child who truly is declining in health. There may be a time and place for trusting parental instincts and using every available avenue to get the care your child needs, even if it may mean risking custody of your child. ### MitoAction’s Mito411 Support Line Is Here For You! Mitochondrial disease is not an easy journey, and Mito families are disproportionately affected by Medical Child Abuse allegations. If you feel as though you need further support in responding to allegations of Medical Child Abuse, please reach out to [MitoAction’s Mito411 line](https://www.mitoaction.org/programs-support/mito411/). While our volunteers cannot provide legal or medical advice, they are more than willing to listen and share suggestions during a stressful and difficult time. Please know that MitoAction is here to support you and your family should such false allegations ever be brought against you — you are not alone! --- ### [Caring for Yourself Before, During and After Your Next Doctor Visit](https://www.mitoaction.org/day-to-day-with-mito/care-coordination-management/caring-for-yourself-doctors-visit/) **Published:** January 17, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Remember: Everyone is different in how they get their needs met: Know yourself … Trust yourself! *\*\*Please note that this document is “For the Patients and By the Patients”. This means that Mito Action cannot fully endorse any of the below recommendations or comments. These items were created by a close knit of people who are our MitoChampions. This document is to be used as a source of encouragement.* ## Mental and Emotional Preparation Before Your Doctor Visit *\*\*Don’t forget to check out [“How to Prepare for Your/Your Loved One’s Next Doctor’s Visit”](https://www.mitoaction.org/day-to-day-with-mito/changing-physicians/prep-for-doctors-visit/) for more ways to physically prepare for your doctor visit!* 1. **Affirm yourself in your mind ahead of time** - I know my body better than anyone in the world! - I am doing what I need to care for my body, the best way I know how: no matter the outcome of the appointment. - I am my best advocate. I am strong. I am able to do this. - I am doing my best to take care of myself. 2. **Go into the visit with a positive attitude**. Remind yourself that each visit is a “new visit” and “new opportunity.”. 3. **Affirm your diagnosis/symptoms** - Affirm with yourself what you already know to be true and remind yourself that a doctor’s visit may not always be the best space to validate your symptoms, but support groups are! - Consider attending support groups before an appointment. Support groups create valuable sounding boards of emotional support, while helping you to prepare to advocate for yourself. 4. **Create an exit plan and give yourself permission to exit in a way that feels most comfortable.** It is helpful to be simple and direct with your physician/ nurse about why you need to leave, but if you feel unsafe or triggered, trust yourself. You can leave without explaining yourself. 5. **Recognize that things may not always go as planned, so try to prepare yourself to be patient with both yourself and your provider.** (i.e. appointments may take longer than expected, unforeseen testing can occur, etc.) For ideas of what to pack in your doctor visit bag click [here](https://www.mitoaction.org/day-to-day-with-mito/changing-physicians/prep-for-doctors-visit/). 6. **Consider who to reach out to for support on your way to your appointment, while you are waiting, and/or on the way home.** Remember some friends may be more skilled at supporting you at different times! Having spaces to process before, during and after appointments are very important. Reflecting ahead of time as to who are your best and safest people of support, is a vital part of emotional preparation. 7. **Walk into the doctor’s appointment with confidence.** Treat it like it is a “meeting” and use affirmations like “I am leading it!” or “I can do this!” Remember confidence is drawn out from within! “Am I good enough? Yes I am!”-Michelle Obama 8. **Ask yourself: How can I flip the script?** For example, if the doctor is late, first validate your frustration, then instead of staying in that emotion, try to flip your understanding of the situation by thinking, “I love the way they spend time with their patients!” 9. **Actively create an environment of calmness** a couple days before your appointment. - Slow down; read a little longer/take a longer bath. Whatever is self care for you! - Remove unnecessary distractions. - Pray/meditate/seek out higher power. ## Emotional Self Care During Your Doctor Visit 1. **Make your accommodations/needs known to the office staff** and check in with yourself to see if you feel comfortable with their response. 2. **While you are waiting to see the doctor, take a giant deep breath in and breathe out slowly. As you breathe out, release any worry or anxiety. Use this time to focus on:** - 3 positive prepared affirmations - 3 moments of joy - 1 thing that you would like to better understand from this appointment 3. **Acknowledge that there are a variety of ways to accomplish what you need.** If you have a typical methodology for getting things accomplished, acknowledge this, but also try to be open to a doctor’s new suggestions. 4. **Check in with the doctor to see if they had an opportunity to look over your records.** Give the doctor time and space to read what you have provided, if needed. 5. **Check in with yourself periodically during your visit.** Ask yourself**:** - How am I feeling right now? At this moment? - What is my doctor’s personality/ “bedside manner”? Does it naturally fit with my personality? Am I ok with that? 6. **Use “mindfulness” skills to stay in the present.** A fidget ball, something tactile to touch, or rubbing your fingers together may help. 7. **Remind yourself that your doctors are human and they may not have all the answers.** Healthcare providers are an important part of the mito journey. If your doctor is unfamiliar with mitochondrial disease that is ok! This may be an opportunity to advocate and educate. If you feel like a clinician’s lack of knowledge creates an unsupportive environment, it is also okay to consider an alternate provider. ## Now what?! After Your Doctor Visit 1. **Leave yourself time/space to process how the appointment went before you go home.** After the visit is completed, take a few minutes to reflect on the appointment. Go for a walk, get food or a drink, then jot down any follow up questions. Leave these with the receptionist or email them to your doctor directly. 2. **Be gracious with yourself.** You can “know” what to do during a doctor’s appointment, yet we all have moments where we still feel unprepared. Remind yourself that you did your best and you are not alone in this process. 3. **Give yourself permission to feel!** All kinds of emotions can arise during and after a doctor visit for various reasons. Whatever emotions you are feeling are ok and give yourself permission to cry, if you need to! 4. **If you have a challenging doctor’s visit…** - Know how to use your voice! Talk with the patient advocacy department if an appointment goes really poorly (you can do this months later too! You don’t have to decide immediately) - Give yourself permission to “let it be” if that will emotionally help you the best. - If you leave a review online, consider how you word the review. There is power in calm language. If you are angry, write out your review BUT DON’T send until you have put space between you and the event. Also, remember that not all clinicians read reviews. Is your purpose to share your thoughts with clinicians or “warn” other patients. - Work hard to not view all future appointments through a lens of pain created from a bad experience. - Phone a friend to process your experience/ role play. - Remember: There are tons of good doctors out there and you will find the right fit! - Put space between this visit and your next, if it is medically safe to do so. Space between visits may allow you to gather your thoughts, calm down, sort out your questions and hopes for the next visit. - Remember: You only have control over your own actions and you can choose to exit gracefully, but firmly, and be kind even if a doctor is not. It is not helpful to mistreat a doctor because you were mistreated. 5. **Share your positive experiences when you have a good doctor visit and don’t forget to refer this doctor to your other Mito friends!** ### View and Download information in PDF Form! [Download](https://www.mitoaction.org/wp-content/uploads/2024/01/Caring-for-Yourself-Emotionally-Before-and-During-Your-Next-Doctor-Visit-1.pdf) --- ### [How to Prepare for Your/Your Loved One’s Next Doctor’s Visit](https://www.mitoaction.org/day-to-day-with-mito/care-coordination-management/prep-for-doctors-visit/) **Published:** January 17, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Items to consider a week or two before your visit**. *\*\*Please note that this document is “For the Patients and By the Patients”. This means that MitoAction cannot fully endorse any of the below recommendations or comments. These items were created by a close knit of people who are our MitoChampions. This document is to be used as a source of encouragement.* ## Get Your Questions Ready - **Begin writing a list of questions several weeks before your appointment.** This will give you time to remember and reflect on what questions you have, and prioritize the most important ones! Create your list in the most accessible location (ie. phone, computer, or post-it note on your refrigerator!) - **Email questions to your doctor and yourself ahead of time.** This will provide extra time for your clinician to think about your most complicated questions and feel more prepared for your visit. - **Bring your questions to your doctor’s visit** (even if you previously sent the list to your doctor), so you both can stay focused on what is most important to you during your visit. Prioritize your questions, so you can make sure that you get to the questions that are most important. - Ask the most important questions first. Try to think of your extra questions as the “candy” or dessert of your appointments. - At the beginning of your appointment, share, “I have 3 main things I would like to talk about today.” Prioritize the top 2-3 questions and have realistic expectations of what can be answered during your appointment. - **Always bring an extra pen and paper/notecards to your visit.** It is normal to have questions come to mind at the last minute that you may want to jot down, and it is nice to have a space to write some of your clinician’s answers down. Decide ahead of time, “Do I prefer to take notes on my phone, in a notebook, or on notebook paper?” - **Bring questions from your referring doctor**. If you were referred for this visit, ask your referring doctor if they have any specific questions or updates that they would like you to relay during your appointment. ## Prepare Your Documents - **Get clarification from your referring doctor** as to why you are seeing a particular specialist. - **Consider bringing backup paperwork explaining the purpose of your visit** in case you are struggling to explain, on the day of your visit, why you are there. - **Bring a short summary of your medical condition/genetics report and health summary.** This “cheat sheet” may include: - Name - DOB - Medical diagnosis(es) - List of current doctor(s) and their address(es)/ phone number(s), and fax(es) - Medical timeline - Description of specific acute event - List of current medications Consider working with your primary care or specialist doctor to create a “Medical Passport.” This is a one to two page document that you can carry with you, that gives new clinicians a brief summary of your diagnosis, treatment, and medical events that are important for them to note. Your health summary and diagnosis cheat sheet may be two different documents. Ask your referring doctor to put this on their letterhead. - **Update your medical binder and/or your “My Mito App”**: Many Mito patients have a medical binder that they bring to appointments with their most important medical paperwork. The “My Mito App” allows for documents and symptoms to be easily stored on your phone! Decide for yourself if you prefer to have one or both of these items with you on the day of your appointment. ***\*\*As you think through your questions and prepare your documents, it is important to know your doctor’s style and how/when they prefer to receive information. This takes time and it may help to ask your doctor directly to clarify this!*** ## Prepare for Your/Your Loved One’s Needs - **Ask a family member or close friend to attend your doctor visit with you** - This can help you remember what is said during your appointment, especially when you are struggling with brain fog. - It is easy to get overwhelmed with information. Having an extra set of ears during an appointment will give you someone to reflect with afterwards and provide emotional support. - **Consider if you need a “healthcare representative”** or outside agency available at your appointment. - **Ask your doctor if you can record the meeting or certain information** they are sharing, if this will help you remember particular items (ie. Some patients use the “abridge app”) ## Prepare for the visit to take longer than what you expect - Bring extra snacks and meals - Fluid (water and gatorade) - Phone charger and headset - Back-up Meds - Bring items for your service dog (print off ADA website what is a service dog and where they are allowed) - Bring a “fun bag” for your children (or yourself!). This may include games, books, coloring books and small toys! ***\*Consider creating a dedicated backpack that you keep packed and change every 6 months to conserve energy around your doctor visit preparations.*** ## Emotional Preparation - Remind yourself that doctor visits use both emotional and physical energy. To better prepare emotionally for your visit see: “Caring for yourself before, during, and after your doctor visits”. ### View and Download information in PDF Form! [Download](https://www.mitoaction.org/wp-content/uploads/2024/01/Preparing-for-Your_-Your-Loved-Ones-Next-Doctor-Visit.pdf) --- ### [Transitioning Your Care Team](https://www.mitoaction.org/day-to-day-with-mito/care-coordination-management/transitioning-your-care-team/) **Published:** September 23, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") From time to time, mitochondrial disease patients must transition care from one physician to another due to a household move, retirement of a practitioner, aging out of a pediatric practice or any number of other reasons. To facilitate such transitions, MitoAction has created and consolidated resources to help mitochondrial disease patients locate new physicians for their care. We encourage you to utilize our MyMito Platform to digitize your health history and share the content with your care team. From your health history to symptoms and medical incidents, MyMito will allow you to consolidate your day-to-day journey. Click here to learn more about the [MyMito](https://www.mitoaction.org/mitoaction_mobile/) app. MitoAction also is happy to provide suggestions to any mitochondrial disease patient who needs help with finding a doctor to manage their care. Please refer to the online [physicians’ directory](https://www.mitoaction.org/mitochondrial-disease/doctors/) for possible options and feel free to contact mito411@mitoaction.org if you need additional assistance. **Please note that physician names listed on the physician list or otherwise provided by MitoAction are suggestions only; the patient or caregiver ultimately is responsible for selection of medical providers. MitoAction also has no input into or control over whether a particular physician agrees to provide care to specific patient.** --- ### [Relationships with Medical Professionals in the Hospital](https://www.mitoaction.org/day-to-day-with-mito/care-coordination-management/relationships-with-medical-professionals-in-the-hospital/) **Published:** May 29, 2019 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Although dealing with a chronically ill child who is hospitalized frequently tends to lead to natural friendships with medical staff parents see on a regular basis, it is imperative to remember to maintain good boundaries with medical professionals and staff. Medical personnel, including nurses and therapists, are mandated reporters who must report suspicions of child abuse to the state child protective services department. An offhand comment or venting session can easily be misinterpreted by someone who maintains this professional obligation and may inadvertently lead to an investigation by Child Protective Services. Please click [here](https://www.mitoaction.org/day-to-day-with-mito/changing-physicians/advocating-effectively/) for more information on communicating and advocating with medical professionals. Given these risks, families should try to seek support from outside of hospital personnel while their child is hospitalized, especially for extended periods of time. MitoAction’s Mito411 line is always available for support via [email](mailto:mito411@mitoaction.org) or phone at 1-888-MITO-411 (648-6411). Various local non-profit organizations also exist for in-person support, such as local [Parent to Parent](http://www.p2pusa.org/p2pusa/sitepages/p2p-home.aspx) affiliates. Ideally, hospitals and complex care practices also provide opportunities for outside support so families don’t feel so dependent on the medical community to fill that void. Hospitals usually have social workers who can direct families to appropriate resources that can provide in-person support, and primary care physicians might also know of resources. Identifying such resources in advance of a hospitalization will lessen stress significantly when a crisis emerges. --- ### [Mito Sick Protocol](https://www.mitoaction.org/day-to-day-with-mito/care-coordination-management/protocol/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Being sick, even with a cold or a simple virus, is tough for most children and adult mito patients. Many people with mitochondrial disease are “wiped out” when ill, and can take much longer to recover. It is important to have a plan in advance about what to do when and if you, your family member, or your child gets sick. Below are sample plans that you can share with your physician and customize specifically for the mito patient, in the event of an illness or emergency. Please note that these letters are only samples. It is essential for your protocol letter be adapted specifically for your needs and printed on a letterhead with your physician’s name, signature, contact number, and date. Also, please remember to update your letter annually, even if the treatment is the same. A protocol letter that is over a year old may not be considered “active” and therefore not followed by ER physicians. \*For a more detailed understanding of protocol letters and their importance please see [Dr. Korson’s presentation](https://www.mitoaction.org/resources/protocols/). ### Additional Resources [Vomiting Protocol](https://www.mitoaction.org/wp-content/uploads/2022/12/protocol-vomiting.pdf) [Fever & Infection Protocol](https://www.mitoaction.org/wp-content/uploads/2022/12/protocol-fever-and-infection.pdf) [IV Fluid & Surgery Protocol](https://www.mitoaction.org/wp-content/uploads/2022/12/IV-Protocol-General-surgery-and-anesthesia-2.pdf) --- ### [Primary Care Physician Involvement and Interaction](https://www.mitoaction.org/day-to-day-with-mito/care-coordination-management/primary-care-physician-involvement-and-interaction/) **Published:** May 29, 2019 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The most important medical professional on a patient’s care team is the pediatrician or primary care physician (PCP). The PCP needs to be a strong advocate for the patient and the family, and should be consulted before adding new specialists or making any major medical decisions. In essence, the PCP should serve as the quarterback for your medical team. The PCP should make all referrals, receive a copy of all medical records from every different specialist, and call ahead when the patient is heading to the hospital for treatment. This is true even if the patient’s insurance company does not require the PCP to make referrals. Having the PCP serve as the quarterback not only helps to ensure that a single medical professional is overseeing the full scope of the patient’s care, but also keeps the parents, especially the mother, from appearing in the role of the quarterback. Parent-driven medical care and decision-making is a red flag for alleged Medical Child Abuse; as one article from Cleveland Clinic published in the [Journal of Pediatrics](http://pediatrics.aappublications.org/content/128/6/e1467.full) concluded, mothers who seem overly involved in medical decisions and “doctor shop” by taking their child to multiple specialists without a PCP recommendation spark a concern with physicians. See C. Mash et al., “[Development of a Risk-Stratification Tool for Medical Child Abuse in Failure To Thrive](http://pediatrics.aappublications.org/content/128/6/e1467.full),” Pediatrics, Vol. 128 No. 6, at p. e1472 (December 1, 2011). If such decisions are made with and through the PCP, they are much more likely to be accepted by other medical professionals. In addition, PCP involvement for adult patients gives adults added validation and support if they encounter a specialist who believes the symptoms are “all in their head.” With a disorder as complex as mito, PCPs sometimes become overwhelmed by the amount of new information and are hesitant to manage the patient’s symptoms on their own. it is important to ask your mitochondrial disease specialist to support your PCP through emergency protocols, information on potential treatments for specific symptoms, and availability for consults should an emergency arise. Sharing the Mitochondrial Medicine Societies papers on diagnosis and care can provide strong foundational knowledge for PCPs and non-Mito specialists. While it is important for the PCP to be actively involved with the treatment and medical decisions made for the patient or child, it is not solely the responsibility of the parent or adult patient to act as the secretary or the mediator to make it happen. If parents or adult patients are having difficulty engaging the PCP, they should consider using a patient advocate from the hospital or from the PCP office. Parents should refrain from calling the PCP day in and day out. For more tips on advocating responsibly, please visit [MitoAction’s page on advocating effectively](https://www.mitoaction.org/advocating-effectively) or [Jonah & The Whale Foundation’s Advocating Tips page.](http://www.jtwf.org/ar_Tips.html) If, over time, you are not seeing the PCP step into the role of the quarterback, it might be worth seeking out another practice. Some hospitals have complex care clinics that can be useful for Mito patients who see lots of different specialists. Other primary care practices are adopting the family-centered [medical home](https://www.mitoaction.org/finding-medical-home) model, which seeks to provide more patient-focused care. Some practices are simply more responsive and better equipped to handle complex cases. It may take some time and patience to find the PCP that is right for your family. --- ### [Planning for Emergencies](https://www.mitoaction.org/day-to-day-with-mito/care-coordination-management/planning-for-emergencies/) **Published:** March 25, 2019 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ### Advocacy, Communication, and a Bit of Planning! Medical emergencies are tough to avoid when living with mito or caring for a child or adult with mitochondrial disease. Preparedness is empowering and provides a path for faster and effective care. Complex, chronic disease is challenging both for the patients/families and for the medical staff in emergency departments, on-call clinics, and covering physicians called upon to treat mito patients in times of crises. Factors that hamper trust and communication include: - Medical professionals with little experience with mitochondrial disease, creating stress in the patients/families about their care. - Physicians that resent being told what has/has not worked in the past for a specific patient - Families who know what has been in the past to treat a specific emergency and want to share that information with medical staff, which is not always received well. - When the lines of patient/parent/physical become blurred. - Parent and patients that are under great stress during medical emergencies - Parents/patients that lose trust in staff who do not know about their/their child’s disease Effective communication between physicians, and between physicians and patients, is needed for safe and effective care. Patient and families are experts on the specific patient’s past experiences, and the physician is the expert in medicine! Both parties bring great tools to the table and must value each other’s expertise to get the best care. Creating Emergency Care Plans *before* that emergency hits facilitates effective care with medical staff who may not be familiar with mito in a specific individual. ### Steps to Improve Care and Communication in an Emergency: Create an emergency packet to keep in the cars of all who provide care, in purses and diaper bags, at schools, and on file at local ERs, on-call and other centers frequented for medical crises, as well as at local EMS and Fire companies. Stopping by to get to know emergency responders can be helpful to both the responders and family. Emergency Responders (EMT) are trained to look on home refrigerators and behind car seats for medical information. Entering emergency information onto a computer and keeping that info on a thumb drive and/or emailing the info to others involved in care is an additional option. Keep in mind that an adult may not be able to speak on his/her behalf and a child may be in the care of a sitter or grandparent who may not know disease details. Emergency packets help speak for the patient’s doctors and medical team, as well as for parents and family members, thus taking some of the pressure off family members during a time a great stress. Family members then have more time to be the mom, dad, or other family support! An emergency packet should include: 1. A cover sheet with critical information such as full name, date of birth, barriers to communication, and life-threatening allergies and conditions (latex allergy, deaf, blind, ataxia, PTSD, etc.) 2. Medication list with name of medication, dosage, frequency, and route of administration. Include the reason each medication is needed, who ordered the medication, and when first ordered. 3. Allergies list with name of allergen and type of reaction. Include medications, foods, latex, bee and all other known or suspected allergens. Note treatment parameters such as benadryl or epipen for specific levels of symptoms. 4. Diagnosis list, include when diagnosis was made. 5. Past surgeries with dates, including any complications. 6. Any other information that will aid in care, for example, a comfort item, extra need to be kept warm, assistance needed with drinking or eating, etc. 7. Physician contact list with names, specialty, address and phone and fax numbers. 8. Emergency contact list, including who to contact in case of emergencies – parents, spouses, child, significant other. 9. Insurance information with name, address, contact numbers, and ID numbers. 10. Other – child at school who may get off the bus to an empty house, or pets at home who may need care. ### Emergency Protocols and Directives The goal of preparing for emergencies is to strengthen communication between the patient and treating medical team and take some pressure off the patient/family to provide an accurate and detailed history during a crisis. To facilitate communication between physicians, the mito doctor and ER doctor, for example, protocols should be included in the emergency packet: 1. **Emergency Room (ER) Protocol** – is a key tool to expedite care in an emergency situation. Since mitochondrial specialists are not typically are available in the ER during times that treatment is needed, it is imperative that the Mito specialist’s instructions be communicated via a protocol letter or letter of medical necessity. A mito doctor, or other doctor familiar with a patient’s medical needs, maps out exactly what steps to take in an emergency for a specific adult or child. A protocol may contain pertinent health history, and needed bloodwork, precautions, and treatments. 2. **Procedure Protocols** –offer basic information on the patient’s specific medical requirements during a procedure, such as surgery with anesthesia, or fasting for medical testing. Information can be found on the MitoAction website at both “Mitochondria and Anesthesia” and “Mitochondrial Toxicity”. 3. **Health Care Proxy Form/Advanced Directive Forms** for both adults and children with severe illness are especially helpful for adult patients who may become unable to express their wishes while critically ill. An adult may designate a person(s) to make medical decisions if they become unable to do. The assigned proxy should understand his/her role to follow the patient’s wishes regarding emergency and life-sustaining care. Parents and/or guardians of children life threatening medical issues also need to discuss what emergency or critical care interventions are best for their child. Discussion on this topic needs to be ongoing, both before and during a crisis. Information on Advance Care Directives for adults can be found [here](https://www.everplans.com/advance-directive). An overview of the options for children can be found [here](http://www.articles.complexchild.com/sept2013/00491.pdf). Keep a copy of these documents on file with lawyers, PCP, family members, and doctors. 4. **Wear a Medical Alert bracelet or necklace**. The organizations with 24 hour a day phone-in lines can house detailed information, including the information listed above, to be provided to hospitals during an emergency. 5. **Use your mobile phone to house important medical information.** Some phones, like iPhones, can be set up to have medical information available on the home screen without the need to unlock the phone. Others put medical contact information under “ICE” or In Case of Emergency where emergency personal are trained to look. The [MyMito App](https://www.mitoaction.org/mobile) platform is also a great way to have the medical information that a you need available to you anywhere, anytime. ### Other Safety Tips – Ideas to Keep Safe and Help Communication in an Emergency! 1. Keep tabs on loved one who live alone. Call or text to check in or set up some system for a daily check for safety. A neighbor may be able to help with this step. 2. Anyone with ataxia, balance issues, cardiac, or other pressing health need should carry a phone or other device so calls are possible after a fall. 3. As age, cognition, and temperament allow, teach children basic safety measures, such as knowing how to use a phone to call 911, or getting an older child/adult to help. 4. If you have a child at home who is capable of learning a simple emergency protocol, be sure to practice it with them as a drill. Whether it’s dialing 911, calling a friend, or running to a trusted neighbor, be sure he or she is clear on how to recognize an emergency and knows exactly what to do. Even a child can benefit from education and empowerment to prepare for potential emergencies. Creating a plan for medical emergencies can ease stress in the ER on many levels! Providing ER staff concise, accurate, pertinent information can expedite care and improve outcome and can reduce patient/family stress that may arise when the staff is unsure how to treat their rare disease. --- ### [Communicating Effectively with Medical Professionals](https://www.mitoaction.org/day-to-day-with-mito/care-coordination-management/advocating-effectively/) **Published:** May 29, 2019 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ## Remember – What You Say Matters! If you are a parent of a child with a rare, chronic illness, you generally find yourself in the position of advocating for that child in medical situations. If the child is capable of advocating for himself or herself, by all means allow them to speak directly to the doctor about their medical issues. This is both good practice for the child and can protect the parents against overmedicalization concerns. If the child cannot take on that role, the parent must speak for the child, which requires great care and consideration. As a parent, you know your child better than anyone else in the world. If you feel that your child is not getting adequate medical care or needs to start or stop a specific intervention, you need to make that known. Trust your gut instinct and do not be afraid to speak up. As discussed in more depth below, it is important to gather your evidence and keep your calm when discussing such important issues with your child’s care team. If you find yourself clashing with a specific medical provider, be sure to pull in another trusted voice. Ideally, this would be the Mito specialist or a primary care provider who has known the child and the situation for a long time. Sometimes, allowing the other parent or a highly involved relative to take the reins can be sufficient to defuse a situation. Another option is to call in the hospital ombudsman, who can act as a mediator for different types of conflicts. At no point should you threaten, intimidate, use foul language or make accusations against the medical provider. While the stress of certain medical situations is undeniable, such behavior reflects poorly on the family and can come back to haunt the parents later. If you run into conflicts with multiple staff members, it might be worth consulting with an advocate or social worker to consider whether there is something in your own communication methods that can be improved upon. Documents speak louder than words in most cases, especially where medical questions are concerned. As discussed in the [Medical Records](https://www.mitoaction.org/day-to-day-with-mito/care-management/medical-records/) section of the Mito Navigator, keeping a copy of your medical records is one of the best ways you can protect yourself and your family. Be sure to separate out the records that documented or formed the basis for certain medical decisions and keep those handy. Refer to these key documents should issues arise during an appointment or a hospitalization. ## How You Say It Matters Just As Much! The old adage “you can catch more flies with honey than with vinegar” applies well to advocating on behalf of a child with a rare disease. Parents with a chronically ill child are under a good deal of stress, and sometimes this stress leads to irritation or aggravation when protocols are not followed or new decisions are made without consulting the specialists. Keep in mind that a level head and calm demeanor go much further in times of stress and frustration. ## Unintentional vs. Intentional Exaggeration Unintentional exaggeration happens with relative frequency in the medical world. For example, a parent may state to the child’s doctor that the child had a “high fever” with a temperature of 101.2 degrees Fahrenheit, whereas the child’s doctor might only consider a high fever to be over 103 degrees Fahrenheit. Similarly, a patient may claim to have a hyper-mobility syndrome which, upon examination, turns out not to be the case. Such situations happen regularly in medical practice and often are taken in stride by medical professionals. As described above, frequent reference to select and important medical records is the best way to ensure that you are not misrepresenting symptoms or findings in the patient’s history. When patients and parents are desperate for a diagnosis or treatment for themselves or for their child, however, they sometimes may intentionally exaggerate symptoms or medical issues out of fear that they may not otherwise receive the help they believe is needed. For example, a parent may state to a Mito specialist that the child is having seizures, but a subsequent conversation between the Mito specialist and neurologist indicates that she is not, or a patient may represent that the gastroenterologist instructed them to go off of a medication when that was not the case at all. Such misrepresentation is done with no intent to cause harm to themselves or to their child, but it is misrepresentation nonetheless and has a strong impact on the patient or family’s trust relationship with the medical providers. Suspicions of Medical Child Abuse sometimes arise when parents mislead medical professionals regarding diagnosis, previous treatments, symptoms, or involvement of other medical professionals, even if the parents harbored no intention of harming their child. It is therefore essential for parents to keep good records and convey accurate information to every medical provider at all times, for exaggeration (especially when intentional) can lead to far more significant problems if Medical Child Abuse allegations are later brought against the family. ## Advocating Tips provided by Johna and the Whale Foundation ### Protect Yourself - Never go to a doctor appointment alone. - Have the person going with you take notes on what is being discussed and who is in the room. - Never report the events of a previous doctor appointment. Instead ask the physician at hand to contact the previous doctor for a better understanding. - If possible, encourage your child to talk to the doctor about what he or she is experiencing and how often they experience it, to the best of their physical and mental ability. - When your child is in the hospital do your best to have others stay with your child periodically and have them take notes on everything that occurs while there. - If your child’s disability and/or disease is in question, always refer to it as suspected and NOT diagnosed. Better yet, if there is any question, do not answer. Instead refer the doctor to the physician or facility that brought it to your attention. (It is the physician’s responsibility to clarify and confirm-NOT YOURS! ### Protect Your Family - Never make a major medical decision about your child without the presence of your spouse, family member or even a trusted friend. - Always require copies of any written appointment report (it is your legal right). Review and make any corrections necessary to discrepancies that you observe in the report. Contact the office or facility and ask that the corrections be made immediately and a new report rendered so as to prevent a cascade effect of miscommunication between physicians and/or parents. - Do your best to involve third parties in your home life either through friends, neighbors, or even agencies to ensure that you have others observing the reported symptoms in your child. - Never be the only one caring for your child! Encourage your spouse to be more involved, and if a spouse is not an option, turn to friends, extended family, or even your local church. --- ### [MitoAction Newsletters](https://www.mitoaction.org/newsletters/) **Published:** March 4, 2020 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [May 2023](https://www.mitoaction.org/wp-content/uploads/2023/06/May-Newsletter.pdf) --- ### [Newsletter Confirmation](https://www.mitoaction.org/newsletters/newsletter-signup/newsletter-confirmation/) **Published:** December 4, 2022 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Welcome to MitoAction!** We have added you to our newsletter distribution list, so expect to receive the next edition of our newsletter. Please stay in touch and take advantage of all of the resources that we have at MitoAction: - [MyMito Mobile App](https://www.mitoaction.org/mitoaction_mobile/) – taking control of your care and helping us learn more about the journey with mito - [Weekly Support Calls](https://www.mitoaction.org/programs-support/weekly-support-calls/weekly-support-calls/) – Join us on Friday at 12:00 pm EST to talk about topics most important to you - [Monthly Expert Series](https://www.mitoaction.org/education/monthly-expert-series/) – Hear from leading experts in mito about diagnosis, research, treatment and more - Closed [Facebook Group](http://www.facebook.com/mitoaction) – Join our online community of support - And more! If there is any way the MitoAction team can support you, don’t hesitate to reach out to me at . ![](https://www.mitoaction.org/wp-content/uploads/2019/10/Signature-Kira-Mann-300x176.jpg) **Kira Mann** Chief Executive Officer kira@mitoaction.org 888-MITOACTION (888-648-6228) Cell: (248) 797-2399 --- ### [MitoAction Events](https://www.mitoaction.org/events/) **Published:** February 10, 2022 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # MitoAction Events ##### Join us to help raise awareness for mitochondrial diseases and critical funds to help mito patients, families and caregivers. MitoAction offers a wide range of events throughout the year, including fundraisers, awareness walks, conferences and more. Our main recurring MitoAction Events are listed below. To see what’s happening now, [check out our calendar](https://www.mitoaction.org/calendar/). ![MitoAction Events like the International Metabolic Conference help educate and inform patients, families and caregivers.](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-International-Metabolic-Conference-07-1200x600.jpg)#### International Metabolic Conference The IMC is free for patients, parents and caregivers, and is an opportunity to learn more about disease management, nutrition, and the latest research regarding FAODs. [Learn More](https://www.mitoaction.org/events/internationalmetabolicconference/) ![Sandra K. Russell Derby Day helps raise funds for vital MitoAction programs.](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Sandra-K.-Russell-Derby-Day-–-MitoAction-–-050424_MitoDerbyDay_Read-1082-1200x600.jpg)#### Sandra K. Russell Derby Day Derby Day is an annual fundraiser event and auction, which has raised over $1.6M for MitoAction programs, including sending mito kids to summer camp, fulfilling wish trips, and providing college scholarships. [Learn More](https://www.mitoaction.org/events/derbyday/) ![MitoAction Energy Walks have helped raise over $1.2 million for mito patients and families.](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Syracuse-Energy-Walk-–-MitoAction-–-STP_20240915_130-1200x600.jpg)#### MitoAction Energy Walks MitoAction Energy Walks raise awareness in the community and have helped raise over $1.2M towards improvident the lives of families affected by mitochondrial disease. [Learn More](https://www.mitoaction.org/events/energywalk/) ![The Matthew Harty Golf Tournament helps mito kids attend summer camp, go on wish trips, and go to college.](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-Matthew-Harty-Golf-Tournament-01-1200x600.jpg)#### Matthew Harty Golf Tournament This golf tournament is provides essential support for many MitoAction programs, including the Camper Fund, Scholarships and Wish Trips. [Learn More](https://www.mitoaction.org/events/matthew-harty-camper-fund-events/mhcfgolf/) ![MitoAction Events like the Matthew Harty Mito Classic help engage the broader community and raise awareness about mito and funds for patients mitochondrial diseases.](https://www.mitoaction.org/wp-content/uploads/2024/03/2023-Mito-Harty-Classic-4-1200x600.webp)#### Matthew Harty Mito Classic The MHMC is an annual street hockey tournament for middle and high school students, and helps raise money for Scholarships and the Matthew Harty Camper Fund. [Learn More](https://www.mitoaction.org/events/matthew-harty-camper-fund-events/mhmc/) --- ### [Privacy Policy](https://www.mitoaction.org/privacy-policy/) **Published:** September 26, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Online Privacy Policy** MitoAction thanks you for visiting our website. Our organization is committed to respecting your personal privacy while using this site. Please read the following policy to understand how the personal information we collect from you during your visit to our site will be treated as you make full use of the information provided. This policy may change from time to time so please check back for updates. **Collection of personal information** Personally identifiable information includes your name, address, zip code and telephone number, e-mail address or any other information which might reasonably be used to identify you individually. MitoAction collects personally identifiable information from website visitors only when it is voluntarily provided. MitoAction will not otherwise collect this information from you on our website. MitoAction offers the option of making tax deductible contributions with a credit card and will collect the information needed to make such transactions. At those portions of our Web site where we provide you with the option to input personally identifiable information, we notify you of the uses we intend to make of that information in any given instance. **How your personal information is used?** The information you provide to us in a feedback form, including any information or views in the comments section, will be used to learn more about the community of people we serve, to have a way of contacting you, via e-mail or regular mail, to provide you with information we believe may be of interest. It may also be used for compiling data and analyses to understand and serve your needs. Data is also compiled to evaluate the use and utility of the services we provide on line. Personally identifiable information will not be sold, rented or exchanged outside of MitoAction unless the user is first notified and expressly consents to such transfer. **Are “Cookies” used on this site?** A “cookie” is a small amount of data sent to your browser from a Web server which is stored on your computer’s hard drive and used to store or sometimes track information about your use of a site. For example, we might track information about the date and time visitors access our site, the type of web browser they used, and the websites from which they connected to our site. Our website collects this information by depositing certain bits of information called “cookies” in a visitor’s computer. This technology does not collect an individual visitor’s personally identifiable information; rather this information is collected in an aggregate form. The “cookies” can tell us how and when pages in a website were visited and by how many people. This aggregate information will enable us to improve our website to serve and inform you better. **Links to third party sites** As a resource to our visitors MitoAction may provide links to other websites. We try to carefully choose websites which we believe are useful and meet our high standards for the accuracy and utility of information. However, such sites are not within the control of MitoAction and may not follow the same privacy, security, or accessibility policies as the MitoAction web site. We suggest you check the privacy policies of those sites directly. **Removing Names from E-Mail & Mailing List** If you wish to stop receiving any e-mail or other communications from MitoAction, which might be sent to you in the future based on your request for this information, or if you have submitted personally identifiable information through a MitoAction website and would like to have that information deleted, please notify us at info@mitoaction.org and it will be done promptly. **Comments or Review** Thank you for visiting the MitoAction Web site. We value your interest and ideas. If you have any comments or concerns regarding the use of information provided by MitoAction please contact info@mitoaction.org. --- ### [Energy 4 Education](https://www.mitoaction.org/education/energy-4-education/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [EDUCATION](https://www.mitoaction.org/education/ "Education") # Energy 4 Education MitoAction’s goal is to assist parents and their child’s education team to better collaborate and creatively support children and teens living with mito disease. ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Energy-4-Education-Teens-in-a-High-School-Classroom-1024x683.webp) School success for children with mitochondrial disease begins with good communication by all involved parties, including school staff, parents, doctors, PT, OT, speech therapists, and the child when applicable. Clear and open communication increases understanding of how medical providers, parents, and educators can develop a plan which uses accommodations and modifications in school to support a child’s energy demand. This education focused section aims to improve a child’s success in school by helping parents and the education team to better collaborate and creatively support the child or teen with mitochondrial disease. To request a free copy of this presentation on DVD, send your request to . https://www.youtube.com/embed/3UTc1A7cG90 ## Energy 4 Education Resources ![](https://www.mitoaction.org/wp-content/uploads/2024/07/Young-boy-and-his-mother-meeting-with-a-doctor-1200x600.webp)#### Sample IEPs & Letters We’ve collected a series of templates that may be helpful for parents, educators and physicians who need to advocate for children with mito. [Learn More](https://www.mitoaction.org/education/energy-4-education/sample-ieps-letters/) ![](https://www.mitoaction.org/wp-content/uploads/2024/10/Toddler-Playing-with-Blocks-—-MitoAction-—-Energy-4-Education-1200x600.webp)#### Planning & Early Intervention A good plan for early development and preschool will help your family as well as your child as he or she attempts to reach basic milestones in development. [Learn More](https://www.mitoaction.org/education/energy-4-education/school-education/ages-0-3-preschool-and-early-intervention/) ![Preschool can be especially challenging for kids with mitochondrial diseases.](https://www.mitoaction.org/wp-content/uploads/2024/10/Young-Girl-in-Preschool-—-MitoAction-—-Energy-4-Education-1200x600.webp)#### Preschool Preschool can be especially challenging for mito kids, as they sometimes lag behind in milestones such as walking, sitting, talking, swallowing and self feeding. [Learn More](https://www.mitoaction.org/education/energy-4-education/school-education/ages-3-5-preschool/) ![](https://www.mitoaction.org/wp-content/uploads/2024/10/Young-Kids-in-Elementary-School-Classroom-Holding-Up-Their-Hands-—-MitoAction-—-Energy-4-Education-1200x600.webp)#### Elementary School As your child progresses each year so do the academic expectations of what the child will be held accountable to learn. [Learn More](https://www.mitoaction.org/education/energy-4-education/school-education/ages-5-10-elementary-school/) ![Middle School is a big change for most students. It can be especially challenging as they deal with changing classrooms and having different teachers throughout the day.](https://www.mitoaction.org/wp-content/uploads/2024/10/Kids-in-a-Middle-School-STEM-Class-—-MitoAction-—-Energy-4-Education-1200x600.webp)#### Middle School Middle School is a big change for most students, as they deal with changing classrooms and having different teachers throughout the day. [Learn More](https://www.mitoaction.org/education/energy-4-education/school-education/ages-11-14-middle-school/) ![High School brings new challenges for kids with mito and higher expectations from educators.](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Energy-4-Education-Teens-in-a-High-School-Classroom-1200x600.webp)#### High School High School brings new challenges for teenagers with mito and higher expectations from educators and adults. [Learn More](https://www.mitoaction.org/education/energy-4-education/school-education/ages-14-18-high-school-and-beyond/) ![Young girl sitting at her desk in elementary school. Elementary school presents unique challenges for kids with mitochondrial diseases and their parents.](https://www.mitoaction.org/wp-content/uploads/2024/10/Young-Girl-Sitting-at-Desk-in-Elementary-School-—-MitoAction-—-Energy-4-Education-1200x600.webp)#### Mito and the Education System Children with mito CAN attend school with supportive tools that can help a student maintain health and energy throughout the day. [Learn More](https://www.mitoaction.org/education/energy-4-education/school-education/) ![Home schooling can be a valid alternative for parents who are worried that public or private school systems don’t meet the needs of their mito child.](https://www.mitoaction.org/wp-content/uploads/2024/10/Dad-Home-Schooling-his-Child-with-Mitochondrial-Disease-—-MitoAction-—-Energy-4-Education-1200x600.webp)#### Home Schooling Home schooling can be a valid alternative for parents who are worried that public or private school systems don’t meet the needs of their mito child. [Learn More](https://www.mitoaction.org/education/energy-4-education/school-education/home-schooling/) ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-MitoSocials-Young-girl-and-her-mother-do-an-arts-and-crafts-project-1200x600.webp)#### Art Therapy Art is a powerful way to help combat depression and stress in children dealing with mito. [Learn More](https://www.mitoaction.org/education/energy-4-education/school-education/art-therapy/) --- ### [Sample IEP's & Letters](https://www.mitoaction.org/education/energy-4-education/sample-ieps-letters/) **Published:** July 18, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Energy 4 Education](https://www.mitoaction.org/planning-and-preparation/ "Back to Section") # Sample IEP’s & Letters These templates may be helpful for parents, educators and physicians who need to advocate for children with mito. ![](https://www.mitoaction.org/wp-content/uploads/2024/07/Young-boy-and-his-mother-meeting-with-a-doctor-1024x683.webp) Listed below, parents, educators and physicians can find samples and templates of commonly used documents that can aid mitochondrial disease-affected patients and families in advocating their concerns for educational supports. These documents were formulated with the best of intentions; and there may be some areas that do not apply to your child(ren). Please note that these documents are ONLY templates and that the content of the documents are formatted to facilitate discussions with primary care physicians, specialists, and educators. Use them at office visits or with school personnel to convey your child’s particular needs to have access to learning in the school environment. **It is IMPERATIVE that** each of these documents have the required signatures. Eligibility or Individual Health Plan documents need a physician’s signature. IEPs require a minimum of four signatures ( parent, administratrative authority, special education licensed teacher of record and a general education teacher). If the student is eligible for special services such as physical, occupational or speech therapy. If the student is 14 years of age or older, the IEP requires the student’s signature as well. If you have questions, contact MitoAction staff at this email: if you have any questions or concerns. These documents have legal significance and opportunity to thrive in the most supportive environment possible, both at home and in their school setting. MitoAction is committed to helping educators, teachers, and therapists in your community understand how mitochondrial disease might affect your child or teen, and to offer constructive ideas to help modify the school setting to best meet his or her needs. ### Tools for School Success - [Sample IEP](https://www.mitoaction.org/wp-content/uploads/2019/10/IEP-Kirsten-Casale-.pdf) (Individualized Education Plan) - [Sample Section 504](https://www.mitoaction.org/wp-content/uploads/2019/10/Sample-SECTION-504-Kirsten-Casale.pdf) - [Occupational Therapy recommendations](https://www.mitoaction.org/wp-content/uploads/2019/10/Understanding_mitochondrial_sensory_issues.pdf) - [Daily School Symptoms Checklist ](https://www.mitoaction.org/wp-content/uploads/2019/10/Daily-School-Symptom-Checklist-Kirsten-Casale.pdf) - [Technical Assistive Technologies](https://www.mitoaction.org/wp-content/uploads/2019/10/Technical-Assistive-Technologies-Kirsten-Casale.pdf) - [Academic Checklist for Strength and Needs when planning Educational goals ](https://www.mitoaction.org/wp-content/uploads/2019/10/Check-list-for-Strengths-and-Needs-Kristen-Casale.pdf) - [Sample Preschool Developmental Questionnaire](https://www.mitoaction.org/wp-content/uploads/2019/10/Preschool-Developmental-Questionnaire-Kirsten-Casale.pdf) - [OHI What is Other Health Impaired?](https://www.mitoaction.org/wp-content/uploads/2019/10/WHATisOHI-Kirsten-Casale.pdf) - [Neurological Testing](https://www.mitoaction.org/wp-content/uploads/2019/10/Why-are-neuropsychological-tests-necessary-Kirsten-Casale.pdf) (an explanation) - [Suggested Elementary School Accomodations for the child with Mito](https://www.mitoaction.org/wp-content/uploads/2019/10/Suggested-Accommodations-Modifications-in-the-Elementary-Classroom-Kirsten-Casale.pdf) - [Suggested Middle & High School Accomodations for the Student with Mito](https://www.mitoaction.org/wp-content/uploads/2019/10/Suggested-Accommodations-for-Middle-and-High-School-Students-Kirsten-Casale.pdf) - [Sample of Contents of an IFSP ](https://www.mitoaction.org/wp-content/uploads/2019/10/Sample-of-Contents-for-an-_IFSP-Individual-Family-Support-Plan-Kirsten-Casale.pdf)(Individualized Family Service Plan) - [Sample 504 Accommodations](https://www.mitoaction.org/wp-content/uploads/2019/10/Sample-SECTION-504-Kirsten-Casale.pdf) - [My Child needs an aide, how do I get one](https://www.mitoaction.org/wp-content/uploads/2019/10/My-child-with-Mito-needs-an-aide-how-do-I-obtain-one-Kirsten-Casale.pdf)? - [Debilitating Fatigue and School (letter)](https://www.mitoaction.org/wp-content/uploads/2019/10/Mitochondrial-Disease_-Debilitating-Fatigue_-School-Kirsten-Casale.pdf) - [Sample Letter for Schools and IEP Qualification using OHI](https://www.mitoaction.org/wp-content/uploads/2019/10/sample-IEP-for-OHI-2010-Kirsten-Casale.pdf) - [Sample Individual Health Care Plan](https://www.mitoaction.org/wp-content/uploads/2019/10/Sample-of-Individual-Health-Care-Plan-Kirsten-Casale.pdf) - [What is an Individualized Health Care Plan](https://www.mitoaction.org/wp-content/uploads/2019/10/What-is-an-Individualized-HealthCare-Plan-Kirsten-Casale.pdf)? - [What is an extended school year?](https://www.mitoaction.org/wp-content/uploads/2019/10/What-is-an-extended-school-year-Kirsten-Casale.pdf) - [What is a transitional IEP?](https://www.mitoaction.org/wp-content/uploads/2019/10/What-is-a-Transitional-IEP-Kirsten-Casale.pdf) - [Suggested Protocol to share with a School Nurse](https://www.mitoaction.org/wp-content/uploads/2019/10/suggested-medical-protocol-to-be-shared-with-school-nurse-revised.pdf) --- ### [Home Schooling](https://www.mitoaction.org/education/energy-4-education/school-education/home-schooling/) **Published:** September 24, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Energy 4 Education](https://www.mitoaction.org/education/energy-4-education/ "Back to Energy 4 Education") # Home Schooling Home schooling can be a valid alternative for parents who are worried that public or private school systems don’t meet the needs of their mito child. ![Home schooling can be a valid alternative for parents who are worried that public or private school systems don’t meet the needs of their mito child.](https://www.mitoaction.org/wp-content/uploads/2024/10/Dad-Home-Schooling-his-Child-with-Mitochondrial-Disease-—-MitoAction-—-Energy-4-Education-1024x683.webp) Parents at times feel they have exhausted all options within the school setting, but are not aware of the educational alternatives available to their Mito children. One of these alternatives is home schooling. Some parents of children with mitochondrial and other medical disorders feel their child(ren)’s needs cannot be met adequately by public or private school systems. They may also feel as though the medical care and supervision within the school settings are not acceptable to them. Other reasons that Mito parents choose to home school is that their child’s particular developmental and learning needs may not be able to be well-served by his school district. Just FYI, it is not necessary to have a degree in teaching to home school. So if you’re interested in home schooling your Mito child, please read on. ### Can Anyone Home School? Yes! Anyone can home school their children–it is legal in all states, although the regulations and requirements vary from town to town and state to state. Home schooling, also called Home Education (to distinguish it from the style of instruction typical of public schools), refers to educating one’s children outside of the public or private school setting. Every state has different laws regarding what a parent must do in order to home school. In some states, it is not necessary to even report that you are home schooling. In other states, there are strict regulations that include creating an Individualized Home Instruction Plan, and submitting quarterly and annual assessments. Not following the proper legal channels can result in a report to Child Protective Services for educational neglect, so make sure you find out the laws for your state. **Please note**: A possible issue that parents could face when they choose to home school with their school districts is the federal standard of educating in the “least restrictive environment.” The further you take a disabled child out of a standard classroom, the more “restrictive” it becomes, in direct opposition to IDEA. The district has the following order of preference under federal law: - A regular classroom; - A regular classroom with modifications and/or supplemental aids and services; - A resource room for special education instruction with instruction in a regular classroom; - A classroom for children with disabilities located in a regular school; - Day or residential special schools, where many or all students may have disabilities; and - A home-, hospital-, or institution-based program. You would also want to verify whether or not your child can still receive school-provided services such as occupational and speech therapies, depending on the laws in your state. You can home school a child of any age, even if you have no teaching experience yourself. For older children, such as high school students, some parents are more comfortable using an online, virtual school or other structured or accredited curriculum. Others enroll in community college courses. ### How Can Home Schooling Benefit my Mito Child? You get to monitor the health of your child, without having to rely on the teachers or classroom aides to provide care or report how your child is doing. - There is less exposure to viruses that could exacerbate a chronic condition. - You, as the parent, can determine how much “work: your child can handle before he becomes overly fatigued. You can adjust your program accordingly, and provide education in smaller, more manageable chunks, especially if your child fatigues easily. - It is MUCH easier to get a doctor’s appointment, and you can go during “off” hours. This also leads to lower germ exposure, since you can be in and out of the doctor’s office long before the kids get out of school. - You can visit museums, stores, and other public places during school hours when they are less crowded, thereby reducing your child’s risk of virus/germ exposure. - You can make sure your heat-intolerant child has an air-conditioned vehicle for transportation and an air-conditioned room at home that he can comfortably study in. ### Where Do I Start? - Join a home schooling support network in your area. Search the Internet. Check out Yahoo groups. You will most likely have no difficulty finding such a group in your area. - Join online support groups. There are home schooling curriculum support groups for just about everything you can think of; do a search on the Internet. - Search general home schooling sites on the Internet. - Read books about home schooling. - Go to your State Education Department’s website. It usually lists curriculum standards for each grade. The World Book site also has a nice standards breakdown. ### Some Thoughts to Consider: What are the General Benefits of Home schooling? - You, as the parent, have complete control of, and knowledge about what your child is learning. You can support him in his educational endeavors in ways you would not be able to while he is in school. - You can tailor your child’s education to fit his specific needs, and he can work at his own pace. - Lots of time for enrichment and other activities as your child will not have to share his time with multiple other students, including waiting in line, waiting for other students to finish, transitions between activities and tasks. - In addition, if your child develops an intense interest in a topic, he will have the time and opportunity to delve into it as deeply as he is able. Your child will not be limited by having to “move on” because the rest of the class is doing so. - Increased family time. Home schooling gives parents the opportunity to spend more time together. - Control over your own/your family’s schedule. Your family’s schedule is no longer determined by school expectations. This can be a serious consideration for families with medical issues. - Some states require that you report attendance to your school district, which means that you need to submit a record showing that your child has met the minimal attendance requirements. However, you can do this in whatever way works for your family, including summer education, weekends, or evenings. - Learning can take place anytime, anywhere. - The variety of approaches, methods, environments, and materials for home schooling is endless — with home schooling, you can choose whatever you find most appealing for you and your child, unlike the school system, where teachers are limited to specific topics, textbooks and materials. Remember just because your child has mitochondrial disease, there are always options available for him to succeed academically! ### Please view these additional resources for more information: - [Legalities-US regulations by state](http://homeschooling.about.com/cs/gettingstarted/a/legalusa.htm) - [Canadian Regulations](http://homeschooling.about.com/cs/supportgroups/a/hscanada.htm) - [Getting Started-Great reviews of products, considering parental time, learning styles](http://www.cathyduffyreviews.com/) - [OnlineSchools.org Guide for parents who are considering homeschooling](http://www.onlineschools.org/elementary-school/) - [Home School Magazine](http://www.thehomeschoolmagazine.com/Site_Map.php) - [Home School Legal Defense](https://hslda.org/content/) --- ### [Mito and the Education System](https://www.mitoaction.org/education/energy-4-education/school-education/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Energy 4 Education](https://www.mitoaction.org/education/energy-4-education/ "Back to Energy 4 Education") # Mito and the Education System Teachers, parents and students, with the guidance of the child’s physician, can work together as a team to promote the best learning experience possible for children with mito attending school. ![Young girl sitting at her desk in elementary school. Elementary school presents unique challenges for kids with mitochondrial diseases and their parents.](https://www.mitoaction.org/wp-content/uploads/2024/10/Young-Girl-Sitting-at-Desk-in-Elementary-School-—-MitoAction-—-Energy-4-Education-1024x683.webp) Children with mito CAN attend school with supportive tools that can help a student maintain health and energy throughout the day. Teachers, parents and students, with the guidance of the child’s physician, need to work together as a team to promote the best learning experience possible. MitoAction is thrilled to offer resources such as the [Energy 4 Education](https://www.mitoaction.org/education/energy-4-education/) video, as a means to help parents, students and educators understand and convey the many variabilities and complexities of educating a child with mitochondrial disease. Educators will truly appreciate the insights shared by students, families and other teachers who have established strong relationships while working together to make educational opportunities accessible. MitoAction also offers [Sample IEP’s and other templates](https://www.mitoaction.org/sample-ieps-letters/), symptom checklists, healthcare plans, etc., which may help you as a parent advocate for your child’s needs in their academic environment. Another very useful tool is our [MitoAction MyMito App](https://www.mitoaction.org/mitoaction_mobile/) that will allow every member of your child’s care team, including teachers, school nurses or counselors, to participate in a coordinated care environment and share meaningful information and updates about your child right from their phone. As always, these are possible options that can aid parents and teachers in understanding that children with mitochondrial disease do attend school, do suffer from extended absences and can have accommodated schedules,. When everyone communicates and works together, this enables our mito students to have successful school experiences with proper supports, accommodations and modifications throughout their academic careers. ### Additional Resources [Sample IEP Letters](https://www.mitoaction.org/education/energy-4-education/sample-ieps-letters/) [Home Schooling](https://www.mitoaction.org/education/energy-4-education/school-education/home-schooling/) [MyMito App](https://www.mitoaction.org/mitoaction_mobile/) [Energy 4 Education](https://www.mitoaction.org/education/energy-4-education/) [Advocating for Your Child at School – Global Genes Toolkit](https://www.mitoaction.org/wp-content/uploads/2023/03/GG_toolkit_educational-advocacy_web-hyperlinked.pdf) --- ### [Ages 0-3: Preschool and Early Intervention](https://www.mitoaction.org/education/energy-4-education/school-education/ages-0-3-preschool-and-early-intervention/) **Published:** March 21, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Energy for Education](https://www.mitoaction.org/education/energy-4-education/ "Back to Energy 4 Education") # Ages 0-3: Preschool and Early Intervention A good plan for early development and preschool will help your family as well as your child as he or she attempts to reach basic milestones in development. ![A good plan for early development and preschool will help your family as well as your child as he or she attempts to reach basic milestones in development. ](https://www.mitoaction.org/wp-content/uploads/2024/10/Toddler-Playing-with-a-Wooden-Train-—-MitoAction-—-Energy-4-Education-1024x683.webp) Education starts at birth. Between the ages of 0 and 3 years of age, putting the proper supports in place is a must. Knowing where to find them is not always as easy. So step one, understand what options are available to you and your child. At these ages you would want to learn about the following programs, which are often referred to as “Individual Family Service Plans” (IFSP) and/or “Early Intervention Plans.” Truly, the IFSP is supported by early intervention plans, but sometimes the two names are interchanged. These services are funded by the U.S. Department of Education’s Individuals with Disabilities Education Act, Part C. They are designed to meet the early intervention needs of your child , birth to 3, who qualify as an infant or toddler with either a developmental or physical disability. The regulations governing these services specifically include ***inborn errors of metabolism*** as a qualification criteria under physical or mental conditions that affect development. These programs will support your family as well as your child as he/she attempts to reach basic milestones in development. They will develop a plan to address the whole child’s educational needs to include: 1. Physical Development 2. Cognitive Development 3. Communication Development 4. Social or Emotional Development, and 5. Adaptive Development. When milestones within the above areas are not being reached, IFSP’s early intervention becomes a huge asset in aiding families to build strong educational foundations and building blocks. ![](https://www.mitoaction.org/wp-content/uploads/2024/10/Toddler-Playing-with-Blocks-—-MitoAction-—-Energy-4-Education-1024x683.webp)Below is a possible listing of newborn signs of mito, which could lead to the need for early interventions and the writing of an Individual Family Support Plan (IFSP) for support. Mito newborns can present with any of the following signs and symptoms from birth onward: - Seizures - Vomiting - Jaundice - Diarrhea - Failure to thrive - Abdominal bloating - Cyanosis - Difficulty sucking and swallowing - Hypothermia - Fevers with no known origins - Lethargy - Odd odor - Neurological issues - Lack of reflexes - Weakened levels of alertness - Dysmorphic features - Large liver or spleen - Hyperactivity - Irritability - Sepsis, SIDS, or syndrome like symptoms that present as “shock” These possible presentations of symptoms and a mitochondrial disease diagnosis have brought you here, where you, your family, and child will find support, both emotionally and educationally. As early intervention programs begin at birth, the support for your entire family through the establishment of an IFSP will be a valuable tool in aiding your family to obtain the necessary supports that you may need. Many other early interventions from technical access, to mobility options, and emotional support groups are offered and supported through your IFSP. It is very IMPORTANT to remember, that as your child reaches age 3, the IFSP will probably change status from an IFSP to an Individual Education Plan or IEP (covered underneath Part B of the Individuals with Disabilities Educational Act). Each individual state has the option of allowing children to remain in Part C coverage with an IFSP until the age of kindergarten, at the state’s discretion. However, you, as the parent, also have the option to refuse continued Early Intervention Services and insist that your child be considered for an IEP at any time beyond the age of 3. Many parents learn early on to never release or sign off of their child’s IFSP supports until the IEP has been established and qualified. With the 2004 reauthorization of IDEA, Part C coverage, the IFSP must include a transition plan to be initiated before the release from Early Intervention Services. This transition plan is designed to create a “seamless transition” between Part C coverage and Part B coverage and must include 1\) “steps for the child with the disability and his or her family to exit from the program” and 2)”any transition services needed by that child and his or her family” (§303.344h). Below are additional resources for early intervention: - [Getting Started with Early Intervention](https://www.babyhearing.org/language-learning/early-intervention) - [A Child Developmental Checklist: Find Out When Early Intervention Or Developmental Therapy May Be Needed](http://www.sensory-processing-disorder.com/child-developmental-checklist.html) - [Early Intervention Defined](https://www.parentcenterhub.org/ei-overview/) - [Early Intervention and Individual Family Service Plans](http://www.education.com/) - [Special Education Glossary](https://disabilityrightsfund.org/glossary/) --- ### [Ages 3-5: Preschool](https://www.mitoaction.org/education/energy-4-education/school-education/ages-3-5-preschool/) **Published:** March 21, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Back to Section Title](https://www.mitoaction.org/planning-and-preparation/ "Back to Section") # Ages 3-5: Preschool Preschool can be especially challenging for mito kids, as they sometimes lag behind in milestones such as walking, sitting, talking, swallowing and self feeding. ![Preschool can be especially challenging for kids with mitochondrial diseases.](https://www.mitoaction.org/wp-content/uploads/2024/10/Young-Girl-in-Preschool-—-MitoAction-—-Energy-4-Education-1024x683.webp) If your child participated in Early Educational Services for ages birth to 3, this is the typical time of transitioning from these Early Education Services monitored through the IFSP to more school-based services with an Individual Education Plan (IEP). However, as noted in the birth to 3 section, your state has the option of allowing children to remain in early education services with an IFSP until kindergarten age, at the state’s discretion. This can only be done with your consent as the parent. These services are covered under Part C Regulations of the Individuals with Disabilities Educational Act and are separate and distinct from the services provided through Part B Regulations of the Individuals with Disabilities Educational Act, which is provided to children ages 3 to 21. If your child did not need the Early Educational Services (birth to 3) and you are just beginning to inquire about services at the age of 3, then your child will begin services through the Individuals with Disabilities Educational Act, Part B and will begin with an assessment for – and educational diagnosis relevant for – the Individual Education Plan process (IEP). For the children who received the IDEA Part C coverage and IFSP, you will notice definite differences between IFSP’s and IEP’s. They are covered under different regulations and have their own specific guidelines. It is imperative for parents to understand federal and their own state laws that apply to IEP’s. Preschool aged children have many adventures ahead of them. When a Mito preschooler enters the education environment, often the following issues occur: Basic milestones of walking , sitting, talking, swallowing, self-feeding, and potty training may have not been attained, and as well possible learning disabilities may have occurred but not been evaluated as of yet. This will most probably be the first time your preschooler will take tests, being given and evaluated by a multidisciplinary team of professionals. This team may and should minimally include someone able to assess your child’s hearing, vision and general physical condition (a nurse or doctor), a speech/language pathologist and/or a psychologist to administer cognitive/developmental testing for your child, and you as the parent for historical information and current functioning information on your child for things not able to be elicited during the exam. This testing is a must for a child with Mito. This testing will allow educators, physicians, specialists and families to develop the necessary accommodations and modifications for future academic successes, based on your child’s needs. “Other Health Impairment” or “Developmentally Delayed” are two labels often used when qualifying a child for an IEP. Once a child has been through the assessment team process and has been given an appropriate educational label to receive services, then you, as the parent, must participate in the development of the IEP. You will again meet with a team of professionals to discuss your child. This team, with your input, will write a legally binding document that governs the education your child will receive for a period of up to one school year. The IEP must be redeveloped each and every year your child continues to need special education. This document will address: 1. Eligibility 2. Level of educational performance; for preschool children, this is a present description of how the disability impacts the child’s participation in age-appropriate activities 3. Accommodations and modifications necessary for your child to participate in the classroom 4. Annual, measurable and obtainable goals for your child’s education 5. Any supplementary services your child may need (i.e. speech, OT, PT, special transportation) 6. Projected dates of all services with frequency, location and duration stated ![Preschool kids during story time.](https://www.mitoaction.org/wp-content/uploads/2024/10/Preschool-Kids-During-Storytime-—-MitoAction-—-Energy-4-Education-1024x683.jpg)Many times a school district will present you with an already written IEP that was developed by the school team prior to your meeting. It is important to remember the document brought into the meeting is simply a draft and is able to be edited or changed as appropriate during, and/or after the meeting to become a mutually acceptable document for both you and your child’s school team. It is imperative that parents understand that they are not obligated to sign an IEP without proper time to review it, or if they are in disagreement with its content. Parents have the right to take the draft IEP home, review it, and sign it once they have had the time needed to understand all the information which it contains. **Check with your local state’s special education safeguards and protocol guidelines** as to how much time you have to reject or sign your child’s IEP. In most cases you have 10 to 30 days to either sign or reject the content, and if additional time is needed, you also have the right to reconvene the IEP team after the meeting is completed if you feel it is necessary to amend the document after signing at a later date. Placement and eligibility issues can arise, as there is often confusion as to how and where a child with mitochondrial disease will qualify for an IEP. Hopefully, by sharing this information parents and educators will begin to understand the eligibility options for placement of their Mito children. Often “Other Health Impaired (OHI),” or developmental delay, are used for qualifying a child with mitochondrial disease. Not to say that all Mito children will qualify in this manner, as there are other placement eligibility requirements that may qualify your Mito child for an IEP, but learning about qualifications and eligibility requirements is a must for parents, and their Mito children. Below are additional resources that will be helpful as you plan for the preschool years:. - [Glossary of terms](https://disabilityrightsfund.org/glossary/) - [IEP’s](http://specialed.about.com/cs/iep/a/ieparticle.htm) - [United States Education Department Index of Regular and Special Educational Needs](http://www.ed.gov/index.jhtml) - [Special Education Law](http://www.wrightslaw.com) - [U.S. Department of Education IDEA site](https://sites.ed.gov/idea/) --- ### [Ages 11-14: Middle School](https://www.mitoaction.org/education/energy-4-education/school-education/ages-11-14-middle-school/) **Published:** March 21, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Energy 4 Education](https://www.mitoaction.org/planning-and-preparation/ "Back to Section") # Ages 11-14: Middle School Middle School is a big change for most students. It can be especially challenging as they deal with changing classrooms and having different teachers throughout the day. ![Middle School is a big change for most students. It can be especially challenging as they deal with changing classrooms and having different teachers throughout the day.](https://www.mitoaction.org/wp-content/uploads/2024/10/Kids-in-a-Middle-School-STEM-Class-—-MitoAction-—-Energy-4-Education-1024x683.webp) This is a BIGGIE! The transition from elementary school to middle school is HUGE! For most students this will be their first adventure in changing classrooms, having a different teacher for each class, having choices about what classes to take, and emotionally struggling with becoming more “mature” as well as growing physically in leaps and bounds. Now add this to higher learning expectations and lots of homework! During the middle school years it is vitally important for your child to master his organizational skills as they will aid him immensley when he enters his high school years. Middle school Mito kids have many options available to them that will aid them in attaining academically. As the parent, you do not have to worry about learning new legal paperwork related to Section 504 or your child’s IEP. However, Mito issues often arise during the middle school years. Your child may experience: increased absences due to puberty and Mito symptoms and exposure to more illness, which also leads to more absences. At this stage, you must advocate for your child to receive all beneficial accommodations and modifications necessary for him to achieve educationally. Many times, the terms “accommodations” and “modifications” are used interchangeably. It is important to understand the difference between the two. **Accommodations** remove barriers to allow your child access to general education activities and tests. **Modifications** occur when an actual change to the curriculum simplifies the content for a student, typically by adjusting the level of material that is in question. For the Mito child who participates in regular education, you can expect accommodations to be on your IEP or Section 504 Plan. The National Center on Educational Outcomes has a state by state listing of allowable testing accommodations that may be available for your child. Typically, accommodations/modifications may be considered under the following categories: Instructional (to include materials, curriculum, methods and strategies) and Assessment (to include setting, timing, scheduling, presentation, response, and other needed accommodations). Some instructional accommodations to consider may include accommodated attendance times, need for flexible scheduling, and shortened assignments. Some testing accommodations to consider may include: frequent breaks, administer tests in the morning to minimize fatigue, orally present test directions and items to reduce eye strain and allow the student to respond in the testing booklet rather than answer sheet. Physiologically these are the years that will take additional energies as your child’s educational expectations as well as their emotional expectations are high stressors. Often vision impairments, fatigue, cramping, hearing issues and organizational/cognitive issues appear, but with Multidisciplinary Team Assessments and the proper IEP supports, education can still be fun and attained. As well, Technical Assistive Technologies, and Technical Access are truly beneficial in accommodating and modifying curriculum throughout the middle school years. Allowable technical access accommodations that may be allowed for your child during instruction could include tape recording teacher lessons or copying notes from a classmate to reduce fatigue with writing notes, using a word processor to type rather than write. Your child may need to have two sets of school textbooks so that he does not fatigue with carrying large text books between school and home. With the right tools, every student can attain educationally. Please view these additional resources: - [Middle school academic expectations, social emotional and developmental](http://www.education.com/grade/middle-school/) - [The National Center on Secondary Education and Transition’s publication on accommodations](http://www.ncset.org/publications/viewdesc.asp?id=247) - [IEPs and Common Core State Standards & Assessments](https://nceo.umn.edu/docs/OnlinePubs/AZpublications/ParentSpotlightIEPs.pdf) - [Council for Exceptional Children](https://exceptionalchildren.org/) --- ### [Ages 14-18: High School and Beyond](https://www.mitoaction.org/education/energy-4-education/school-education/ages-14-18-high-school-and-beyond/) **Published:** March 21, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Energy 4 Education](https://www.mitoaction.org/education/energy-4-education/ "Back to Energy 4 Education") # Ages 14-18: High School and Beyond High School brings new challenges for kids with mito and higher expectations from educators. ![High School brings new challenges for kids with mito and higher expectations from educators.](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Energy-4-Education-Teens-in-a-High-School-Classroom-1024x683.webp) Getting your teenager ready for challenging classes, making sure he pays attention to personal matters, teaching him to advocate for himself, as well as asking for extra help when it is needed are imperative actions for a high school student to learn. The real world suddenly enters the classroom, and all these new opportunities and choices are put before him. A decision that you must make with your child is whether he is going to attain a diploma or a certificate of completion after completing four years of traditional high school. Diploma types can vary from state to state and from student to student. Diploma type depends largely on the student’s unique abilities and performance. Students may receive standard diplomas, certifications of attendance/completion/achievement, IEP diplomas/Special Education diplomas, or occupational diplomas (in which a student has engaged in training to pursue an occupation post-graduate). You will want to check within your state and school district to find out what is required for your teenager to exit school with a diploma and the type of diploma that is expected to be achieved. Do understand that regardless of which type of diploma your teenager acquires, he will still be able to mark on a job application that he has graduated high school. Teachers’ expectations are the highest in these four years. They are stressing the basic foundations of academic success by asking your teenagers to use critical thinking skills, increase their reading and writing abilities, and lastly making them aware of the social changes that are occurring all over the world. Emotionally it is important that high school teenagers take these necessary steps so they are prepared to interact with their families and communities once they graduate. For support in understanding what academic and emotional/social expectations will be expected by the time your child graduates high school, visit the following links listed below. As your child nears his 16th birthday, he will have a new component written into the IEP – the Transition Plan. Your child is now invited to attend all IEP meetings to discuss his goals for life after graduation. It is not mandatory that he attends at this age, although it is highly recommended that he does. The school, with direction from the IEP, is now required to “facilitate the child’s movement from school to post-school activities,” as per IDEA 2004. Post-school activities include college, vocational training, integrated employment, adult education and/or services, independent living and community participation. Transition services are based on your child’s needs and may include: 1. Instruction 2. Related services 3. Community experiences 4. Development of employment and other post-school adult living objectives, and 5. If appropriate, acquisition of daily living skills and provision of a functional vocational evaluation. One area of the Transition Plan that is not typically identified and addressed with specific goals that is absolutely vital to the Mito child is the health component. In 2002 the American Academy of Pediatrics (AAP) published a position paper that guides your child’s health-care providers facilitate transition into the adult world. According to the AAP, there are four elements that are key to successful health transition: 1. Include healthcare providers along with other service providers in transition planning 2. Promote opportunities for youth to be active in their own health-care decision making 3. Parental support for giving youth more responsibility and independence (balancing the need for safety with the child’s need for independence); and 4. Continuity between pediatric and adult health-care providers. (NCSET.org Parent Brief). Focusing on the many medical needs of the Mito adolescent will allow the IEP team to address health needs within employment choices, college and independent living. As parents, you want to make sure that your high school child is in a safe learning environment, with skilled teachers and strong leaders, which will aid him to succeed academically. It is also very important to obtain “user-friendly information,” which are key pieces of information that should include a school’s graduation requirements, graduation and dropout rates, and student performance on state tests. Finally, preparing for college, filling out applications and waiting to hear where your child will go for his career choice or professional schooling are hallmarks of this stage. The pressures of a Mito high schooler are both emotional and educational. Attendance continues to be an issue, as well as the inability to attend daily for long periods of time without rest. Often IEP’s can support and accommodate high schoolers as they realize that they are nearing the end of one journey. Depending on the symptoms with which the Mito high schooler presents, fatigue, eye strain/vision issues, migraines, hormonal changes, body frailty due to increased academic stressors and emotional pressures can easily exacerbate symptoms that may have appeared dormant for a while. Again, with proper supports all is possible academically. Please view these additional resources: - [Developmental, social and academic expectations of high school students](http://www.education.com/grade/high-school/) - [Homework help sites for High School students](http://www.edinformatics.com/kids_teens/kt_homework.htm) - [College Board – National College Searching and College Testing Requirements](http://www.collegeboard.com/student/plan/action/juniors.html) - [The National Center on Secondary Education and Transition publication list](http://www.ncset.org/publications/default.asp#information). - [Transition Planning tips by Wright’s Law](http://www.wrightslaw.com/info/trans.plan.graham.htm) - [American Academy of Pediatrics](http://www.aap.org/) --- ### [Ages 5-10: Elementary School](https://www.mitoaction.org/education/energy-4-education/school-education/ages-5-10-elementary-school/) **Published:** March 21, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Energy 4 Education](https://www.mitoaction.org/education/energy-4-education/ "Energy 4 Education") # Ages 5-10: Elementary School It is really important to remember throughout elementary school that as the child progresses each year so do the academic expectations of what the child will be held accountable to learn. ![Young girl sitting at her desk in elementary school. Elementary school presents unique challenges for kids with mitochondrial diseases and their parents.](https://www.mitoaction.org/wp-content/uploads/2024/10/Young-Girl-Sitting-at-Desk-in-Elementary-School-—-MitoAction-—-Energy-4-Education-1024x683.webp) First grade through fifth grade are more commonly known as the Elementary School Years. We are now at step three – Welcome to Elementary School! If your mito child had a half-day of kindergarten, the full school day of elementary school may be extremely exhausting. It is really important to remember throughout elementary school that as the child progresses each year so do the academic expectations of what the child will be held accountable to learn. Elementary school children will need to expend high levels of energy to reach grade-appropriate academic goals. #### When Elementary Children With Mito Enter First Grade You Can Expect: - Increased overall fatigue as the school day is longer - Vision issues may become apparent as the “visual” learner is taking in enormous amounts of visual information, such as reading - Auditory issues tend to also become more prevalent as all areas of the child’s body are now fighting and using energy to “keep up” with their peers - Hand, arm, foot, leg cramping and spasming can occur as it takes a lot of energy to write, stand in line, write on the chalkboard, sit at a desk for full days. As a result, tech access may come into the picture again As an elementary school child attempts longer days, higher educational expectations, and more energy usage, this is when the IEP can aid a mito child in accommodations and modifications to lessen the energy expenditures but allow him to stay academically current with his peers. ![](https://www.mitoaction.org/wp-content/uploads/2024/10/Young-Kids-in-Elementary-School-Classroom-Holding-Up-Their-Hands-—-MitoAction-—-Energy-4-Education-1024x683.webp)Additionally, this is the level in which a Section 504 Plan may first become accessible to you. Section 504 is a part of the 1973 Rehabilitation Act and Title II of the Americans with Disabilities Act (ADA). It is designed to enable children with disabilities access to public education. A Section 504 plan will assist in providing school accommodations for your child with Mito. Eligibility for protections under Section 504 depends on the child in question having a physical or mental impairment that must substantially limit at least one major life activity. Major life activities include walking, seeing, hearing, speaking, breathing, learning, reading, writing, performing math calculations, working, caring for oneself, and performing manual tasks. As you see, many activities are included under this category. The question that must be addressed by the school’s special education team is whether the child has an “impairment” that “substantially limits one or more major life activities.” A Section 504 is an option for children who simply need minor accommodations to be able to participate in the general educational classroom. Under Section 504, accommodations will be established for your Mito child and will be written to your child’s specific needs. These are some of the considerations that may need to be made for your child. - **Temperature**. Does the child need to be in an air-conditioned environment or kept inside from recess in extreme temperatures? - **Fatigue.** Does the child need to be allowed a rest period in the day or take tests early in the morning before he fatigues? - **Diet.** Does your child need a special diet or the ability to snack at certain points of the day? - **Muscle cramps**. Does the child need to be allowed to stand or move around when experiencing muscular pain? - Other considerations to remember include assistive technology, removing communication or architectural barriers and other aids, and services necessary. Please remember that a Section 504 student may have a disability, but he doesn’t necessarily qualify for special education services. It can be a temporary condition, like an arm is in a cast with which the child writes, and they need accommodations, or an ongoing medical issue such as diabetes that doesn’t affect his learning, but requires accommodations such as a scribe because they cannot write for themselves due to their injury or eating at certain times to control their diabetes. It is vitally important to remember that a 504 plan only allows the student to have accommodations and not modifications like an IEP. Modifications occur when an actual change to the curriculum simplifies the content for a student. Remember also, that just because a student has an IEP this doesn’t mean that he has to be in a special education classroom. Only students who have qualified for an IEP program can receive support by the special education department in their school. It is important to remember that Section 504 is a federal civil rights law. The purpose of Section 504 is to protect persons with disabilities against discrimination for reasons related to their disabilities. Unlike IDEA, Section 504 does not guarantee that a child with a disability will receive an individualized educational program that is designed to meet the child’s individual educational needs. Nor does Section 504 require a meeting before a change in placement occurs as does an IEP. Please view these additional websites for more information! - [Online reading activities for the early reader](http://www.starfall.com) - [Ultimate Guide to Reading Comprehension](http://www.supersummary.com/reading-comprehension-guide/) - [Understanding the differences between IDEA and Section 504](http://www.ldonline.org/article/6086) --- ### [Art Therapy](https://www.mitoaction.org/education/energy-4-education/school-education/art-therapy/) **Published:** May 11, 2020 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Energy 4 Education](https://www.mitoaction.org/education/energy-4-education/ "Back to Energy 4 Education") # Art Therapy Art is a powerful way to help combat depression and stress in children dealing with mito. ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-MitoSocials-Young-girl-and-her-mother-do-an-arts-and-crafts-project-1024x683.webp) *This content has been provided by Katlyn Perkins* ### Teaching A Child With Mito To Draw Pharmacological and metabolic interventions, endurance training, and toxic compound scavenging are just a few approaches currently used to tackle mito, yet one approach that is far less prevalent in recent studies, is artistic creation. Most therapies are focused on increasing ATP levels, but it is also vital to tackle mito from a psychological perspective. [As stated in a 2018 study](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5997778/) published in Frontiers in Neuroscience, there is a strong link between mitochondrial diseases and depression: “Alterations in mitochondrial functions such as oxidative phosphorylation (OXPHOS) and membrane polarity, which increase oxidative stress and apoptosis, may precede the development of depressive symptoms.” Art, found in many studies to effectively reduce depression, may be of aid to kids with mito who wish to find the motivation required to embrace different therapies with greater zeal. ### Art Therapy And Depression Your child may find hobbies other than drawing or painting more interesting, but encouraging them to enjoy a couple of artistic sessions a week can help them battle depression. A 2016 Drexel University study found that making art at any level significantly [reduced levels of cortisol](https://www.tandfonline.com/doi/full/10.1080/07421656.2016.1166832) – a stress hormone known as a trigger for anxiety and depression. The researchers reported that although creativity exists in everyone, they expected “that perhaps the effects would be stronger for those with prior experience.” Their results proved their hypothesis wrong – beginners and more advanced artists alike benefited greatly from just one 45-minute art making session. The participants in the study described the experience as relaxing and anxiety-relieving. ### Where Should You Begin? If you are into the arts yourself, then you may already be a whiz at aspects such as shade, light, perspective and proportion. If, on the other hand, these have always been a challenge to you, start out with beginners’ drawing guides, focusing on subjects your child will love. Kids are naturally drawn to flowers and animals, so they [can learn to sketch a parrot](https://easydrawingguides.com/how-to-draw-a-bird/), a toucan, or other colorful birds [that will attract them](https://www.sciencedaily.com/releases/2017/01/170129111001.htm) with their vibrant colors. To draw a bird, you essentially need to create a round sphere for the head, an almond shape for the body, and a simple tail and wing. Of course, birds are just one animal to select; your child might ask to draw the family dog or any other furry or feathered creature they fancy. ### Trying Out Art Therapy Art therapy is currently used in a variety of settings to battle stress and to encourage children to communicate. If you notice your child takes to art like a duck to water, art therapy might help them reach their full potential. A 2017 study published in the [Canadian Art Therapy Association Journal](https://www.tandfonline.com/doi/full/10.1080/08322473.2017.1375827) showed that although coloring books can [help boost the mood](http://bereketlearning.blogspot.com/2010/01/why-do-i-love-drawing.html) and create a better sense of calm, drawing with an art therapist leading the session can result “in more empowerment, creativity and improved mood, which are significant for individuals striving to improve their quality of life and make lasting change.” Art has been found in many studies to be a powerful way to battle stress. Because people with mito can be battling depression concurrently, it is important to find pastimes that can reduce stress in a natural yet powerful way. Art — whether carried out as a hobby or as part of therapy — can help lower stress, and also improve communication and cause greater mood improvements. --- ### [International Metabolic Conference Attendee Survey](https://www.mitoaction.org/international-metabolic-conference-attendee-survey/) **Published:** July 18, 2023 **Author:** Hilary Romkey --- ### [Glossary of Medical Terms](https://www.mitoaction.org/glossary/) **Published:** November 4, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The preview of this block is limited for performance reasons. Check out the editor's full page preview if you have more than 30 terms to display. [a](#glossary-a)bcdefghijklmnopqrstuvwxyz a- [Abdominal aortic aneurysm](https://www.mitoaction.org/glossary/abdominal-aortic-aneurysm/) - [Abdominal bruit](https://www.mitoaction.org/glossary/abdominal-bruit/) - [Accommodations](https://www.mitoaction.org/glossary/accommodations/) - [Accommodations for disabilities, school and work](https://www.mitoaction.org/glossary/accommodations-for-disabilities-school-and-work/) - [Addison's Disease](https://www.mitoaction.org/glossary/addisons-disease/) - [Addison's Disease (Adrenal Insufficiency)](https://www.mitoaction.org/glossary/addisons-disease-adrenal-insufficiency/) - [Adenosine triphosphate (ATP)](https://www.mitoaction.org/glossary/adenosine-triphosphate-atp/) - [Adenovirus](https://www.mitoaction.org/glossary/adenovirus/) - [Age related Macular Degeneration](https://www.mitoaction.org/glossary/age-related-macular-degeneration/) - [Age related Macular Degeneration (AMD)](https://www.mitoaction.org/glossary/age-related-macular-degeneration-amd/) - [Alpers Disease](https://www.mitoaction.org/glossary/alpers-disease-2/) - [Alpers Disease](https://www.mitoaction.org/glossary/alpers-disease/) - [Alpha lipoic acid](https://www.mitoaction.org/glossary/alpha-lipoic-acid/) - [Alpha tocotrienol](https://www.mitoaction.org/glossary/alpha-tocotrienol/) - [Amniotic fluid](https://www.mitoaction.org/glossary/amniotic-fluid-2/) - [Amniotic fluid](https://www.mitoaction.org/glossary/amniotic-fluid/) - [Amyotrophic lateral sclerosis](https://www.mitoaction.org/glossary/amyotrophic-lateral-sclerosis/) - [Amyotrophic lateral sclerosis (ALS; Lou Gehrig's disease)](https://www.mitoaction.org/glossary/amyotrophic-lateral-sclerosis-als-lou-gehrigs-disease/) - [Anemia](https://www.mitoaction.org/glossary/anemia/) - [Angelman Syndrome](https://www.mitoaction.org/glossary/angelman-syndrome/) - [Anhidrosis](https://www.mitoaction.org/glossary/anhidrosis/) - [Ankylosing Spondylitis](https://www.mitoaction.org/glossary/ankylosing-spondylitis/) - [Ankylosing Spondylitis AS)](https://www.mitoaction.org/glossary/ankylosing-spondylitis-as/) - [Antagonistic pleiotropy](https://www.mitoaction.org/glossary/antagonistic-pleiotropy/) - [Antagonistic pleiotropy](https://www.mitoaction.org/glossary/antagonistic-pleiotropy-2/) - [Antibody](https://www.mitoaction.org/glossary/antibody/) - [Antigen](https://www.mitoaction.org/glossary/antigen/) - [Antinuclear Antibodies](https://www.mitoaction.org/glossary/antinuclear-antibodies-2/) - [Antinuclear Antibodies](https://www.mitoaction.org/glossary/antinuclear-antibodies/) - [Antinuclear Antibodies (ANA)](https://www.mitoaction.org/glossary/antinuclear-antibodies-ana/) - [Abdominal aortic aneurysm](https://www.mitoaction.org/glossary/abdominal-aortic-aneurysm/) - [Abdominal bruit](https://www.mitoaction.org/glossary/abdominal-bruit/) - [Accommodations](https://www.mitoaction.org/glossary/accommodations/) - [Accommodations for disabilities, school and work](https://www.mitoaction.org/glossary/accommodations-for-disabilities-school-and-work/) - [Addison’s Disease](https://www.mitoaction.org/glossary/addisons-disease/) - [Addison’s Disease (Adrenal Insufficiency)](https://www.mitoaction.org/glossary/addisons-disease-adrenal-insufficiency/) - [Adenosine triphosphate (ATP)](https://www.mitoaction.org/glossary/adenosine-triphosphate-atp/) - [Adenovirus](https://www.mitoaction.org/glossary/adenovirus/) - [Age related Macular Degeneration](https://www.mitoaction.org/glossary/age-related-macular-degeneration/) - [Age related Macular Degeneration (AMD)](https://www.mitoaction.org/glossary/age-related-macular-degeneration-amd/) - [Alpers Disease](https://www.mitoaction.org/glossary/alpers-disease-2/) - [Alpers Disease](https://www.mitoaction.org/glossary/alpers-disease/) - [Alpha lipoic acid](https://www.mitoaction.org/glossary/alpha-lipoic-acid/) - [Alpha tocotrienol](https://www.mitoaction.org/glossary/alpha-tocotrienol/) - [Amniotic fluid](https://www.mitoaction.org/glossary/amniotic-fluid-2/) - [Amniotic fluid](https://www.mitoaction.org/glossary/amniotic-fluid/) - [Amyotrophic lateral sclerosis](https://www.mitoaction.org/glossary/amyotrophic-lateral-sclerosis/) - [Amyotrophic lateral sclerosis (ALS; Lou Gehrig’s disease)](https://www.mitoaction.org/glossary/amyotrophic-lateral-sclerosis-als-lou-gehrigs-disease/) - [Anemia](https://www.mitoaction.org/glossary/anemia/) - [Angelman Syndrome](https://www.mitoaction.org/glossary/angelman-syndrome/) - [Anhidrosis](https://www.mitoaction.org/glossary/anhidrosis/) - [Ankylosing Spondylitis](https://www.mitoaction.org/glossary/ankylosing-spondylitis/) - [Ankylosing Spondylitis AS)](https://www.mitoaction.org/glossary/ankylosing-spondylitis-as/) - [Antagonistic pleiotropy](https://www.mitoaction.org/glossary/antagonistic-pleiotropy/) - [Antagonistic pleiotropy](https://www.mitoaction.org/glossary/antagonistic-pleiotropy-2/) - [Antibody](https://www.mitoaction.org/glossary/antibody/) - [Antigen](https://www.mitoaction.org/glossary/antigen/) - [Antinuclear Antibodies](https://www.mitoaction.org/glossary/antinuclear-antibodies/) - [Antinuclear Antibodies](https://www.mitoaction.org/glossary/antinuclear-antibodies-2/) - [Antinuclear Antibodies (ANA)](https://www.mitoaction.org/glossary/antinuclear-antibodies-ana/) - [Antiproliferative](https://www.mitoaction.org/glossary/antiproliferative/) - [Antispasmodic](https://www.mitoaction.org/glossary/antispasmodic/) - [Antispasmodics](https://www.mitoaction.org/glossary/antispasmodics/) - [Apoptosis](https://www.mitoaction.org/glossary/apoptosis/) - [Apraxia of Speech](https://www.mitoaction.org/glossary/apraxia-of-speech/) - [Ascorbic Acid](https://www.mitoaction.org/glossary/ascorbic-acid/) - [Asparagine](https://www.mitoaction.org/glossary/asparagine/) - [Asparagine](https://www.mitoaction.org/glossary/asparagine-2/) - [AST/ALT](https://www.mitoaction.org/glossary/ast-alt/) - [Ataxia](https://www.mitoaction.org/glossary/ataxia/) - [Audiology](https://www.mitoaction.org/glossary/audiology/) - [Autoimmunity](https://www.mitoaction.org/glossary/autoimmunity/) - [Autonomic Dysreflexia](https://www.mitoaction.org/glossary/autonomic-dysreflexia/) - [Autosomal dominant](https://www.mitoaction.org/glossary/autosomal-dominant/) - [Autosomal dominant (AD) inheritance](https://www.mitoaction.org/glossary/autosomal-dominant-ad-inheritance/) - [Autosomal recessive](https://www.mitoaction.org/glossary/autosomal-recessive/) - [Autosomal recessive (AR) inheritance](https://www.mitoaction.org/glossary/autosomal-recessive-ar-inheritance/) - [B- type Natriuretic peptide](https://www.mitoaction.org/glossary/b-type-natriuretic-peptide/) - [B- type Natriuretic peptide](https://www.mitoaction.org/glossary/b-type-natriuretic-peptide-2/) - [B- type Natriuretic peptide (BNP, NT-ProBNP)](https://www.mitoaction.org/glossary/b-type-natriuretic-peptide-bnp-nt-probnp/) - [Baclofen](https://www.mitoaction.org/glossary/baclofen/) - [BARTH syndrome](https://www.mitoaction.org/glossary/barth-syndrome/) - [Basal Ganglia](https://www.mitoaction.org/glossary/basal-ganglia/) - [Basal Ganglia](https://www.mitoaction.org/glossary/basal-ganglia-2/) - [Behcet’s Syndrome](https://www.mitoaction.org/glossary/behcets-syndrome/) - [Bicarbonate](https://www.mitoaction.org/glossary/bicarbonate/) - [Bicitra](https://www.mitoaction.org/glossary/bicitra/) - [Bicitra (sodium citrate)](https://www.mitoaction.org/glossary/bicitra-sodium-citrate/) - [Bilious Vomit](https://www.mitoaction.org/glossary/bilious-vomit/) - [Bilirubin](https://www.mitoaction.org/glossary/bilirubin/) - [Biomarker](https://www.mitoaction.org/glossary/biomarker/) - [BiPAP (Bilevel Positive Airway Pressure) ventilation](https://www.mitoaction.org/glossary/bipap-bilevel-positive-airway-pressure-ventilation/) - [BiPAP Machine](https://www.mitoaction.org/glossary/bipap-machine/) - [Blood Gases Test](https://www.mitoaction.org/glossary/blood-gases-test/) - [Borderline low plasma Alpha Amino Acid Butyric Acid](https://www.mitoaction.org/glossary/borderline-low-plasma-alpha-amino-acid-butyric-acid/) - [Bradycardia](https://www.mitoaction.org/glossary/bradycardia/) - [C-Diff](https://www.mitoaction.org/glossary/c-diff/) - [C-Diff (Clostridioides difficile)](https://www.mitoaction.org/glossary/c-diff-clostridioides-difficile/) - [c16 Palmitate](https://www.mitoaction.org/glossary/c16-palmitate/) - [Cachexia](https://www.mitoaction.org/glossary/cachexia/) - [Cardiac Arrhythmia](https://www.mitoaction.org/glossary/cardiac-arrhythmia/) - [Cardiac Arrhythmia (Irregular heartbeat)](https://www.mitoaction.org/glossary/cardiac-arrhythmia-irregular-heartbeat/) - [Cardiology](https://www.mitoaction.org/glossary/cardiology/) - [Cardiomyopathy](https://www.mitoaction.org/glossary/cardiomyopathy-2/) - [Cardiomyopathy](https://www.mitoaction.org/glossary/cardiomyopathy/) - [Cardiopulmonary Exercise test](https://www.mitoaction.org/glossary/cardiopulmonary-exercise-test/) - [Cardiopulmonary Exercise test](https://www.mitoaction.org/glossary/cardiopulmonary-exercise-test-2/) - [Cardiopulmonary Exercise test (CPET)](https://www.mitoaction.org/glossary/cardiopulmonary-exercise-test-cpet/) - [Carnitine Palmitoyltransferase Deficiency](https://www.mitoaction.org/glossary/carnitine-palmitoyltransferase-deficiency/) - [Carnitine Palmitoyltransferase Deficiency](https://www.mitoaction.org/glossary/carnitine-palmitoyltransferase-deficiency-2/) - [Carrier](https://www.mitoaction.org/glossary/carrier/) - [Carrier (of disease-causing mutation)](https://www.mitoaction.org/glossary/carrier-of-disease-causing-mutation/) - [Cecostomy](https://www.mitoaction.org/glossary/cecostomy/) - [Cecostomy Tube surgery](https://www.mitoaction.org/glossary/cecostomy-tube-surgery/) - [Cecostomy Tube surgery](https://www.mitoaction.org/glossary/cecostomy-tube-surgery-2/) - [Cellular Viability](https://www.mitoaction.org/glossary/cellular-viability/) - [Central Line](https://www.mitoaction.org/glossary/central-line/) - [Central Line (Central venous catheter](https://www.mitoaction.org/glossary/central-line-central-venous-catheter/) - [Ceramide levels](https://www.mitoaction.org/glossary/ceramide-levels/) - [Ceramide levels](https://www.mitoaction.org/glossary/ceramide-levels-2/) - [Cerebrospinal fluid](https://www.mitoaction.org/glossary/cerebrospinal-fluid-2/) - [Cerebrospinal fluid](https://www.mitoaction.org/glossary/cerebrospinal-fluid/) - [Cerebrospinal fluid (CSF)](https://www.mitoaction.org/glossary/cerebrospinal-fluid-csf/) - [Ceruloplasmin](https://www.mitoaction.org/glossary/ceruloplasmin/) - [Ceruloplasmin](https://www.mitoaction.org/glossary/ceruloplasmin-2/) - [Charcot-Marie Tooth Disease](https://www.mitoaction.org/glossary/charcot-marie-tooth-disease/) - [Charcot-Marie Tooth Disease](https://www.mitoaction.org/glossary/charcot-marie-tooth-disease-2/) - [Charcot-Marie Tooth Disease (CMTD)](https://www.mitoaction.org/glossary/charcot-marie-tooth-disease-cmtd/) - [Chiari Malformation](https://www.mitoaction.org/glossary/chiari-malformation/) - [Choline](https://www.mitoaction.org/glossary/choline/) --- ### [New Patient Kit](https://www.mitoaction.org/education/new-patient-kit/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Education](https://www.mitoaction.org/planning-and-preparation/ "Back to Section") # New Patient Kit Download a New Patient Kit or order one by mail to get important information about mito diseases, diagnosis and treatment. ![Download a MitoAction New Patient Kit or order one by mail to get important information about mito diseases, diagnosis and treatment.](https://www.mitoaction.org/wp-content/uploads/2024/10/Young-Man-Looking-at-New-Patient-Toolkit-—-MitoAction-—-New-Patient-Toolkit-1024x683.webp) Our New Patient Kits are available online or by mail, and they provide important information about diseases, diagnosis and treatment. They also provide descriptions of our organization, programs, and events which can help you on your healthcare journey. [New Patient Kit for Mito](https://www.mitoaction.org/education/new-patient-kit/new-patient-kit-for-mito/) [New Patient Kit for FAOD](https://www.mitoaction.org/education/new-patient-kit/new-patient-kit-for-faod/) --- ### [DEI Project Signup](https://www.mitoaction.org/dei-project-signup/) **Published:** June 26, 2024 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ## DEI Study Signup Sign up for MitoAction’s study, which is being conducted in partnership with the Chan Zuckerberg Foundation, to better understand the rare disease experience for patients and families of color. "\*" indicates required fields Facebook This field is for validation purposes and should be left unchanged. Name\* First Last Email\* Phone Address Street Address City StateAlabamaAlaskaAmerican SamoaArizonaArkansasCaliforniaColoradoConnecticutDelawareDistrict of ColumbiaFloridaGeorgiaGuamHawaiiIdahoIllinoisIndianaIowaKansasKentuckyLouisianaMaineMarylandMassachusettsMichiganMinnesotaMississippiMissouriMontanaNebraskaNevadaNew HampshireNew JerseyNew MexicoNew YorkNorth CarolinaNorth DakotaNorthern Mariana IslandsOhioOklahomaOregonPennsylvaniaPuerto RicoRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUtahU.S. Virgin IslandsVermontVirginiaWashingtonWest VirginiaWisconsinWyomingArmed Forces AmericasArmed Forces EuropeArmed Forces Pacific State ZIP Code EthnicityCaucasianAfrican AmericanLatino or HispanicAsianSoutheast AsianNative AmericanNative Hawaiian or Pacific IslanderTwo or MoreOther/UnknownPrefer not to state Primary LanguageArabicEnglishSpanishBengaliBhojpuriChinese- MandarinChinese – Wu or ShanghaineseChinese – Yue or CantoneseFrenchGermanGujaratiHausaHindiIgboItalianJapaneseKoreanMarathiPersian IranianPortuguesePunjabiRussianTagalogTamilTeluguTurkishUkrainianUrduVietnameseOther Genderman/boywoman/girltransgendernon-binaryagendergender non-conforminggender fluidgenderqueertwo spiritothernone of theseprefer not to state Pronounhe/him/hisshe/her/hersthey/them/theirve/ver/visxe/xem/xyrze/zie What is your connection to mito?\* Patient Parent Spouse Caregiver Son Daughter Sibling Grandparent Grandchild Aunt Uncle Cousin Niece Nephew Friend Teacher/Educator Medical Professional Physician Nurse Genetic Counselor Social Worker Researcher Industry Rep Other Diagnosis TypeGenetically ConfirmedClinical DiagnosisUndiagnosed What is your diagnosis? Alpers’ Disease ACAD9 Deficiency Autosomal Dominante Optic Atrophy (ADOA) Barth Syndrome CACT Deficiency CPEO Complex I Deficiency Complex II Deficiency Complex III Deficiency Complex IV Deficiency Complex V Deficiency CoQ10 Deficiency CPT I Deficiency CPT II Deficiency Creatine Deficiency Syndrome CUD/Primary Carnitine Deficiency Friedreich’s Ataxia GAII/MADD Deficiency Kearns-Sayre Syndrome (KSS) Lactic Acidosis LCHAD Deficiency Leigh Syndrome Leukodystrophy LHON LHON Plus Luft Disease MCAD Deficiency MCKAT Deficiency MELAS MEPAN MERRF MIRAS Mitochondrial Cytophy Mitochondrial DNA Depletion Mitochondrial Encencephalopathy Mitochondrial Myopathy MNGIE M/SCHAD Deficiency MMDS NARP Pearson Syndrome POLG Mutations POLG 2 Primary Mitochondrial Myopathy Pyruvate Carboxylase Deficiency Pyruvate Dehydrogenase Deficiency PDCD SCAD Deficiency Thymidine Kinase 2 Deficiency (TK2) VLCAD Deficiency Undiagnosed Other What is your child's diagnosis? Alpers’ Disease ACAD9 Deficiency Autosomal Dominante Optic Atrophy (ADOA) Barth Syndrome CACT Deficiency CPEO Complex I Deficiency Complex II Deficiency Complex III Deficiency Complex IV Deficiency Complex V Deficiency CoQ10 Deficiency CPT I Deficiency CPT II Deficiency Creatine Deficiency Syndrome CUD/Primary Carnitine Deficiency Friedreich’s Ataxia GAII/MADD Deficiency Kearns-Sayre Syndrome (KSS) Lactic Acidosis LCHAD Deficiency Leigh Syndrome Leukodystrophy LHON LHON Plus Luft Disease MCAD Deficiency MCKAT Deficiency MELAS MEPAN MERRF MIRAS Mitochondrial Cytophy Mitochondrial DNA Depletion Mitochondrial Encencephalopathy Mitochondrial Myopathy MNGIE M/SCHAD Deficiency MMDS NARP Pearson Syndrome POLG Mutations POLG 2 Primary Mitochondrial Myopathy Pyruvate Carboxylase Deficiency Pyruvate Dehydrogenase Deficiency PDCD SCAD Deficiency Thymidine Kinase 2 Deficiency (TK2) VLCAD Deficiency Undiagnosed Other What is your loved one's diagnosis? Alpers’ Disease ACAD9 Deficiency Autosomal Dominante Optic Atrophy (ADOA) Barth Syndrome CACT Deficiency CPEO Complex I Deficiency Complex II Deficiency Complex III Deficiency Complex IV Deficiency Complex V Deficiency CoQ10 Deficiency CPT I Deficiency CPT II Deficiency Creatine Deficiency Syndrome CUD/Primary Carnitine Deficiency Friedreich’s Ataxia GAII/MADD Deficiency Kearns-Sayre Syndrome (KSS) Lactic Acidosis LCHAD Deficiency Leigh Syndrome Leukodystrophy LHON LHON Plus Luft Disease MCAD Deficiency MCKAT Deficiency MELAS MEPAN MERRF MIRAS Mitochondrial Cytophy Mitochondrial DNA Depletion Mitochondrial Encencephalopathy Mitochondrial Myopathy MNGIE M/SCHAD Deficiency MMDS NARP Pearson Syndrome POLG Mutations POLG 2 Primary Mitochondrial Myopathy Pyruvate Carboxylase Deficiency Pyruvate Dehydrogenase Deficiency PDCD SCAD Deficiency Thymidine Kinase 2 Deficiency (TK2) VLCAD Deficiency Undiagnosed Other Is your diagnosis clinically or genetically confirmed by genetic testing and/or a muscle biopsy? Genetically Confirmed (ie, genetic testing, whole genome sequencing) Muscle Biopsy Clinical Diagnosis Uncertain Is your loved one's diagnosis clinically or genetically confirmed by genetic testing and/or a muscle biopsy? Genetically Confirmed (ie, genetic testing, whole genome sequencing) Muscle Biopsy Clinical Diagnosis Uncertain Is your child's diagnosis clinically or genetically confirmed by genetic testing and/or a muscle biopsy? Genetically Confirmed (ie, genetic testing, whole genome sequencing) Muscle Biopsy Clinical Diagnosis Uncertain Would you like to sign up for our mailing list?\*Mito NewslettersFAOD NewslettersBoth Mito & FAOD Newsletters CAPTCHA Subscribe --- ### [Navigating COVID-19](https://www.mitoaction.org/coronavirus/) **Published:** March 23, 2020 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ### Coronavirus: Recommendations for Patients & Families Last Updated: January 16, 2021 MitoAction is working diligently to keep our community safe and connected with vital updates related to the COVID-19 global outbreak. We will continue to share recommendations from the CDC, NIH and other reputable sources to help you and your family remain safe and protected. #### Mitochondrial Medicine Society Response to COVID-19 Vaccine Patients with mitochondrial disease and families have many questions about the new COVID-19 vaccine(s), including whether to take it? Whether they should be prioritized? And its potential risks and benefits. Click [here](https://www.mitoaction.org/wp-content/uploads/2021/01/InternationalCOVID-19vaccinerecommendationsforMitochondrialDisease.pdf) to read the full statement! #### Summary of Recent Changes Revisions were made on October 6, 2020 to reflect recent data supporting increased risk of severe illness from the virus that causes COVID-19 among adults with COVID-19 who have obesity, who have overweight, or who smoke or have a history of smoking. These revisions also make the document more explicit about data and implications for adults and for children. The listed underlying medical conditions in children were also revised to indicate that these conditions **might** increase risk to better reflect the quality of available data currently. This reflects the fact that there are less data available for children and does not imply that children are not at risk. We are learning more about COVID-19 each day and will continue to provide updates on our website as new information relating to the safety of our community becomes available. The most **IMPORTANT** thing we all can do is to abide by **community-wide social distancing.** This seems to be the most effective at reducing the spread of the virus that causes COVID-19. #### Here are a number of vetted websites that have accurate and current information: - [National Institutes of Health (NIH)](https://www.nih.gov/health-information/coronavirus) - [Centers for Disease Control (CDC)](https://www.cdc.gov/coronavirus/2019-ncov/vaccines/stay-up-to-date.html?s_cid=11747:cdc%20guidance%20fully%20vaccinated:sem.ga:p:RG:GM:gen:PTN:FY22) - [CDC – Are You at Higher Risk for Severe Illness?](https://www.cdc.gov/coronavirus/2019-ncov/specific-groups/high-risk-complications.html) - [COVID-19 and the Rare Disease Community](https://www.rareiscommunity.com/2020/03/20/helpful-resources-for-the-rare-disease-community-around-covid-19/) - [Facebook Coronavirus Information Center](https://about.meta.com/covid-19-information-center?fbclid=IwAR2cFPgZ6AsLQDzHxwZnaSOucfj1p3UH5C4fOFBmpc23IUeuPxmhQxHIxGw) We at MitoAction are getting many questions about ongoing care and how to maintain some sense of normalcy. As we are not giving medical advice, if you are experiencing any symptoms or have medical concerns, please **CALL YOUR PRIMARY DOCTOR FIRST, BEFORE GOING TO THE OFFICE**. People with COVID-19 have had a wide range of symptoms reported – ranging from mild symptoms to severe illness. These symptoms may appear **2-14 days after exposure to the virus**: fever, cough, shortness of breath or difficulty breathing, chills, repeated shaking with chills, muscle pain, headache, sore throat, new loss of taste or smell. Be prepared to have telemedicine appointments and flexibility in your schedule. #### Recommended Ways to Keep You and Your Family Safe: - If you **MUST** leave your home, please remember not to touch your face and to wash your hands when returning home and before any physical contact with any person or surface. If you live in a colder climate, please leave your OUTER CLOTHING at the door, and remove your shoes. Using soap and hot water for 20 seconds is the most effective way to clean your hands and surfaces. Utilize hand sanitizer when soap washing is not an option. - If you do go out, maintain a safe distance from others (6ft) and wear your mask! Avoid handshakes (use fist bumps, elbow bumps, etc.). Open doors with a closed fist or your hip – do not grasp the handle with your hand, unless there is no other way to open the door. Especially important on public restroom and other public doors. - Contact your physician to see if you can transition any upcoming appointments to a virtual appointment. Some appointments will be medically necessary in person, but where possible, a telehealth appointment will help limit your exposure to others. - For Mito patients it is critical at all times to stay well hydrated. While you are staying home, maintain your fluid intake. Staying in your routine is the best way to keep your body and mind in shape. - Nutrition is also key for our community! Eat healthy. We all have our quarantine snacks, but try to resist the temptation to indulge before a healthy choice. - Try to fill your prescriptions for 3 months or more so that you have enough medications to last you for a while. - Again, stay in your routine: Wake up at the usual time, and go to bed at your usual time. If you are anxious or bored, try doing a new activity like coloring, playing physical board games, reading, teaching your pet a trick, cleaning. If you need ideas, hop over to the [MitoAction Facebook Page](https://www.facebook.com/mitoaction/). We have people posting daily what they are doing to stay healthy and keep their families entertained. - Stay connected. Being self quarantined or practicing social distancing for extended periods of time can create feelings of loneliness and anxiety. Reach out to family members and friends via phone, FaceTime or video chat so you don’t feel disconnected from others. As always, these are *recommendations* only. Please connect with your medical team if you have vital concerns about your health or you are experiencing unusual symptoms. Joining us on our weekly support calls is a phenomenal way to connect with others and be reassured you aren’t alone during this. We know that being indoors for extended periods of time can be isolating and lonely, and we want to ensure that MitoAction continues to provide ways to keep our community connected and engaged with one another. For more details about our [weekly support calls](https://www.mitoaction.org/programs-support/weekly-support-calls/weekly-support-calls/) or call our Mito411 Support Line at 888-MITO-411. --- ### [Ways to Cope with the Emotional Impact of COVID-19](https://www.mitoaction.org/coronavirus/emotionalimpact/) **Published:** March 23, 2020 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The outbreak of coronavirus disease 2019 (COVID-19) has caused many different emotions for people. Fear, anxiety and the unknown about a disease can be overwhelming and cause strong emotions in adults and children. Coping with the emotional impact will make you, the people you care about, and your community stronger. - [Home Quarantine and Home Isolation – What You Need to Know and Do](https://www.seattlechildrens.org/globalassets/documents/for-patients-and-families/covid-19-home-quarantine-and-home-isolation-family-handout.pdf) - [Helping Children and Teens Cope with Anxiety About COVID-19](https://pulse.seattlechildrens.org/helping-children-and-teens-cope-with-anxiety-covid-19/) - [Learn More About Social-Distancing](https://hub.jhu.edu/2020/03/13/what-is-social-distancing/) - [Managing Stress During the COVID-19](https://www.uth.edu/news/story.htm?id=bea7c39a-801d-4619-8017-bf267d7142ee) - [Five Things About Staying Mentally Healthy During the COVID-19 Outbreak](https://youtu.be/60kGONUJSRY) - [Tips on Looking After Your Mental Health Under Coronavirus Quarantine](https://www.foxnews.com/media/dr-joshua-gordon-mental-health-coronavirus-quarantine) --- ### [Resources to Keep You Occupied During the COVID-19 Quarantine](https://www.mitoaction.org/coronavirus/resources/) **Published:** March 23, 2020 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") As we are all navigating this temporary quarantine, you might be looking for some fun things to pass the time! We have put compiled these virtual resources that might help! Keep checking back as we will continue to add to this page. #### Virtually Visit a Museum, National Park, Zoo and more! - [Kenai Fjords Glacier Tour, Alaska](https://artsandculture.withgoogle.com/en-us/national-parks-service/kenai-fjords/exit-glacier-tour) - [Hawaii Volcanoes](http://artsandculture.withgoogle.com/en-us/national-parks-service/hawaii-volcanoes/nahuku-lava-tube-tour) - [Carlsbad Caverns, New Mexico](https://artsandculture.withgoogle.com/en-us/national-parks-service/carlsbad-caverns/natural-entrance-tour) - [Kennedy Space Center](https://www.facebook.com/pg/KennedySpaceCenterVisitorComplex/videos/?ref=page_internal) - [The Children’s Museum of Indianapolis](https://www.facebook.com/pg/childrensmuseum/videos/?ref=page_internal) - [Zoo School: Elmwood Park Zoo](https://www.facebook.com/events/2587223751558158/) - [Meigs Point Nature Center – Woods Roam](https://www.facebook.com/pg/MeigsPointNatureCenter/videos/?ref=page_internal) #### Science, Math, Art, Music, and Exercise! - [Sign Language Story Time for Kids](https://www.facebook.com/pg/Sign2MeDaycare/videos/?ref=page_internal) - [Artist at Heart Paint Party](https://www.facebook.com/pg/ArtistAtHeartPaintParty/videos/?ref=page_internal) - [Science Mom & Math Dad](https://www.youtube.com/channel/UC-QcZISbFb9EiIEQ41cVhxw) --- ### [Understanding COVID-19](https://www.mitoaction.org/coronavirus/understanding-covid-19/) **Published:** March 23, 2020 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") We’re learning more every day about the coronavirus (COVID-19). While information and updates can make it hard to keep up, these articles provide the basics on this illness. - [What To Do If You Were Potentially Exposed To Someone With Confirmed Coronavirus Disease (COVID-19)](https://www.doh.wa.gov/Portals/1/Documents/1600/coronavirus/COVIDexposed.pdf) - [How Long Can the Virus that Causes COVID-19 Live on Surfaces?](https://hub.jhu.edu/2020/03/20/sars-cov-2-survive-on-surfaces/) - [Massachusetts General Hospital: Q & A](https://www.massgeneral.org/news/coronavirus/video-questions-about-covid-19) - [CHOP – Frequently Asked Questions About COVID-19](https://www.chop.edu/coronavirus-updates) - [Preparing for Hospitalization of a Child Who is Medically Complex during the COVID-19 Pandemic](https://complexchild.org/articles/covid/preparing-hospitalization/?fbclid=IwAR0j15cBLihn_CG_sV7kEnLX0XEb7_G44bnIefsJkP-gJM0Y_qBmdBYZ7io) - [NORD’s Financial Assistance Program for Rare Disease Community Members Impacted by COVID-19](https://rarediseases.org/nord-launches-financial-assistance-program-for-rare-disease-community-members-impacted-by-covid-19/) - [Back to School Planning: Checklists to Guide Parents, Guardians, and Caregivers](https://www.cdc.gov/coronavirus/2019-ncov/community/schools-childcare/parent-checklist.html) - [MMS Response to COVID-19 Vaccine](https://www.mitoaction.org/wp-content/uploads/2021/01/InternationalCOVID-19vaccinerecommendationsforMitochondrialDisease.pdf) --- ### [Terms of Use](https://www.mitoaction.org/terms-of-use/) **Published:** September 26, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **MitoAction.org Terms of Use** **Description of Services:** MitoAction Inc. (“MitoAction”) currently provides users access to an extensive amount of resources through its website, MitoAction.org, over the telephone, and through its other programs, including, but not limited to, health, medical and legal content, social media groups, online forums, help-lines, support groups, online tools, merchandise offerings, and various communication tools (the “Services”). **MITOACTION DOES NOT PROVIDE MEDICAL ADVICE, DIAGNOSIS, TREATMENT OR LEGAL ADVICE:**The contents of MitoAction.org and the Services provided by MitoAction, including, but not limited to, text, graphics, photographs, software and other material (the “Content”), is presented for informational purposes only. MitoAction will use reasonable efforts to include up-to-date and accurate information in MitoAction.org and the Services, but makes no representations, warranties, or assurances as to the accuracy, currency or completeness of the Content provided, including third-party information, such as, but not limited to, press releases, articles, or information from third-party web sites linked to or from MitoAction.org. MitoAction and its officers, directors, employees, affiliates, agents, volunteers, and sponsors disclaim any responsibility and liability of any kind in connection with the use of the information contained herein or pursuant to the Services. You understand that by using the Services, you may be exposed to content that may include technical, typographical, scientific or photographic errors or that may be offensive, indecent or objectionable. You acknowledge if you find any inaccurate, out-of-date or incomplete information or content on this website, or if you suspect that any content posted on this site is an infringement of another’s intellectual property rights or is otherwise unlawful, please let us know immediately by contacting info@mitoaction.org. We will take reasonable measures to review and investigate all inquiries, and we reserve the right to take any action (or refrain from action) as we deem appropriate under the circumstances. The materials on MitoAction.org and in the Services and the suggestions contained therein in no way should be construed or substituted for professional medical or legal advice. MitoAction is by no means responsible for any accusations, legal actions, damages or adverse judgments due to use of or reliance upon these materials. In its sole discretion, MitoAction may unilaterally amend or modify these Terms of Use or any other documents referenced herein at any time by posting on the Site. Any amended or modified terms will be effective upon posting. Continued use of MitoAction.org or the Services constitutes acceptance of any modified terms and conditions. **For individuals using MitoAction.org or the Services for their own purposes:** The information on MitoAction.org and from the Services, including but not limited to any Content, is for informational and educational purposes only, and is not intended as a substitute for medical professional help, advice, diagnosis or treatment, or professional legal advice. This information is not intended as medical advice and should not be used for, nor is it intended to constitute, a medical diagnosis or treatment. Information on MitoAction.org and from the Services is not provided in the course of a professional relationship between a healthcare provider and a patient and is not intended to create any physician-patient relationship, nor should it be considered a replacement for consultation with a healthcare professional. MitoAction does not recommend or endorse any specific tests, physicians, products, procedures, opinions, or other information that may be mentioned on MitoAction.org or through the Services. Mitochondrial disorders are different from one individual to the next; treatment and symptoms may vary widely. You should not use MitoAction.org or any of the Services to make decisions about your personal health. This information is not intended to replace the advice of a doctor or other qualified health provider. You always should seek the advice of your physician or another competent medical professional to address any questions or concerns you may have regarding your medical care. If you think you may have a medical emergency, please call or see your doctor, or call 911, immediately and without delay. YOU SHOULD NEVER DISREGARD MEDICAL ADVICE, AVOID OR DELAY SEEKING MEDICAL ADVICE OR DEVIATE FROM ANY TREATMENT PROGRAM PRESCRIBED OR OTHERWISE RECOMMENDED TO YOU BY YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH PROVIDER BECAUSE OF SOMETHING YOU HAVE READ ON MITOACTION.ORG OR RECEIVED FROM A SERVICE. You should read carefully all product packaging. Reliance on any information provided on MitoAction.org or through the Services is solely at your own risk. This information also is not intended as legal advice and should not be used to inform any legal opinion, potential claim, pending case or settlement. Information on MitoAction.org and from the Services does not create an attorney-client relationship or privilege between any individuals, nor should it be considered a replacement for consultation with an attorney. MitoAction does not recommend or endorse any particular attorneys. This information is not intended to replace the advice of an attorney licensed in your particular jurisdiction; you always should seek the advice of a legal professional with questions about your rights, potential claims, pending cases or possible settlements. **For medical or legal professionals using the MitoAction.org or the Services:** The information on MitoAction.org and in the Services, including but not limited to any Content, is for informational and educational purposes only. Although MitoAction uses reasonable efforts to ensure that the information provided is current, complete and, where appropriate, based on scientific evidence, MitoAction makes no assurances as to whether the information provided will at all times be current and does not intend to provide medical or legal advice or reflect the best medical practice for any specific circumstance. You therefore should not substitute information contained on MitoAction.org or in the Services for your own professional judgment, nor should you rely on information provided on MitoAction.org or in the Services in rendering a diagnosis, choosing a course of treatment, or providing specifically-tailored legal advice for a particular individual. **Privacy policy:** MitoAction is committed to respecting your personal privacy while using the Site. See [Privacy Policy](https://www.mitoaction.org/privacy-policy/). **Links to third-party websites:** As a resource to our visitors, MitoAction.org and the Services may refer or provide links to third-party websites. MitoAction does not endorse or make any representations about any third-party websites or any information or other products or materials found on these sites, or any results that may be obtained from using these sites. MitoAction has not reviewed all of these other sites, is not responsible for the content on any third-party websites, and does not make any representations regarding their accuracy. MitoAction and its officers, directors, employees, affiliates, agents, volunteers, and sponsors shall not be liable for any damages or injury arising from the content of these other sites. Your use of third-party websites is at your own risk and subject to the privacy policies and terms of use of such sites. MitoAction suggests you check the privacy policies and terms of such sites directly. **Use of Content:** You may print and download portions of material from the different areas of MitoAction.org and the Services solely for your own non-commercial use if you include the following copyright notice: “Copyright ©2017, MitoAction Inc., All rights reserved” and other copyright and proprietary rights notices that are contained in such material. No portion of the material on MitoAction.org and in the Services may be reprinted, republished, modified, or distributed in any form without the express written permission of MitoAction. Certain content on MitoAction.org and in the Services may be licensed from third parties and all such third-party content and all intellectual property rights related to the material belong to such third parties. You may not remove any copyright, trademark or other intellectual property or proprietary notice or legend contained on MitoAction.org or in the Services. Any rights not expressly granted in the Terms of Use are reserved by MitoAction. If you violate any of these Terms of Use, your permission to use the material on MitoAction.org and in the Services automatically terminates and you must immediately destroy any copies you have made of any portion of such material. MitoAction assumes no responsibility or liability for the timeliness, deletion, mis-delivery or failure to store any user communications or personal data or settings. All such risks shall be borne by you. You also understand that MitoAction cannot and does not guarantee or warrant that files available for downloading from MitoAction.org or any of the Services will be free of infection or viruses, worms, Trojan horses, time bombs, cancelbots or other computer programming routines that are intended to damage, detrimentally interfere with, surreptitiously intercept or expropriate any system, data or personal information (collectively, “Hazards”). You are responsible for implementing sufficient procedures and checkpoints to satisfy your particular requirements for accuracy of data input and output, and for maintaining a means external to MitoAction.org and the Services for the reconstruction of any lost data. **Proper Use of Social Media Groups**: Information shared within any MitoAction-moderated social media or other groups, social media area of MitoAction.org, or the Services (collectively, the “Social Media Groups”), is not reviewed or monitored by MitoAction. The Social Media Groups are provided for you to share personal experiences, connect with other visitors, and discuss anything relevant to the management and treatment of mitochondrial diseases. When using the Social Media Groups, you agree not to: - Participate if you are under the age of 13; - Post any profanity or obscenity, even if disguised with asterisks or other typography; - Post or distribute, whether directly or through a link to another website, any vulgar, obscene, discourteous, unlawful, defamatory, unwelcome, threatening, harassing, abusive, slanderous, hateful, violent, lewd, pornographic, or indecent material, as determined by MitoAction in its sole discretion; - Make any personal attack on any person, firm, or company; - “Stalk” or otherwise harass another person; - Use the Social Media Groups for or to discuss any purpose in violation of local, state, national, or international laws; - Post, or create any link to, any material that is a breach of any data protection principle or legislation, a malicious falsehood or seditious libel, a contempt of court, or that is likely to incite or is capable of inciting violence, racial hatred, or cruelty or that encourages any unlawful or illegal act or omission; - Use the Social Media Groups for commercial purposes of any kind, even if you disclose yourself as a representative of such commercial entity; - Post or distribute any material that infringes on the right of a third party, including without limitation the intellectual property rights of others or the privacy and publicity rights of others; - Post any communications containing Personally Identifiable Information (such as name, phone number, email address or website URL) of any person without their consent; - Post “chain letters,” “junk mail,” “pyramid schemes,” any form of spam, multiple submissions to forums or comments which are identical or other forms of promotion for other sites; - Upload media, like images or video, of other people without their permission; - Harvest or otherwise collect information about others, including e-mail addresses, without their consent; - Post or distribute any software or other materials that contain a Hazard, virus or other harmful component; - Impersonate another person, whether a public figure, a member of our staff, a forum moderator, administrator or host, or other visitor to the Social Media Groups, or allow any other person or entity to use your identification; - State or represent falsely that you are connected to, or affiliated with, any individual or entity, including MitoAction; - Create any liability for MitoAction or cause MitoAction to lose (in whole or in part) the services of its internet service provider(s) or other suppliers; - Try to circumvent the security features of the Social Media Groups, or tamper with, hack into, or in any other way disrupt or disable any computer system, server, website, router or other device used to host this website and make it available; - Use any device, software or routine to interfere with the proper working of any Service. You may not take any action that imposes an unreasonable burden upon the infrastructure used to support the efficient operation of MitoAction.org and the Services; or - Use MitoAction.org or the Services in a manner that we determine, at our sole discretion, restricts or inhibits any other user from using or enjoying them. MitoAction reserves the right to: - Investigate an allegation that a communication does not conform to the Terms of Use; - Edit, modify, or delete any communication posted on MitoAction.org or made in any of the Services for any reason in its sole discretion; or - Terminate a user’s access to any or all Social Media Groups upon any breach of the Terms of Use. MitoAction reserves the right to take any action it deems necessary to protect the personal safety of our guests or the public. However, MitoAction and its officers, directors, employees, affiliates, agents, volunteers, and sponsors assume no liability or responsibility to users of MitoAction.org or the Services or any other person or entity for performance or nonperformance of the aforementioned activities. When participating in a Social Media Group, never assume that people are who they say they are, know what they say they know, or are affiliated with whom they say they are affiliated. Information contained in any Social Media Group may not be reliable and you should not make any decisions based on this information. MitoAction and its officers, directors, employees, affiliates, agents, volunteers, and sponsors are not responsible for the content or accuracy of any information contained in any Social Media Group. Users shall comply with all applicable laws, statutes, ordinances and regulations regarding use of MitoAction.org and the Services. If you feel threatened or believe someone else is in danger, contact your local law enforcement agency immediately. If you think you may have a medical emergency, call your doctor or 911 immediately. **Privacy of Children:** MitoAction is committed to protecting the privacy of children. You should be aware that MitoAction.org and the Services are not intended or designed to attract children under the age of 13. We do not collect personally identifiable information from any person we actually know is a child under the age of 13. **Indemnity:** You agree to defend, indemnify, and hold MitoAction and its officers, directors, employees, affiliates, agents, volunteers, and sponsors harmless from and against any claims, actions or demands, liabilities and settlements including without limitation, reasonable legal and accounting fees, resulting from, or alleged to result from (i) your use or misuse of MitoAction.org and the Services, or (ii) your violation of the Terms of Use. **Disclaimer of Warranties and Limitation of Liabilities:** MITOACTION DOES NOT MAKE ANY EXPRESS OR IMPLIED WARRANTIES, REPRESENTATIONS OR ENDORSEMENTS WHATSOEVER (INCLUDING, BUT NOT LIMITED TO, WARRANTIES OF TITLE OR NON-INFRINGEMENT, OR THE IMPLIED WARRANTIES OF MERCHANTABILITY OR FITNESS FOR A PARTICULAR PURPOSE) WITH REGARD TO MITOACTION.ORG, ITS CONTENT, ALL SERVICES, ANY MERCHANDISE PROVIDED THROUGH MITOACTION.ORG OR THE SERVICES OR ON THE INTERNET GENERALLY. MITOACTION AND ITS OFFICERS, DIRECTORS, EMPLOYEES, AFFILIATES, AGENTS, VOLUNTEERS, AND SPONSORS SHALL NOT BE LIABLE FOR ANY COST OR DAMAGE ARISING EITHER DIRECTLY OR INDIRECTLY FROM ANY SUCH TRANSACTION. IT IS SOLELY YOUR RESPONSIBILITY TO EVALUATE THE RELIABILITY, ACCURACY, TIMELINESS, COMPLETENESS OR USEFULNESS OF ALL SERVICES AND CONTENT PROVIDED THROUGH MITOACTION.ORG, ALL SERVICES OR ON THE INTERNET GENERALLY. MITOACTION DOES NOT WARRANT THAT MITOACTION.ORG OR THE SERVICES WILL BE UNINTERRUPTED OR ERROR-FREE OR THAT DEFECTS IN MITOACTION.ORG OR THE SERVICES WILL BE CORRECTED. MITOACTION.ORG, THE SERVICES AND THE CONTENT MADE AVAILABLE ON THEM ARE PROVIDED ON AN “AS IS” AND “AS AVAILABLE” BASIS. **Notice and Take Down Procedures:** If you believe any materials accessible on or from MitoAction.org or any of the Services infringe your copyright, you may request removal of those materials (or access thereto) from MitoAction.org or the Services by contacting MitoAction’s copyright agent (identified below) and providing the following information: 1. Identification of the copyrighted work that you believe to be infringed. Please describe the work, and where possible include a copy or the location (e.g., URL) of an authorized version of the work. 2. Identification of the material that you believe to be infringing and its location. Please describe the material, and provide us with its URL or any other pertinent information that will allow us to locate the material. 3. Your name, address, telephone number and (if available) e-mail address. 4. A statement that you have a good faith belief that the complained of use of the materials is not authorized by the copyright owner, its agent, or the law. 5. A statement that the information that you have supplied is accurate, and indicating that “under penalty of perjury,” you are the copyright owner or are authorized to act on the copyright owner’s behalf. 6. A signature or the electronic equivalent from the copyright holder or authorized representative. MitoAction’s agent for copyright issues relating to this Site is as follows: MitoAction P.O. Box 310 Novi, MI 48376 **Governing Law and Choice of Forum:** These Terms of Use shall be governed by and construed in accordance with the laws of the State of Delaware, exclusive of its choice of law rules and matters affecting copyrights, trademarks and patents under United States federal law. You hereby irrevocably and unconditionally consent to submit to the exclusive jurisdiction of the courts of the State of Massachusetts and of the United States of America located in the State of Massachusetts for any litigation or disputes arising out of or relating to use of MitoAction.org and the Services and not to commence any litigation relating thereto except in such courts. You hereby irrevocably and unconditionally waive any objection to the establishment of venue of any such litigation in the Massachusetts Courts and agree not to plead or claim in any Massachusetts Court that such litigation brought therein has been brought in an inconvenient forum. **International Users:** MitoAction makes no claims that MitoAction.org, the Services or the Content is appropriate or may be accessed outside of the United States. Access to MitoAction.org, the Services or the Content may not be legal in certain countries or for certain persons. If you access MitoAction.org, the Services or the Content from outside of the United States, you do so at your own risk and are responsible for compliance with the laws of your jurisdiction. **Severability:** In the event that one or more portions of these Terms of Use shall, for any reason, be held to be invalid, illegal or unenforceable in any respect, such validity, illegality or unenforceability shall not affect any other provision contained in these Terms of Use. **Headings:** The headings used throughout these Terms of Use are solely for the convenience of reference and are not to be used as an aid in the interpretation of these Terms of Use. **No Waiver:** Any delay or failure by you or MitoAction, at any time or times, to require performance of any provision hereof shall in no manner affect your or MitoAction’s right at a later time to enforce such provision. No delay or failure of you or MitoAction in exercising any right hereunder shall constitute a waiver of such right or any other rights hereunder. **Entire Agreement, Updates and Modifications:** These Terms of Use and any documents expressly incorporated by reference constitute the entire agreement between MitoAction and you pertaining to the subject matter hereof. In its sole discretion, MitoAction may unilaterally amend or modify these Terms of Use or any other documents referenced herein at any time by posting on the Site. Any amended or modified terms will be effective upon posting. Continued use of MitoAction.org or the Services constitutes acceptance of any modified terms and conditions. If you have any questions about these Terms of Use, contact MitoAction at [info@mitoaction.org](mailto:info@cff.org). --- ### [Search](https://www.mitoaction.org/search/) **Published:** April 18, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Use the search field below to find content, resources, events and more by keyword(s). Search --- ### [Financial Assistance for the Mito Cocktail](https://www.mitoaction.org/mitochondrial-disease/treatment/mito-cocktail/financial-assistance-for-the-mito-cocktail/) **Published:** October 17, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Diagnosis & Care](https://www.mitoaction.org/planning-and-preparation/ "Back to Section") # Financial Assistance for the Mito Cocktail The monthly out-of-pocket costs of the “mito cocktail” can be staggering. Our guide can help you get it covered by your insurance program. ![](https://www.mitoaction.org/wp-content/uploads/2024/07/Woman-meeting-with-an-attorney-to-create-an-Estate-Plan-1024x683.webp) By Heidi Martin-Coleman, *RN* *“Cut the Red Tape” Advocate* Many physicians suggest dietary supplements, vitamins, minerals, and other medications for individuals with Mito. Frequently, a number of supplements are administered simultaneously, hence the nickname “Mito Cocktail.” The specific combination and doses of supplements and medication included in a patient’s Mito Cocktail are highly individualized in order to meet the needs of that specific person’s cellular function. Many individuals with Mito find that dietary supplements and medical food help to relieve symptoms and improve quality of life. However, the monthly out-of-pocket costs of medically necessary supplements can be staggering. Information regarding financial assistance for the Mito Cocktail and other medical food is one of MitoAction’s most frequent requests. Since financial assistance programs vary from state to state as well as country to country, keeping up with current funding sources is a daunting task. This guide is designed to provide a starting point for patients and their families to identify potential sources of financial assistance for the Mito Cocktail. As you explore some of the resources offered in this guide, please keep in mind that financial solutions are just as varied as the supplements in the cocktails themselves. You may need to investigate two or three potential sources of assistance before finding one that meets your needs. Several options require lots of phone calls, internet searches, and letter writing. Some suggestions, such as appealing coverage decisions by private insurance or Medicare, can be quite time-consuming. No matter which action you decide to take, **Don’t give up!** The fight for insurance coverage for vitamin and mineral supplements, electrolyte replacement solutions, amino acid and lipid replacements or supplements, and medical food is tedious and on-going. It is critically important for people with mitochondrial disease and the people who care for them. We are trail blazers, and our efforts to spread the word regarding the benefits of the prescription-strength Mito Cocktail components and the medical necessity of these medications will eventually make insurance authorization easier for our children, and our children’s children. #### Before you Start The keys to a successful insurance approval or appeal are *education, persistence, and documentation*. Read the explanation of benefits provided by your private health insurance, Medicare supplement, or other program Make copies of your Mito Cocktail prescriptions, letters of medical necessity, any lab results that support the letters of medical necessity, and documentation of your Mito diagnosis. More information regarding documentation of insurance approval or denial is discussed later in this article. How to establish cocktail components as Medically NecessaryMany Mito Cocktail ingredients are prescription medications that are used to treat medical conditions that are confirmed through common diagnostic tests, such as blood or urine analysis. For example, serum levels of many vitamins, minerals, electrolytes, amino acids, and other substances can be measured via blood tests to determine if they are within therapeutic ranges. If the patient is found to have a deficiency in one or more of these substances, prescription supplements can be provided. The National Drug Code, or NDC number, is a ten-digit number that is used to identify a product as a drug intended for commercial distribution for use in humans. The number is broken into three segments, which indicate the manufacturer, the strength/dose of the drug, and the package size and type. The Food and Drug Administration (FDA) provides a searchable NDC code directory for prescription and OTC drugs, which can be accessed [here](http://www.accessdata.fda.gov/scripts/cder/ndc/default.cfm). Here are some of the most common blood chemistry levels that can be monitored and treated with prescription supplements: - **Water-soluble vitamins** cannot be efficiently stored by your body, which means you must take in and absorb an adequate amount every day. Commonly tested vitamins include B vitamins (thiamine, riboflavin, niacin, pantothenic acid, pyridoxine hydrochloride, cyanocobalamin); folic acid; biotin; ascorbic acid. - **Lipid-Soluble vitamins** need fatty acids to be present in order for the vitamins to be absorbed. All four of these vitamins; A, D, E, and K; can be monitored by blood testing. These vitamins can be provided as oral/enteral supplements. The chemical names for these supplements are retinol (Vit. A), ergocalcipherol/cholecalciferol (Vit. D), tocopherol (Vit. E), and phylloquinone, naphthoquinoids, and phytonadione (different forms of Vit. K.) - **Minerals and Trace Elements** are other essential cellular building blocks that can be tested and monitored long term through routine blood draws. Here are some of the most common electrolytes, minerals, and elements that can be supplemented: [Potassium](http://en.wikipedia.org/wiki/Potassium), [Sodium](http://en.wikipedia.org/wiki/Sodium), [Chloride](http://en.wikipedia.org/wiki/Chloride), [Calcium](http://en.wikipedia.org/wiki/Calcium), [Magnesium](http://en.wikipedia.org/wiki/Magnesium), [Phosphorus](http://en.wikipedia.org/wiki/Phosphorus). Other substances are known as trace elements and/or metals; these include (but are not limited to): [Zinc](http://en.wikipedia.org/wiki/Zinc), [Iron](http://en.wikipedia.org/wiki/Iron), [Manganese](http://en.wikipedia.org/wiki/Manganese), [Molybdenum](http://en.wikipedia.org/wiki/Molybdenum), [Nickel](http://en.wikipedia.org/wiki/Nickel), [Copper](http://en.wikipedia.org/wiki/Copper) , [Selenium](http://en.wikipedia.org/wiki/Selenium), [Sulfur](http://en.wikipedia.org/wiki/Sulfur), [Chromium](http://en.wikipedia.org/wiki/Chromium) ,[Cobalt](http://en.wikipedia.org/wiki/Cobalt) (given in conjunction with [Vitamin B-12](http://en.wikipedia.org/wiki/Vitamin_B-12)), and [Iodine](http://en.wikipedia.org/wiki/Iodine). - **Antioxidants** are substances that may protect your cells against the effects of free radicals. Free radicals are molecules produced when your body breaks down food, or by environmental exposures like tobacco smoke and radiation. Free radicals can damage cells, and may play a role in heart disease, cancer and other diseases.(Antioxidants, 2012) - **Carnitine** improves the efficiency of ATP production by helping import certain fuel molecules into mitochondria, and cleaning up some of the toxic byproducts of ATP production. (Facts about Mitochondrial Myopathies, 2009) Serum carnitine levels can be determined via blood tests, which can give some answers regarding an individual’s ability to absorb carnitine from food and then to use it efficiently. By measuring the amount of carnitine in the blood and comparing it to the amount of broken-down “leftovers” waiting to be excreted, medical teams can determine if the problem is primary or secondary to other metabolic illness, drugs that impair carnitine function, G.I. malabsorption, or renal impairment. *NOTE: carnitine is available in two forms, the prescription drug levocarnitine (brand name Carnitor) and the over-the-counter supplement D-carnitine, sometimes referred to as vitamin Bt. D-carnitine and Vitamin Bt are contraindicated for use by individuals with carnitine deficiency, as they can interfere with the body’s ability to utilize dietary carnitine. Always consult your doctor prior to using any over-the-counter vitamins and dietary supplements.* **Carnitor (levocarnitine) can be obtained for free or at a reduced price for individuals with metabolic disorders or serum carnitine deficiency. Refer to the “Special Programs” section for more information.**\[1\] - **Coenzyme Q-10** is a component of the electron transport chain, which uses oxygen to manufacture ATP. (Facts about Mitochondrial Myopathies, 2009) Coenzyme Q-10 has been recognized by the FDA as having Orphan Drug Status. This means that it has earned recognition as treatment for a rare disease and has its own NDC number, which enables the drug to be prescribed and billed to private and public health insurances. For more in-depth information about the FDA Orphan Drug Program, please refer to [this link ](https://www.fda.gov/about-fda/office-special-medical-programs/office-orphan-products-development). - **Alpha Lipoic Acid** Alpha Lipoic Acid is an anti-oxidantthat has been used in Germany to help relieve nerve pain and symptoms of Diabetic Neuropathy. Sometimes, Alpha Lipoic Acid is compounded into high-dose capsules so that patients do not need to take several capsules (and fillers) numerous times a day. - **Amino acids** are the building blocks used to create proteins. Amino acids are divided into two groups: essential and non-essential amino acids. The difference between the two is that the body has access to all the components necessary to self-manufacture some types of amino acids; the amino acids that depend on dietary intake to provide all the necessary building blocks are known as Essential Amino Acids. A list of all essential and non-essential amino acids, along with a general description of the way the body uses each amino acid, can be found [here](http://www.aminoacidsguide.com/). - **Essential Fatty Acids** Some individuals with Mito have a secondary Fatty Acid Oxidation disorder that interferes with their ability to absorb fatty acids necessary to maintain health. - **Creatine Monohydrate**. According to Dr. Fran Kendall during a [teleconference in 2008](https://www.mitoaction.org/resources/meeting-coq10-and-creatine-aug-1-2008/), Creatine is converted in the body to phosphocreatine (an anaerobic pre-cursor to ATP). This naturally occurring substance is thought to help generate extra energy when taken as a supplement in people with mitochondrial disorders. Solace Nutrition offers Creatine Monohydrate in a liquid suspension. The product, Cytotine, is considered a medical food and its NDC# is 57771-0001-91. How do I know that the dietary supplements I am purchasing actually contain the strength, quality, and purity that the bottle claims?[USP Verified dietary supplements](https://www.usp.org/products/dietary-supplements-compendium) have been rigorously tested by the U.S. Pharmacopeia’s rigorous Dietary Supplement Verification Program, which ensures that the supplement contains the ingredients listed on the label and has been manufactured according to current FDA practices, among other guidelines. USP Verified dietary supplements can be purchased from the following [companies](http://www.usp.org/usp-verification-services/usp-verified-dietary-supplements/verified-supplements). *NOTE: This list is provided for consumer convenience, and is not an exhaustive list. In some instances, dietary supplements may also be considered prescription pharmaceuticals, and may not appear on this list of USP verified dietary supplements. Please consult your physician or pharmacist for more information.* How can I confirm that the online pharmacy I am ordering from is trustworthy?Many online pharmacies are unregulated and, in some cases, illegal. Before sending money to an online pharmacy, verify its authenticity through [The Alliance of Safe Online Pharmacies](http://safeonlinerx.com/)**.** For more information, contact the [FDA’s BeSafeRX program](https://www.fda.gov/drugs/quick-tips-buying-medicines-over-internet/besaferx-your-source-online-pharmacy-information). Compounded Medication: What it is, how it can help in obtaining financial coverage, and where you can have it prepared.Compounding pharmacies are able to modify the physical properties of a medication without affecting the chemical properties of the medication itself. For example, an individual who takes meds through a feeding tube may not be able to tolerate the large volume of liquid that results from six or seven separate medications administered at the same time. By eliminating fillers, flavoring agents, and diluents, a compounding pharmacist may be able to combine multiple medications into a compound, with a final volume measured in teaspoons rather than ounces. Other medications can be prepared as transdermal systems (skin patches), rectal suppositories, topical preparations (creams or lotions), lollipops, gummy bears, or concentrated liquids free from potential allergens. Check with your insurance to see if medically necessary compounded medication is covered. Usually, compounded mixtures are covered if the medication is not commercially available in the form that the patient needs (such as liquid preparations for an individual with a feeding tube), or at least one component is available by prescription only (folic acid, Carnitor, vitamin K, fluoride, and MCT oil are common prescription-only components.) This is the link to MitoAction’s Expert Series discussing the role of compounding pharmacies in the creation of the Mito Cocktail: [Q&A with Compounding Pharmacists](https://www.mitoaction.org/resources/questions-and-answers-with-compounding-pharmacists/) Other factors that may influence your private insurance’s decision to approve the compounded medication include: - Do you or your child have allergies or intolerances to other prescription or non-prescription medication, artificial colors or flavors, latex, or food? Most oral liquid or pill-form medication contains fillers, colors, or flavors that may trigger a cross-sensitivity allergic reaction, especially if the individual has a severe allergy to latex, corn, or soy. - Does your child need unusually large or small amounts of a medication? Individuals receiving very large or very small amounts of a medication are at a higher risk for accidental over-and under-dosing than people who receive “average” quantities, such as 1 to 2 teaspoons or 1 to 2 tablets. - Compounding pharmacies can add inert substances to expand the volume of drug that is given in order to make dosing more precise It is much, much easier to measure 1.25ml than it is to measure 0.125ml. - If an individual requires an unusually large dose of a medication, the pharmacist can prepare the medication in a concentrated form. For example, a medication comes in 30mg capsules but the individual must take 300mg, or 10 capsules per dose, the compounding pharmacist can create a 300mg capsule or a liquid preparation with 300mg per teaspoon of medication, depending on the drug - If a medication not available in the US but is available for experimental or “Compassionate Use” under the FDA, a compounding pharmacy may have more experience obtaining these meds than a standard, chain pharmacy may have. You could contact the [Robert Wood Johnson Foundation](https://www.rwjf.org/en/robert-wood-johnson-foundation.html) or the [US Department of Labor](https://www.dol.gov/agencies/ebsa/laws-and-regulations/laws/affordable-care-act/for-employers-and-advisers) for further assistance. If you or your child receives a denial of coverage letter from your health insurance provider, file an appeal immediately. When appealing a decision for compounded medication, it may help to provide the following documentation: - Medical records documenting allergies or intolerances to fillers, artificial colors or flavors, or other substances present in commercially-available supplements - Documentation of GI dysmotility, especially objective testing that demonstrates delayed gastric emptying. Concentrated meds that require a smaller volume to be administered are usually tolerated better than large amounts of fluid, especially if administered via enteral tubes. - Very high potential for error when administering unusually small amounts of medication per physician’s order. (For example, if your child is supposed to receive 0.25ml of a liquid medication and the dropper in the bottle has lines indicating 0.5 and 1.0ml, it is very difficult to ensure that the child’s dose has been measured correctly.) [](http://www.mitoawareness.org/blog/financial-assistance-mito-cocktail#_ftn2)\[2\] Where can I find a compounding pharmacy?The [International Academy of Compounding Pharmacists](https://a4pc.org/find-a-compounder/) (IACP) maintains a referral service on their web site. They can also be reached by telephone at (800) 927-4227. Complementary and Alternative Medicine: What is it and how to pay for it?#### What is CAM? The National Center for Complementary and Alternative Medicine (NCCAM) defines CAM as “a group of diverse medical and health care systems, practices, and products that are not generally considered part of conventional medicine.” “Conventional Medicine” refers to medicine as practiced by holders of M.D. (medical doctor) or D.O. (doctor of osteopathy) degrees and by their allied health professionals such as physical therapists, psychologists, and registered nurses. - “Complementary medicine” refers to use of CAM **in conjunction with** conventional medicine, such as using acupuncture in addition to usual care to help lessen pain. Most use of CAM by Americans is complementary. - “Alternative medicine” refers to use of CAM **in place of** conventional medicine. - “Integrative medicine” (also called integrated medicine) refers to a practice that combines both conventional and CAM treatments for which there is evidence of safety and effectiveness. **How can I pay for Complementary and Alternative Medicine?** There are very few organizations that provide financial assistance for CAM. The National Center for Complementary and Alternative Medicine has compiled the following fact sheet: “[Paying for CAM Treatment](https://www.nccih.nih.gov/health/paying-for-complementary-and-integrative-health-approaches)“. Medical Food? Nutritional Supplement? What’s the Difference?According to the FDA, a Medical Food is: *“a food which is formulated to be consumed or administered enterally under the supervision of a physician and which is intended for the specific dietary management of a disease or condition for which distinctive nutritional requirements, based on recognized scientific principles, are established by medical evaluation.”* A Nutritional Supplement is *“a product that includes one or more dietary ingredients (vitamins, minerals, herbs or botanicals, amino acids, and other substances), is intended to be taken by mouth to supplement the diet, and cannot be labeled as a cure or treatment for any disease or medical condition”.* [](http://www.mitoawareness.org/blog/financial-assistance-mito-cocktail#_ftn3)\[3\] Please note: A vitamin tablet can be considered a nutritional supplement, yet it can also be considered a medically necessary medication. What makes the distinction between the two is the **NDC Code. (Please refer to section 1 for more information.) **Dietary supplements, superfoods, fad diets, and miracle cures are everywhere.** A google search on “Nutritional Supplement” yields nearly three million websites. Many of these websites have been created to sell a product. These sites often provide inaccurate information and unsubstantiated claims in order to persuade you to buy a particular supplement. The supplements offered may contain the product as advertised…or they may not. Sometimes these products contain no active ingredient; others may contain an unlisted ingredient that could be harmful. The addition of dietary supplements and medical food to one’s treatment regimen should take place under close medical supervision. It is the responsibility of the consumer and his/her medical team to research products and ensure that the information given is accurate, safe, and up-to-date. For more information regarding the efficacy and use of nutritional supplements, try the following websites: #### [Office of Dietary Supplements (ODS)](https://ods.od.nih.gov), a department of the National Institutes of Health ODS seeks to strengthen knowledge and understanding of dietary supplements by evaluating scientific information, supporting research, sharing research results, and educating the public. Its resources include publications and the International Bibliographic Information on Dietary Supplements database. #### U.S. Food and Drug Administration (FDA) - [Center for Food Safety and Applied Nutrition ](https://www.fda.gov/about-fda/office-foods-and-veterinary-medicine/center-food-safety-and-applied-nutrition-cfsan) - [Tips for Dietary Supplement Users](https://www.fda.gov/food/dietary-supplements/information-consumers-using-dietary-supplements) - [Dietary Supplements: What You Need to Know](https://www.fda.gov/food/information-consumers-using-dietary-supplements/questions-and-answers-dietary-supplements) - [Health Fraud Scams](http://www.fda.gov/ForConsumers/ProtectYourself/HealthFraud/default.htm) - [Tainted Supplements](http://www.accessdata.fda.gov/scripts/sda/sdNavigation.cfm?filter=&sortColumn=3a&sd=tainted_supplements_cder&displayAll=true) Safety warnings regarding substances marketed as dietary supplements - [Safety Alerts and Advisories](http://www.fda.gov/food/recallsoutbreaksemergencies/safetyalertsadvisories/default.htm) Recalls, market withdrawals, and safety alerts regarding FDA-regulated products, including dietary supplements These resources provide more information about types, uses, and effects of Medical Foods: - [What are Medical foods? ](https://www.fda.gov/food/guidance-documents-regulatory-information-topic-food-and-dietary-supplements/medical-foods-guidance-documents-regulatory-information) - [Medical Food FAQ’s](https://www.fda.gov/food/guidance-documents-regulatory-information-topic-food-and-dietary-supplements/medical-foods-guidance-documents-regulatory-information) - MitoAction’s Webinar “[Medical Foods for Mito](https://www.mitoaction.org/resources/medical-foods-for-mito/)“ Medical Food Reimbursement Legislation for Children: How it May Apply to the Mito CocktailEfforts are underway to create laws that mandate private insurance companies to cover the costs of medically necessary formulas. State statutes and regulations on dietary treatment of disorders identified through newborn screening can be found [here.](https://www.mitoaction.org/wp-content/uploads/2019/10/State-Statues-for-nutrition-and-newborn-screening.pdf) A handbook outlining the different kinds of enteral formulas available and indications for their use can be found [here.](https://publications.nutritioncare.org/) Financial assistance is available for medical food, enteral nutrition and some dietary supplements. Pharmacy Discount CardsSeveral national pharmacy chains and non-profit wellness organizations offer discounts on medication that is sold over-the-counter but has been prescribed by a physician. These cards are generally provided to consumers for free, and are similar to “loyalty” cards that provide discounts to supermarket patrons. On August 20, 2012, [Good Morning America’s ](http://abcnews.go.com/Business/drug-discount-cards-save-money-prescription-meds/story?id=17029498) Consumer Correspondent Elisabeth Leamy presented a story about medication discount cards, a valuable but under-utilized resource that can save individuals large amounts of money while purchasing prescription and non-prescription medication, dietary supplements, and sometimes other health care items. A comparison between the attributes of each card can be found [here,](http://www.consumerworld.org/pubs/prescriptiondrugcardsprs.pdf) in an article written by Edgar Dworsky, Founder and Editor of ConsumerWorld.org. The [NeedyMeds](http://www.needymeds.org/drugcard/index.htm) discount card Compare price of meds in up to five local pharmacies via /. [PS Discount Card](http://www.pscard.com/) The [**WellCard Health** program](https://www.wellcardsavings.com/?wchmember=1/Public/vitamins.aspx) offers discounts on vitamins and nutritional supplements purchased through their mail-in program. The program also offers discounts on many other products and services. Insurance Denied Coverage? How to Write an AppealHere are some general guidelines regarding health insurance appeals and resources that can guide you through the appeals process: - If you receive a letter stating that a medication or treatment coverage or reimbursement request has been denied, respond immediately. The appeals process timeline varies between different private insurance companies, Medicaid, and Medicare. Make copies of all forms and letters you submit to your insurance, being sure to note when it was sent, received, and who you spoke to in order to confirm receipt. - If you haven’t had the opportunity to establish a relationship with a Case Manager through your insurance agency, call your insurance company and request one. This way, you’ll have the name of a person who will eventually recognize your child and family. - The most common reasons for initial denial of medically necessary medication or treatment is clerical errors and often happens due to errors in Prior Authorization letters or Letters of Medical Necessity, especially if the individual is working with two or more insurance companies. It is not uncommon for a person with Mito to have primary coverage through a private insurance company, secondary coverage through a Medicaid Waiver Program, and even tertiary coverage through Medicare part B and/or D. It is very easy for paperwork to be misdirected or billing errors to occur. - Keep a log of phone calls to/from your insurance company and/or case manager. Follow up phone conversations with emails or written confirmation letters via fax or mail to create a “paper trail” documenting your attempts to resolve issues, comply with deadlines, and provide all necessary documentation. - Medicaid generally pays for OTC medications when written as a Doctor’s order, especially if the ordered med has a letter of medical necessity and an NDC#. - Since Medicaid programs are managed by individual states, medication coverage and policies vary. [This chart](http://kff.org/medicaid/state-indicator/prescription-drugs/) gives very basic information regarding pharmacy benefits by state. **These resources offer step-by-step instructions regarding the insurance appeals process:** The Patient Advocate Foundation is a non-profit organization that helps consumers to obtain high-quality medical care. This organization provides a wealth of information via real-time “web chats” with patient referral experts, free advocacy services available at multiple sites across the US, and publications that are available online, or can be mailed to consumers upon request. The list of all available publications can be found [here.](http://www.patientadvocate.org/resources.php?p=749) The following publication may be helpful in your efforts to receive coverage for Mito Cocktail medications: [ “Your Guide To the Appeals Process” ](https://www.patientadvocate.org/wp-content/uploads/Navigating-the-insurance-appeals-guide-pages.pdf) **Your Last Resort:** If you are unable to resolve your conflict regarding insurance coverage of medically necessary supplements at the insurance company level, contact your state’s Insurance Commission and [file a complaint](http://www.naic.org/state_web_map.htm). Potential Sources of Financial Assistance for Adults and Chlildren**Assistance for the uninsured and underinsured:** If you have health insurance but are still struggling to meet your out-of-pocket cost you would be considered underinsured. Visit [this link](http://www.patientadvocate.org/NURD/index2.php?application=underinsured) for further information and assistance. **Assistance for Specific Drugs: Carnitine** If you have a carnitine deficiency diagnosed through blood tests, you may be eligible to receive Carnitor for free. Contact one of the following programs for more information: **NIH** [Carnitor Patient Assistance](http://www.carnitor.com/) Program Customer Service: 1(800)447-0169 1(301)670-2189 (fax) **NORD Patient Assistance Programs** NORD provides Carnitor for people with Primary Carnitine Deficiency as well as secondary deficiencies related to hemodialysis, Chronic FatigueSyndrome, and a wide variety of metabolic disorders, including Mitochondrial Disease. 1(800)-999-6673 extension 336. #### Insurance Copay Relief Programs [C](https://copays.org/)[opays.org](https://copays.org/) The Patient Advocate Foundation’s Copay Relief program provides financial assistance for individuals who have one of several medical conditions that require specific medical treatments. Electrolyte Imbalance frequently occurs as a secondary medical condition related to Mito, specifically if the individual experiences gastrointestinal or renal dysfunction. The PAF Copay Relief program can provide assistance to applicants who meet the following criteria: #### Eligibility Criteria - Patient should be insured and insurance must cover the medication for which patient seeks assistance. - Patient must have a confirmed diagnosis of Electrolyte Imbalance. - Patient must reside and receive treatment in the United States. - Patient’s income must fall below 500% of the [Federal Poverty Guideline](http://www.familiesusa.org/resources/tools-for-advocates/guides/federal-poverty-guidelines.html) (FPG) with consideration of the Cost of Living Index(COLI) and the number in the household. Prescription drug plans offered by national retail chains may cost less out of pocket ($4 for 30 day supply, $9 for three month supply) may cost less than your insurance copays. Here are the lists of generic prescription meds that fall into this category: **Walmart:** **Target:** [https://tgtfiles.target.com/pharmacy/WCMP02-032536\_RxGenericsList\_NM7.pdf](https://tgtfiles.target.com/pharmacy/WCMP02-032536_RxGenericsList_NM7.pdf) **Walgreens:** please note: Walgreens discount drugs are priced via a tier system ($5, $10, or $15 for a 30-day supply.) However, Walgreens includes many vitamins and other nutritional supplements in their discount program. For more information about other stores with prescription drug discounts, please refer to the article prepared by [Consumer Reports](http://www.consumerreports.org/cro/2012/04/discount-drug-programs-can-save-you-money/index.htm). **Tax Deductible Medical and Dental Expenses:** Many out-of-pocket medical expenses are tax deductible. For more information, see [Publication 502](http://www.irs.gov/pub/irs-pdf/p502.pdf). **Buying SAFE drugs online for less**: Private Grant Programs for Children with DisabilitiesThese grant organizations may provide financial assistance for children’s cocktail meds: - [www.uhccf.org](http://www.uhccf.org/) The United Healthcare Children’s Foundation assists children through age 16 with private health insurance coverage; copays, transportation, meds and dietary supplements not covered by insurance plan - [https://www.cernercharitablefoundation.org](https://www.cernercharitablefoundation.org/) Cerner Charitable Foundation (formerly First Hand Foundation) assists families with a variety of disability and illness-related expenses, including medication. \*Note: The First Hand Foundation offers assistance to children in the US, Canada, and other countries as well. - [www.beanangel.org](http://www.beanangel.org/) financial assistance for children with multiple disabilities or who are profoundly deaf. - [http://www.marksmoney.org](http://www.marksmoney.org/) Mark’s Money is a tax-exempt 501 (c)(3) non-profit organization that provides financial assistance to persons with Down syndrome or other developmental disabilities to improve their quality of life by meeting their daily living, employment, medical, residential, or social needs. Awards up to $500 per applicant per year. There is no age limit. However, applicants must have life-long developmental/cognitive disabilities, such as Down Syndrome. - [http://parkerspurpose.net](http://parkerspurpose.net/) Parker’s Purpose is a foundation that provides monetary assistance to the family of any child (18 years or younger) with a life-altering illness or disability that is in immediate financial crisis due to unforeseen medical expenses. Funds are distributed within four weeks of approval and can be used as the recipient family deems fit to help with their situation. Families living in Ohio are first priority for providing assistance, but out-of-state families are invited to apply. ResourcesFor more information regarding substances typically found in the Mito Cocktail, refer to the following resources: The Treatment of Mitochondrial Cytopathies; D. Gold, MD; B.Cohen, MD; 9/2001 Bronheim, B. and Tonniges, T. Strengthening the Community System of Care for Children and Youth with Special Health Care Needs and their Families: Collaboration Between Health Care and Community Service Systems, Georgetown University Center for Child and Human Development, Washington, DC, 2004 (Public Domain) (accessed 12/2/2013) Abadi A, Crane JD, Ogborn D, Hettinga B, Akhtar M, et al. (2013) Supplementation with α-Lipoic Acid, CoQ10, and Vitamin EAugments Running Performance and Mitochondrial Function in Female Mice. PLoS ONE 8(4): e60722. doi:10.1371/journal.pone.0060722 (accessed 1/26/14) Vitamins, Their Chemical Names, And Functions Speer, Oliver. Methylglyoxal, creatine and mitochondrial micro-compartments (2003). Solace Nutrition is a company that manufactures medical food supplements including components of the Mito Cocktail. This website is included in the reference section due to its informative content; The inclusion of and brand name products on the MitoAction website does not imply endorsement of any product. As always, consult your physician before starting or discontinuing and medication, medical food, or supplement. Rodriguez MC, MacDonald JR, Mahoney DJ, et al; Beneficial Efects of Creatine, CoQ-10, and Lipoic Acid in Mitochondrial Disorders; Muscle Nerve; Feb 2007; 35(2):235-42. (Accessed 1/28/2014) *© COPYRIGHT 2014 by Heidi Martin-Coleman and MitoAction.org. This document may be reproduced and offered free of charge with permission from Heidi Martin-Coleman and MitoAction.org, for professional use with individual families.* **MITOACTION.ORG DOES NOT PROVIDE MEDICAL ADVICE, DIAGNOSIS OR TREATMENT.** See [Terms of Use](https://www.mitoaction.org/terms-of-use/ "Terms of Use"). [](http://www.mitoawareness.org/blog/financial-assistance-mito-cocktail#_ftnref1)*\[1\] http://www.webmd.com/drugs/drug-13945-levocarnitine+oral.aspx [](http://www.mitoawareness.org/blog/financial-assistance-mito-cocktail#_ftnref2)\[2\] Sentinel Event Alert: Preventing Pediatric Medication Errors; Issue 39; 11 April 2008; http://www.jointcommission.org/assets/1/18/SEA\_39.PDF (accessed 1/26/14) [](http://www.mitoawareness.org/blog/financial-assistance-mito-cocktail#_ftnref3)\[3\] http://www.fda.gov/Food/ResourcesForYOu/Consumers/ucm109760.htm* --- ### [Advocating For Your Child: Navigating Through Your Health Insurance](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/children-with-mito/disability-insurance-laws/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Planning & Preparation](https://www.mitoaction.org/planning-and-preparation/ "Education") # Advocating For Your Child: Navigating Through Your Health Insurance Insurance companies save money by issuing denials and limiting coverage. Knowing how to properly document your child’s medical issues and expenses can help make sure their medical costs get covered. ![](https://www.mitoaction.org/wp-content/uploads/2024/07/Young-boy-and-his-mother-meeting-with-a-doctor-1024x683.webp) *This content has been provided by Dino Scanio, pediatric orthotist.* The face of healthcare has changed dramatically in the last five years due to legislative influence and a spiraling economy. This has forced health insurance companies to reexamine their policies and how they provide coverage. Under examination, your health insurance company may need to make changes to save money. Their potential savings will come from issuing denials and/or limiting coverage. This is especially true when it involves coverage for children. What do you need to know in an effort to ensure proper coverage for your child? ## Health Insurance Plan Documents Your insurance plan documents are the documents of truth. As a parent of a special needs child, **it is important to read through the insurance plan documents with a fine-tooth comb**. Make sure that a service is a provided one before you seek care. BUT just because it is stated in your policy as a provided service DOES NOT mean it will be approved. The trend with health insurance companies is to deny services and hope that you will not proceed with an appeal. If you give up, it will save the insurance company money. ## Prescriptions It is important that your paperwork is in order prior to obtaining medical services/treatment or DME (Durable Medical Equipment). Make sure the prescriptions are properly filled. This will reduce the “red flags” that health insurances companies rely on as an easy way to issue a denial. The prescriptions MUST have: - Beneficiary’s Name - Physician’s Name - Date of the order and the start date, if the start date is different from the date of order - Detailed description of the item - The prescribing practitioner’s National Provider Identifier (NPI) - The signature of the ordering practitioner - Signature date ## Medical Necessity To support your effort as a parent advocate, it may behoove you to have your child’s physician provide a statement of “medical necessity”. This is a letter that explains the diagnosis/condition, why the prescriptions were written and the expected positive outcomes as well as any negative effects the patient might incur if the prescriptions are not filled. The letter must be signed by the physician and must include their credentials. Medical necessity letters are vitally important when seeking nursing care. The components of a medical necessity letter: - Identifying information: child’s name, date of birth, insured’s name, policy number, group number, Medicaid number, physician name, and date letter was written - A statement of who you are; the child’s primary care physician - The date you last evaluated the patient - The diagnosis of the patient. Think carefully about what diagnosis to include (include as many as possible) as some diagnoses may be an exclusion. One insurance refused to cover PediaSure for a child with a diagnosis of autism because it was an ***uncovered diagnosis***; however, on appeal, they covered the PediaSure for the same child for a diagnosis of chronic constipation, ***a covered diagnosis*** - Pertinent medical history (e.g. for a wheelchair approval, it would be appropriate to state that the child has cerebral palsy with severe motor impairment) - Document pertinent medical, developmental, or evaluative information. For the child with poorly controlled asthma for whom you are requesting a nebulizer, you would summarize what treatments have already been in place and how many ER visits and hospital admissions the child has had in the past year - Document why the requested evaluation/treatment/equipment is **medically necessary.** This is critical to the process, but unfortunately, the definition of the medically necessary varies from insurance to insurance. Medicaid’s definition of being medically necessary is: - Reasonably calculated to prevent, diagnose, or cure conditions in the patient that endanger life, cause suffering or pain, physical deformity or malfunctions, or threatens to cause a handicap; and - There is no equally effective course of treatment available for the recipient which is more conservative or less costly - A summary statement. In this statement, try to emphasize the logical conclusion (e.g., a nebulizer is medically necessary for this child with a diagnosis of asthma. Since this insurance covers the diagnosis of asthma and durable medical equipment is a covered benefit, it would be appropriate to approve funding for this child’s nebulizer) - Signature, professional qualifications, and contact information in case the reviewer has questions ## Digital Photographs and/or Video Pictures and video speak louder than words so it may be advantageous to take a few digital photographs/videos of your child. For example: if your child is unable to walk appropriately without leg braces then make a video of your child attempting to walk without braces and make sure you include the process of putting on the braces and how they improve your child’s gait. Another example is the need for nursing care to manage a wound. Make sure to take digital pictures of the wound site. #### Preauthorization/Determination of Coverage When coverage is questionable, you should be able to ask for a ***PREAUTHORIATION*** for the requested services/prescriptions. Some insurance companies will say this is not necessary but it is in your best interest to request one. This will be your ammunition for the appeals process if services are denied. All preauthorization statements will include a disclaimer to the effect of “this is not a guarantee of payment/coverage” because insurance companies are looking to save money, NOT SPEND it. Now you have been given the information to make you a better advocate for your child and some insight on navigating through murky waters of insurance trends. So what do you do if services are denied? Consult your insurance provider and request their guidelines for the appeals process. Insurance companies hope that the policy holder will not appeal or give up during the process because it is such a mundane task. GIVING UP WILL SAVE THEM MONEY at the expense of your child’s health! If your appeal is denied, you may have the option to request a doctor to doctor appeal, an external review or mediation. This information will be outlined in your plan documents but if further assistance is needed, you can request help from the State or Federal Insurance Commissioner. You can also file a complaint with the Commissioner which will require them to assign an investigator to your case. We as policy holders cannot and should not allow insurance companies to dictate care. It is humanly wrong for them to say when, how and why or why not health services are provided. Doctors are experts that have the right to make decisions based on the interests of their patient. They are held to a high standard by a medical code of ethics. In my opinion, if a doctor orders it, then it should be covered by the insurance company. Be your child’s advocate and fight against the tyranny of the health insurance companies. > “It is important to remember that you do have rights which are described in your insurance policy handbook. A health insurance policy is a contract between you, the policy holder, and the insurance company. A denial is a “contract dispute,” and your appeal must be based both on the reason for the denial and provisions in your insurance policy, contract or Summary Plan Description.” > > — Patient Advocate Foundation > ### About Dino Scanio **Dino Scanio** is a pediatric orthotist in Tampa, Florida and the clinic director and founder of the FOOT Foundation. He is also the father of a son with mitochondrial disease. The article shared above was written before his son’s official diagnosis of mitochondrial disease and has been published previously in Florida Crossroads Magazine and in the UMDF newsletter. For more information on the FOOT Foundation, please visit [www.footfoundation.org](http://www.footfoundation.org/). --- ### [Disability Benefits](https://www.mitoaction.org/planning-and-preparation/disability-insurance/) **Published:** September 30, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Planning & Preparation](https://www.mitoaction.org/planning-and-preparation/ "Planning & Preparation") # Disability Benefits State, Federal and private programs are available to help cover the costs of education, equipment and healthcare. ![](https://www.mitoaction.org/wp-content/uploads/2024/07/Man-with-mitochondrial-disease-using-mobility-devices-1024x683.webp) *This content has been provided by Valerie A. Powers Smith, Partner at Slovak Baron Empey Murphy & Pinkney LLP*. ## Legal Issues for Mitochondrial Families Across the Lifespan ### Early Intervention (ages 0-3) Under Part C of the IDEA, all states must implement a statewide system of services for infants and toddlers, birth to age three, with developmental delays or disabilities, and their families. *See generally* 20 U.S.C. §1431 etseq*.* To determine if such services are necessary, there must be a timely evaluation of the functioning of each infant or toddler with a disability. 20 U.S.C. § 1435(a)(3). Following the evaluation, the state must develop an individualized family service plan, commonly referred to as an Individualized Family Service Plan (IFSP), to describe the services that are needed by the child and family and how they will be implemented. 20 U.S.C. § 1435(a)(4). Early intervention services are funded, in part, with state and federal funds. As an example, in New Jersey, a child is considered eligible for early intervention services if he or she is under the age of three and has at least a 33% delay in one or a 25% delay in two or more of the developmental areas: - Physical, including gross motor, fine motor, and sensory (vision and hearing) - Cognitive - Communication - Social or emotional - Adaptive Services include but are not limited to: Assistive Technology, Audiology Services; Health Services (clean intermittent catheterization, tracheotomy care, tube feeding, the changing of dressings or colostomy collection bags, and consultation with service providers concerning special health care needs); Medical Services (diagnostic or evaluation services by a licensed physician to determine a child’s developmental status and the need for early intervention services); Nursing Services and Nutrition. Other services may include: occupational therapy, physical therapy, speech/language pathology; vision services (evaluation and assessment of vision, referral for medical or other professional services necessary for the habilitation or rehabilitation of visual functions); psychological services; and social work services. ### Educational Entitlements (ages 3-21) Children between the ages of 3 and 21 with disabilities severe enough to negatively affect learning are entitled to special education services at no cost to parents. These services are federally mandated in all states. In most States, it is the responsibility of local school districts, with oversight provided by the State’s Department of Education or its equivalent governmental office. School districts are responsible for identifying, evaluating, and then classifying children with disabilities as eligible for special education and related services. State regulations set out time lines and the methods to accomplish this, as well as administrative procedures to resolve any disputes. Federal law requires that each child must receive a program that meets his or her unique and individual needs. School districts must annually develop a written Individualized Education Program (IEP) that outlines the services to be provided with measurable goals. For some children, the IEP might involve classroom modification, or individual instruction or therapy. Other children might require placement in a specialized class or placement in a private school which specializes in serving children with a particular type of disability. Private schools can provide services on a day or a residential basis. Depending on need, children might be entitled to additional educational services over the summer months. Children may be eligible for ‘related services’ as part of their IEP. Related services may include speech therapy, occupational therapy, physical therapy, and school-based nursing services. Schools must document a child’s special education needs as well as his or her progress in school. Evaluations and other records can be helpful later in life to determine eligibility for adult services and other government assistance programs. ### Benefits from the Social Security Administration **Supplemental Security Income (SSI)** is available to people whose disabilities prevent gainful employment. In order to be eligible, an individual must not have greater than $2,000 in countable resources and less than approximately $800 in monthly income. Because the income and resources of parents are counted until the child turns 18, many people with disabilities will not qualify for SSI until they have reached the age of 18. After age 18, the income and resources of family members are not counted even if the individual continues to live at home. The SSI benefits usually ranges between $450 and $650 per month. The monthly among depends on a number of factors, including where the person lives and what other income he or she may have. Individuals who qualify for SSI automatically receive Medicaid. Medicaid pays for a wide array of services for people with disabilities and provides government-funded health insurance for children and adults with disabilities who have limited financial resources. Medicaid also provides government funding for long-term services and supports, including institutional care in nursing facilities and, in some cases, in non-specialized placements for people with disabilities. **Social Security Disability Insurance (SSDI)** pays benefits to covered workers who are unable to work because of a disability. After two years, the worker qualifies for Medicare. SSDI is typically given to workers who sustain injuries; however, sometimes, people with lifelong disabilities or mental illness qualify because of work history and experience a subsequent problem with continued employment. **Social Security** benefits are available to disabled dependents of a parent who collects Social Security benefits or who dies. Individuals who receive Social Security also receive Medicare. Social Security benefits count as income for SSI purposes and, in some cases, can reduce or eliminate SSI benefits. ## Health Care Insurance There are several types of insurance coverage for health care services: 1. Private insurance (including group health plans); 2. Public assistance (Medicaid and Medicare); and 3. State-funded health benefits plans. Because the coverage and appeal rights differ based on the type of plan and by State, it is important to read your member handbook and governing State law to determine what type of coverage you have and your respective appeal rights. **Private Insurance** is provided by your employer or obtained on your own. Generally speaking, private plans are governed by State law and are enforced, depending on the issue, by each State’s Department of Insurance. Services and procedures covered under private plans vary widely. Some private plans may require referrals for special services, or may require you to use certain providers to receive coverage. Additional costs or co-payments may be required if you elect to use providers outside your plan’s network. **Public Assistance Programs** include Medicaid (Individual State Plans, EPSDT Program, Managed Care, or Waiver Programs) and Medicare coverage. **Medicaid** is a federal-state entitlement program for low-income Americans. There are three basic groups of low-income people parents and children; elderly; and the disabled. To be eligible for Medicaid, one must have limited financial resources (that is, approximately $800 or less in monthly income and no more than $2,000 in countable assets). Each State’s **Medicaid State Plan** provides the following Mandatory Services: in- & out-patient hospital treatment; lab test & x-rays; EPSDT services; home healthcare; physician services; nurse midwife; family assistance; and nursing home for those over the age of 21. In addition, each State may elect to include any of the following 0ptional services: - Residential treatment centers - Optical appliances - Dental - Optometry - Chiropractic - Psychology - Podiatrist - Prosthetics & orthotics - Drugs during long-term care - Durable medical equipment - Hearing aides - Hospice - Transportation - Private duty nursing services - Personal care services - Clinic services - Therapies (ST, OT & PT) - Intermediate care (ICF/MR) - In-patient psychiatric care for under 21 & older than 65 Among the mandatory Medicaid services contained in the State Medicaid plan is the Early and Periodic Screening, Diagnosis and Treatment (EPSDT) Program. EPSDT services must be made available to every Medicaid-eligible child under the age of 21. Under EPSDT, the state must provide four types of screening services: medical, vision, dental, and hearing, and is required to provide coverage for medically necessary treatment. EPSDT covers a wide range of treatment services, including all Medicaid mandatory and optional services when they are medically necessary to “correct or ameliorate defects and physical and mental illnesses and conditions” regardless of whether such services are covered under the state plan. Covered services under the EPSDT Program may include: case management, home health care, personal care, private duty nursing, physical therapy and related services, respiratory care, hospice care, rehabilitation, durable medical equipment, hearing aids, eyeglasses, medically necessary orthodontic care, and personal care services. In order to obtain and maintain coverage, your treating physician must provide written documentation that the requested service is medically necessary. The agency or individual that provides services should always keep precise notes on your condition and continued need for the particular service. Without this documentation, medically necessary services are frequently reduced or terminated. **Medicaid-Funded Home and Community-Based Waiver Programs** – many States offer Medicaid-funded Waiver Programs that provide individuals with disabilities care in the home and community as an alternative to institutional care. **Medicare** is a partner program to Social Security, which provides a health and financial safety net to those 65 years and older and to those declared disabled for 24 months. Medicare is divided into two parts. Part A covers hospital and limited nursing care. Part B, which requires an extra premium, covers physician services, as well as a variety of therapies and other items. Medicare also has co-payments and deductibles. **Self-Funded / Self-Insured Plans** are insurance plans offered by a private employer, in which the employer (not an insurance company) assumes the risk of insuring its employees. Under such arrangement, the employer hires an insurance company to administer the plan and handle all of the claims. Self-funded plans have greater latitude as to what they do and do not cover under the plan. \*Note: Under most private insurance policies, there is a provision for continued dependent coverage for disabled dependent adults. Check your individual policy language to see what is required in order to extend your private dependent coverage of your disabled child. Typically, proof of disability is required. ## Estate Planning A Will establishes who will receive your property at death. It also establishes, where applicable, who will serve as guardian of your children. It establishes who will see that your wishes are carried out. Wills executed in one state are usually good in another. That being said, since the tax laws of each state vary, it is a good idea to have your Will reviewed by an attorney after you move into a new state. What happens if there is no Will? This is called intestacy. Contrary to what many believe, the government does not get your property if you die without a Will. The laws of the state in which you reside at the time of death determine who will get your property. Generally, this will mean that your next of kin will receive your property. Property will only go to the state if there is no next of kin. ## Special Needs Trusts Most parents want to leave assets to their children when they die; however, if a person with a disability receives assets, the results can be disastrous. The person will lose Medicaid and SSI, and the assets may also be subject to recoupment by Medicaid, or by the State if the person is receiving residential services. Learning this, some parents are inclined to disinherit the child with a disability, leaving everything to the non-disabled children with verbal instructions to use part of the inheritance for the benefit of the sibling with a disability. This is what is sometimes referred to as a ‘gift of moral obligation,’ and it can be equally disastrous. For example, the non-disabled child may not use the inheritance on their sibling’s behalf, and is under no legal obligation to do so. The spouse of the non-disabled child may want to use the assets for other purposes not related to the sibling with a disability. Even if the non-disabled sibling uses the assets exactly as the parents intended, they can be claimed by creditors, can have negative tax consequences on the non-disabled sibling, and can be subject to equitable distribution in the event of divorce. Instead, it is recommend that parents establish a special needs trust (SNT). A SNT can protect the assets while, at the same time, making the assets available to protect and enrich the life of the person with a disability without jeopardizing benefits available from the government. A SNT is a unique legal document that contains a set of instructions describing how assets placed into trust will be administered on behalf of a person with a disability. It must be carefully worded and is best written by professionals familiar with disability services and programs. Parents and other family members can use a SNT to hold assets for a disabled person. Even families with modest assets should establish a trust; typically, such trusts are not funded until one or both parents die. A SNT can be funded through life insurance or estate assets distributed through one’s Will. So long as the assets have never vested in the person with a disability, the SNT need not contain a provision reimbursing Medicaid and other providers. A trust can be established in a Will or as a separate document that is sometimes called a ‘living trust.’ Usually, it is a mistake to establish the trust in a Will when the chief beneficiary is a person with a disability. When the trust is funded, usually on the death of both parents, the trustee’s responsibilities begin. The trustee is designated by the donor when the trust is signed. The trustee can be a family member, a friend, a bank, a professional, or some combination, like a bank and a relative. Trust funds can be used to purchase independent professional opinions as necessary, fill in gaps in services, provide additional recreation and other amenities, pay for a private residential placement, or a vehicle used to transport the beneficiary of the trust. At the death of the beneficiary, any remaining trust property is disposed according to the instructions written in the trust document by the donor. For example, property might go to other family members or to a charity. ## Legal Documents to Aid in Decision Making A **Durable Power of Attorney** is a document an adult with capacity can create to appoint another, called their attorney-in-fact or agent, to perform duties and make decisions concerning their own financial business when they are not able to do so generally during periods of incapacity. A **Medical Directive**, also referred to as an Advance Directive or Living Will, is a similar document to the durable power of attorney, but deals with medical decision making, including end-of-life decision making, when one is incapacitated and unable to do so for themselves. The agent or proxy is to make decisions that the individual would have wanted with regard to their medical care. ## Guardianship In the eyes of the law, even those with a significant developmental disability is legally permitted to make decisions on his or her own behalf at the age of 18. Therefore, if due to a disability, a person is not capable of making his or her own decision, it is necessary to secure the judicial appointment of a guardian. A guardian is someone appointed by the court to make decisions on behalf of another person who cannot make decisions independently. There are two types of guardians: a guardian of the person usually has the power to make decisions concerning living arrangements, day programs, medical care, and other personal decisions. A guardian of the property usually has the power to make decisions regarding whether and how to sell, trade, or invest property. They do not, however, have power over assets held in trust unless the guardian is also the trustee. In order to have this authority, a court must first find that the person cannot make decisions about him/herself or his/her property. If a court determines this to be the case, it will appoint someone to take on this responsibility; in most cases, one or both parents. The court may also appoint a brother or sister to serve as guardian with the parents, or alone, after the parents have died. Once they have secured guardianship for an adult child, parents can appoint a successor guardian in their will, or can temporarily delegate guardianship through a written document called a power of attorney. The guardian’s job is to make sure that the person with a disability or mental illness is to make decisions in the best interest of the person under guardianship and make sure he/she is safe. The guardian does not bear any risk for the person’s acts or debts, and is under no legal obligation to provide direct care to the person. There is no ‘downside’ to serving as a guardian. ### About Valerie A. Powers Smith **Valerie A. Powers Smith**, Partner, Slovak Baron Empey Murphy & Pinkney LLP with offices in Palm Springs and Indian Wells, CA; Princeton, NJ; and Manhattan, NY. She has over twenty years of experience in the field of special needs and elder law including the following highly specialized practice areas: health care insurance, short-term and long-term disability insurance, Medicaid, Medicare, special needs trusts, trust administration, estate planning & administration, guardianships and conservatorships. Valerie also practices in the area of estates, trusts, and probate. Over the years, Valerie has concentrated her legal work in the area of health care law and has vigorously advocated for families and people with disabilities to gain medically necessary care from private insurance companies, Medicaid, Medicare, and other health insurance providers. She has additionally focused her practice in the areas of special needs trusts and estate planning and routinely advise families, executors, and corporate trustees on the area of special needs law and the administration of the same. She has additionally focused her practice in the areas of trusts, special needs trusts, and estate planning and routinely advise families, executors, and corporate trustees on the area of special needs law and the administration of the same. Valerie has additionally focused on complex matters including same-sex and multi-generational planning. Valerie has written extensively on a variety of disability law topics, has co-authored several publications on accessing adult services, Medicaid, estates and trusts, and health insurance; and is a regular contributor to several newsletters of disability-based advocacy organizations throughout New Jersey, Pennsylvania and California. She has also lectured for disability-related groups and legal organizations throughout Pennsylvania, New Jersey, California, and D.C since 1997. --- ### [Estate Planning](https://www.mitoaction.org/planning-and-preparation/estate-planning/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Planning & Preparation](https://www.mitoaction.org/planning-and-preparation/ "Planning & Preparation") # Estate Planning Estate planning is a process of putting a plan into place and goes far beyond the creation of a will and trust documents. It is about documenting how your personal affairs would run if you were incapacitated or deceased. ![](https://www.mitoaction.org/wp-content/uploads/2024/07/Woman-meeting-with-an-attorney-to-create-an-Estate-Plan-1024x683.webp) *This content has been provided by Annette Hines, JD.* ## What is estate planning? Estate planning is a process of putting a plan into place and goes far beyond the creation of a will and trust documents. It includes assets, contingency plans, roles for various people—the same kind of planning that would occur if you were running a small business. It is about documenting how your personal affairs would run if you were incapacitated or deceased. Planning can be overwhelming, and special needs families are already exhausted, but it does give you a big say in what happens to you, your loved one, and your assets when you cannot actually say what should happen next. If you do not make a plan, your local courts will make a plan for you. State legislatures create and enforce plans for people who don’t have a written plan. Assets can end up with people you do not expect/don’t want, and you can lose out on opportunities to protect assets for your loved ones in addition to saving taxes and other good benefits. Most common documents for estate planning: - Will - Trusts - Durable Power of Attorney (for financial decisions) - Health Care Proxy (for health care decisions) - HIPAA authorization (medical records release—allows communication between third parties and medical providers) - Guardianship and conservatorship appointments and nominations—may be able to name your successor if you currently are a guardian or conservator to someone in your family. ## Wills A will specifies distributions of assets and nominates a personal representative/executor who makes sure that the terms of the will are followed. A will may govern all, some or none of your assets. You have virtually complete control over how that happens. A good estate plan can actually take a look at all of your assets and figure out which should go through probate and which should go in a different direction. A will in many states can nominate a guardian or conservator of minor or incapacitated child. Wills only take effect once you die and only covers assets that will go through Probate. Many people think avoiding probate is the most important estate planning objective when, in fact, it is probably the least important. Sometimes we want to use probate to make sure assets get left in a certain way. What matters when planning is to hyperfocus on what your goals are and concentrate on getting there. There are many paths to get to that goal. The probate process often makes people nervous because it has to do with going to court. If you can avoid court, that is a great goal as it keeps your private information private. All states have different rules about whether a will must go through Probate. The will must be allowed by petitioning to the court, and then the personal representative/executor will be appointed. The personal representative/executor must do the following things: 1. Gather assets and figure out what was owned at death 2. Give notice to creditors, heirs at law and beneficiaries of any trusts 3. Need to pay any income and estate taxes 4. Pay debts of decedent 5. Make distributions to beneficiaries 6. File account and close probate. Non-probate assets are most of what most people own 1. Any jointly-owned assets (ex.: bank account) 2. Assets with death beneficiary designations with people still alive to inherit them (ex: bank & investment accounts, qualified retirement plans, life insurance, annuities, some savings bonds) 3. Real estate where ownership interest is for life and a living person has a remainder interest 4. Any assets owned by a Trust—if you have funded trusts during your lifetime, those assets will not go through probate. ## Trust Many people think trusts are complicated, but they are not for just the Rockefellers anymore. You do not need to have a ton of assets to take advantage of trusts. It results in a private process instead of a public one. Only the people involved in the trust get to know what is in them; if they go through the will, then they become part of the public record and can be searchable by creditors and other interested parties. Trusts can manage assets during your lifetime and even after you die. It’s a good way to manage assets for people that you love—“reaching through the grave.” You can fund a trust with any assets you have, including real estate, cash, retirement funds, life insurance—there is no limit to what you can put in there. They also can provide asset protection for irresponsible or vulnerable beneficiaries from themselves. They can do some estate tax planning and reduce or eliminate any estate taxes that may need to be paid. They also can plan for long-term care needs while taking into account a disabled person’s public benefits. Trusts can also provide for any charitable intentions—if you can dream it, we can write it in a trust. Anyone can be your trustee, and you get to say via planning who can manage things during your lifetime as well as once you are gone. You can be your own trustee; you can also choose friends, family members, institutions (banks and trust companies), or sometimes beneficiaries or guardians. There are pros and cons to this decision. It’s a very individual decision. #### Revocable Living Trust (“RLT”) Revocable living trust is where your will pours over into a trust. Anything put into the trust during your lifetime is not governed by a will, but some people decide not to fund the trust until the time of death. If the latter, your estate goes through probate and the trust will be funded at that time (after death). It can provide for centralized asset management during your lifetime; if you are not able to manage your assets, this is a good way to have someone help you with that. It works much better than powers of attorney, which are financial contracts with an agent who can do financial transactions for you, because powers of attorney do not work well at the bank, especially as you get older. Banks are afraid to take the power of attorney and allow you to use it because they are concerned it is not still valid. They are much less skittish when it comes to trusts. RLT cannot manage IRAs and qualified retirement plans. They can also avoid probate if funded during your lifetime. They also can be estate tax planning vehicles and can reduce or eliminate estate taxes for married couples. Estate tax is a death tax levied on your estate before you can pass it along to your beneficiaries. Most people find it pretty appalling, especially because you have already paid income tax, sales tax and capital gains tax throughout your life. The federal estate tax rate is 40%. Federal law favors married couples, allowing you to implement this type of estate tax planning in a RLT if you are married. You can also provide for success of the trustee(s). RLT’s can provide for lifetime asset protection, divorce protection, and public benefits protection. I can not provide asset protection for you, but if you leave assets in trust for your children and they keep it in trust, then that money can be protected from creditors and from divorce, depending on state law. The next generation also does not have to pay estate tax on the money left in trust to them. A RLT can provide long-term care for you children and beneficiearies. ## Power of Attorney Power of Attorney names an agent in the event that your were disabled, or unable to legally made decisions for yourself. Power of Attorney documents are governed by state law. As soon as a Powers of Attorney document is signed, the person named as the agent will have the same set of powers as you do. Powers of attorney may be revoked or overruled by you at any time, either verbally or in writing. A Power of attorney document is only good during someone’s lifetime. ## Health Care Proxies This is a springing power which goes into effect when the physician says that the patient cannot make or communicate informed medical decisions. Because of that, it is not effective for day-to-day decisionmaking. Generally, Health Car Proxies are not helpful for situation where health care decisionmaking is urgently needed. They are best used in situation where someone can make their own health care decisions, generally speaking, except in emergencies. If you don’t have a designated health care agent or power of attorney agent, someone has to go to court to obtain guardianship and/or conservatorship to have the authority to make legal, medical and personal decisions for you. However, most hospital forms making these designations are effective about 95% of the time. They are better than not having anything. Proper planning helps avoid that unseen possibility. ## HIPAA Authorization A HIPAA authorization allows people to get medical information and discuss that information without anyone needing to be incapacitated. This is very important when children are in college; otherwise, you would need a release for their personal health information (PHI). Having a HIPAA authorization that does not require incapacity is a very good thing once children are over the age of 18. ## Other health-care related documents (state-specific) 1. Advanced Directives 2. Living Wills 3. Do Not Resuscitate/Intubate orders ### Special Needs Trusts There are two kinds of Special Needs Trusts. Determining which trust to use really depends on where the money is coming from that is being used to fund the trust. - Third-Party Trusts – funded with other people’s money - First- Party Trusts – for disabled people who have their own money or come into money at some point and need to still qualify for public benefits. Third-Party trusts do not have a lot of restrictions on them, but First-Party Trusts (also known as D4A trusts) are governed very tightly by Social Security and Medicaid rules. They have specific rules about who can create them and they can only be created and funded until someone is 65 years of age. It is a great way to fund a trust with assets of a disabled person and still maintain public benefits, especially when assets are not substantial. Usually you see these trusts funded with smaller amounts of money that would wreak havoc with public benefits, but wouldn’t be enough to provide for that person during their lifetime. Why are special needs trusts important for estate planning? There are many public benefits that have an asset test. Social security and many Medicaid benefits have a $2000 assets limit. Any assets that you own over $2000 is going to disqualify you from many federal public benefits that are sorely needed for people with special health care needs and people with disabilities. Special needs trusts are also important for managing assets of vulnerable beneficiaries and offer creditor protections, divorce protections and protection from other outside threats as well. What makes a Special Needs Trust into a Special Needs Trust? 1. Beneficiary must have a disability 2. “Supplementing but not supplanting”; that means these trusts are meant to supplement public benefits but not replace them. The main idea of social security is to provide benefits for disabled adults who are impoverished and are only providing basic necessities. A Special Needs Trust should be flexible, as sometimes it is ok to affect public benefits or to use trust money instead of public benefits. A well-drafted trust is going to manage that balance just fine. You don’t want to tie your trustee’s hands. In many trusts, there is a standard called HEMS: Health, Education, Maintenance and Support. HEMS provides the beneficiary with an opportunity to demand a distribution from the trustee. You cannot have that in a Special Needs Trust and a it must have a wholly discretionary standard instead. If you already have a Special Needs Trust in your planning, make sure you do not have a HEMS standard in your existing trust. Otherwise, this will create problems when you have to turn over the trust document to a public benefits office for review in your area (which is permissible and required for continuation of public benefits). Special Needs Trust are also required to have a Spendthrift which provides that creditors cannot obtain the trust assets, and they cannot be put up as collateral for anything. #### Special Needs Trusts—are they right for you? They have so much more going for them than just being protection for public benefits due to all of the additional protections and management of assets. There really is no reason not to use them. Often, if people are high functioning and do not have intellectual issues, it is tempting to say they do not need a trust. Best to do planning that can include a trust if you need it and not include SNT if not necessary. Finally, if the trust is funded and child does not need it, then the money can just be distributed to them; the trustee has the discretion to do that. Generally, there is no stigma attached to the SNT; generally, dependents are already receiving special education services or other services that clearly identify them as a person with special needs. #### Trustees It is important to have guidance when selecting trustees. Many people want to run automatically to other children, and it may be a good option, but it is important to think about how typical children are dealing with having a lifetime of responsibility with their disabled sibling. Also, banks and trust companies are not great for acting as trustees for SNTs, for they don’t really understand them, and they get really nervous about not wanting to mess them up. They also have really high minimums. You want to think about how that will work for you. Perhaps it makes sense to have different trustees for different phases of life and different situations. ## Frequently Asked Questions **When is the best time to start the estate planning process? Do you need a certain amount of assets, or is this something everyone should be doing?** There is no right time; being a special needs family is overwhelming and you can only do what you can do. Best to start basic and work your way up from there. If you have someone in your family with special needs that you care about, you should really be thinking about doing your planning now. It is important to address these issues before death or your own disability strike. **If you have full guardianship of a disabled child, does that cover durable power of attorney, health care proxy and HIPAA needs, or do you also need those separate documents?** Depends on your state law, but assuming full guardianship means the same thing in your state, then yes, that does cover financial, health care and personal decisionmaking. Some states have split up conservatorship and guardianship (like in Massachusetts), and you must have specific authority over the financial as well as the person under two separate orders from the judge, but in general, you don’t need those other documents if you have guardianship. Guardianship trumps all of that and is a much better way to go because it does not include any shared authority; it is very clear who is in charge of making the decisions. **Special Needs Trusts; if parent dies and special needs daughter is in the will, and in the will, parent specifies that the funds will not go to her but will go to SN trust, must that SN trust be set up before parent dies, or is there an abeyance period where the trust can be set up for her after death of the parent so funds can come in as a third-party conveyance as opposed to first-party (due to her inheritance)?** In some cases, you can put language in the will that allows the executor and/or trustee to create the trust for you – this is very state law-dependent. For the most part, though, if you name a trust in your will, it has to exist, so you have to have the trust created in order to name it. By taking care of this in advance, you can use a third-party trust that does not have any payback provisions to the state instead of requiring her to create a first-party trust. Remember also that a trustee or executor might not create a trust exactly as you would have wanted it, so you might want to think about that too. **How long does it take from first visit to lawyer until the special needs trust is in place?** Estate planning is a process. Most attorneys work differently, and clients can be very different too. Some people require many meetings to figure out what they want, while others know right at the outset. The average is 6-8 weeks for a case, including process of client understanding what they really want. **Adult mito patient who is disabled; past 65; has a trust. At the time trust was set up, did not know that there was such a thing as a special needs trust, and attorney did not advise caller about it. Caller has a regular trust—is it too late to convert to Special Needs Trust? Very concerned about medical expenses associated with mitochondrial disease, specifically the Mito Cocktail. Would something like the Mito Cocktail need to be mentioned specifically into the Health Care Power of Attorney so that Caller would not be denied money for Mito Cocktail?** Trusts created and funded prior to certain laws going into place are grandfathered in and operate under different rules. Caller should sit down with attorney to see whether the situation fits into one of those categories. As for Mito Cocktail, would not need to be in Health Care Proxy or Power of Attorney; those are general powers and do not need to address certain drugs, etc. It can address experimental procedures, but it is more important to let your representative know exactly what you would want. It might not be easy for them to go with the norm. Mito is very individual, and what works for one does not necessarily work for another. Your agent is not going to be able to guess what is important to you, so may want to consider writing things down for them, before you hand off power to them. **What are some good resources or networks for finding an attorney who can help with a special needs trust in a particular state?** There are three attorney organizations: 1. National Academy of Elder Law Attorneys (also have attorneys who are well-versed in special needs planning) 2. Academy of Special Needs Planners 3. Special Needs Alliance These are member organizations, so people self-select in. May not be the best avenue in your state. If you do use them as a resource, be sure to ask them what percentage of their practice is Special Needs vs. Elder Law. Also ask if they do more than just write trusts. Important to have an attorney who understands social security and Medicaid Rules, guardianship—planning has much more to do with just documents. Need to get an attorney who has a handle on all of the facets of a special needs plan. --- ### [Mobility Devices](https://www.mitoaction.org/planning-and-preparation/mobility-devices/) **Published:** October 17, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Planning & Preparation](https://www.mitoaction.org/planning-and-preparation/ "Planning & Preparation") # Mobility Devices Mobility devices are important for people with Mito or any neuromuscular diseases, and can help improve safety and quality of life. ![](https://www.mitoaction.org/wp-content/uploads/2024/07/Man-with-mitochondrial-disease-using-mobility-devices-1024x683.webp) Mobility devices are important for people with Mito or any neuromuscular diseases, and can help improve safety and quality of life. Here are some of the most common mobility devices, along with pros and cons for each. Each device is different, it’s up to you and your healthcare team to figure out which devices will best fit your needs. ## Mobility Devices – Canes ![](https://www.mitoaction.org/wp-content/uploads/2023/01/Mobility-Equipment-Cane-683x1024.jpg)#### Single-point Canes and Walking Sticks **Best choice for:** people with good upper body strength, and good/fair lower body strength, mild balance problems. **Benefits:** inexpensive mobility devices, easy to purchase at drug stores, department stores, and medical suppliers. Wide variety of styles, some canes fold for easy storage-great for people with intermittent weakness or balance problems because they can be stored virtually anywhere and easily unfolded when needed. **Drawbacks:** weakness or dizziness must be mild; so not offer enough stability for moderate to severe symptoms. Weight limits apply, especially for folding canes. A large percentage of people using canes/walking sticks are using them incorrectly and are using the wrong size. ![](https://www.mitoaction.org/wp-content/uploads/2023/01/Mobility-Equipment-Quad-Cane-683x1024.jpg)#### Quad cane **Best used by**: same as single point cane or walking stick, but can be used by a person with moderate dizziness or lower body weakness**.** Cane has four contact points that give the user extra stability. **Benefits:** same as single point canes, except quad canes do not fold. **Drawbacks:** same as single point canes; weight limits still apply, but can accommodate higher weights. ## Mobility Devices – Crutches ![](https://www.mitoaction.org/wp-content/uploads/2023/01/Mobility-Equipment-Crutches-683x1024.jpg)### Common Axillary Crutch **Best used by:** People with very good upper body strength who need a mobility aid on a short-term or intermittent basis. **Benefits: Inexpensive and readily available,** When used correctly, can support 80%-to 100% of a person’s body weight, enabling them to avoid weight bearing one lower extremity. **Drawbacks:** Does not allow hands to be used while walking, requires a lot of upper body strength and endurance. Crutch axillary pads and hand grips are often made of latex, which can cause serious allergic reactions. If used improperly, the person can sustain nerve damage from axillary (armpit) pressure. ![](https://www.mitoaction.org/wp-content/uploads/2023/01/Mobility-Equipment-Forearm-Crutches-683x1024.jpg)### Forearm Crutches Also called Canadian or Lofstrand Crutches **Best Used by:** people with mild-moderate weakness in both upper and lower extremities **Benefits:** less cumbersome than axillary crutches, able to maneuver easier than with a walker, encourages a more normal gait, user is able to momentarily free a hand to open a door or pick up a small item while the wrist cuff remains in place. **Drawbacks:** Requires upper and lower body endurance, crutches only hold 40-50% of body weight so individual must be fully weight-bearing; ## Mobility Devices – Walkers ![A walking frame is a great mobility device option for people with balance issues.](https://www.mitoaction.org/wp-content/uploads/2023/01/Mobility-Equipment-Walker-683x1024.jpg)### Walking Frame A Walking Frame (commonly called a “standard walker”) is a mobility device with three-sided metal frame that may have wheels, plastic “skis” for gliding on carpets or floors, or rubber cane tips. Comes in foldable and fixed models. **Best Used By:** people with moderate to severe balance problems, mild-moderate upper extremity and moderate lower extremity weakness**.** Recommended for people who need assistance ambulating even short distances, such as bedroom to bathroom. **Benefits:** offer the most stability of all mobility devices. Some models fold completely flat for storage or transportation. Some walkers can be turned around and placed over the toilet to provide a sturdy grab bar configuration to assist with standing. **Drawbacks:** Walking speed is slow. Rubber tips or skis provide much greater stability than wheels, but result in the need to completely lift the walker with each step (4 rubber tips, or 2 tips/2 skis or wheels) or slide the walker forward on the floor or carpet. Not designed for use on grass or uneven terrain, do not include a seat for resting. ![Mobility devices like wheeled walkers give mito patients stability and a place to rest.](https://www.mitoaction.org/wp-content/uploads/2023/01/Mobility-Equipment-Wheeled-Walker-683x1024.jpg)### Wheeled Walker A Wheeled Walker (commonly called a “rollator”) has either 3 or 4 wheels and a built-in seat. Most designs have hand brakes that can be used to improve control of the walker and also to lock the wheels when necessary (such as when sitting on the seat or standing in place.) **Best used by:** Rollators are designed for those who have some mobility issues however can still get out and might require some extra rest for their endurance by using the seat. **Benefits:** Provide much more mobility than a standard walker, and can be used inside or outside the home. **Drawbacks:** The addition of wheels make the rollator less stable than a standard walker. --- ### [Vehicle Modification](https://www.mitoaction.org/planning-and-preparation/vehicle-modification/) **Published:** July 19, 2019 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Planning & Preparation](https://www.mitoaction.org/planning-and-preparation/ "Planning & Preparation") # Vehicle Modification Vehicle modifications like wheelchair ramps and lifts can make a van or other car more accessible. ![](https://www.mitoaction.org/wp-content/uploads/2023/01/Vehicle-Modification-Van-with-Chair-Lift-1024x683.jpg) Vehicle that have been modified with ramps or lifts can be much more accessible for people using mobility devices and wheelchairs. Although existing vehicles can often be retrofitted with these modifications, it’s much easier and faster to find a new or used vehicle that has already been modified. Purchasing an accessible vehicle is a very important and often complicated process. For many families, this is an emotional milestone, a visible sign that a family member has a moderate to severe, long term disability. Self-propelling a manual wheelchair for any length of time is extremely tiring and requires an incredible amount of upper body strength and endurance, so most wheelchair users who have Mitochondrial disease require a power chair or scooter, if independent mobility is the goal. Power wheelchairs for adults can weigh up to 300 lbs even while unoccupied, so transportation in a standard vehicle is usually out of the question. Accessible transportation is crucial for a wheelchair-user’s independence, safety, and quality of life. ## Things to consider when exploring vehicle modification There are many factors involved when choosing to add vehicle modifications to an existing vehicle or purchase an already adapted vehicle. Before visiting dealers or searching online for used vehicles, several questions should be considered: - Who uses a wheelchair in the family? Are there more than one family members using wheelchairs? Will the user remain in the wheelchair while traveling? How many other passengers will be using the vehicle on a regular basis? - Try to imagine not only your family’s current needs, but also potential changes over at least the next 10 years. Is it possible for the wheelchair user to someday obtain a driver’s license? Does the user need to be able to enter the vehicle and secure the wheelchair without assistance? - What are your family member’s travel needs; is the vehicle necessary for transportation to and from work or school? How frequently does your family travel for medical appointments, and how far from home are you traveling? Is public transportation available and appropriate for your family? - Can your family afford to purchase a new accessible vehicle with a traditional vehicle loan? Are you considering used vehicles as well? Will you need financial assistance in the form of grants and/or loans specifically for individuals with disabilities? Once you have a rough idea about your transportation needs, it is time to begin researching your vehicle modification options. The National Highway Traffic Safety Administration offers an overview of accessible vehicle options, and addresses the factors listed above. You can find this information [here](https://www.nhtsa.gov/road-safety/adapted-vehicles). [Mobility Works](https://www.ride-away.com) is a company that sells, rents, and leases accessible vehicles, but it provides lots of general information about conversion possibilities, including diagrams of seating options. [The Mobility Resource](https://www.themobilityresource.com/financing-handicap-accessible-vehicles/oem-rebates/) has provided a comprehensive list of rebate programs offered by vehicle manufacturers. **Is vehicle modification necessary for transportation to work or school?** Every state has a program for vocational training and accommodations for individuals with disabilities. Although these programs cannot pay for the vehicle itself, they can pay for all modifications and driver training if these are written as goals for vocational planning. --- ### [Weekly Support Calls](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/weekly-support-calls/) **Published:** March 14, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2024/07/Weekly-Support-Calls-Cover-Image-1024x1024.png)Join MitoAction and other patients, caregivers, and loved ones, who are on their diagnostic journey or are already diagnosed with Mito, for our confidential weekly support calls every Friday at 12:00 p.m. EST. Everyone is welcome! *Please note that on weeks when we host our “Monthly Expert Series” our support group time will bump back to 1:15pm EST. (Reminder: your link will stay the same, even though the time is different.)* [Register for our upcoming Weekly Support Calls](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9#/registration) --- ### [Planning & Preparation](https://www.mitoaction.org/planning-and-preparation/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # Planning & Preparation ##### Being prepared is an important way patients with mito can take control of their lives. At MitoAction, we’ve created this information to help relieve some of the anxiety and help families plan and prepare. When you have a rare disease, planning ahead and being prepared in critical. Living every day with mitochondrial disease as an adult patient or a parent caring for an affected child can be completely consuming and overwhelming. Many of us forget or put off thinking about the future, especially when the future feels so uncertain. MitoAction hopes this information can relieve some of the anxiety and help families be well prepared. ![](https://www.mitoaction.org/wp-content/uploads/2023/01/Husband-and-Wife-looking-up-mitochondrial-disease-information-on-the-internet-1200x600.jpg)#### Health Insurance Learn more about how to take full advantage of your health insurance and document things to prevent future issues. [Learn More](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/children-with-mito/disability-insurance-laws/) ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Mens-Support-Call-Man-meeting-with-others-on-Zoom-1200x600.webp)#### Disability Benefits Disability benefits may be available to provide mito patients and families with critical services and financial support. [Learn More](https://www.mitoaction.org/planning-and-preparation/disability-insurance/) ![](https://www.mitoaction.org/wp-content/uploads/2024/07/Man-with-mitochondrial-disease-using-mobility-devices-1200x600.webp)#### Mobility Devices Mobility devices are important for people with Mito or any neuromuscular diseases, and can help improve safety and quality of life. [Learn More](https://www.mitoaction.org/planning-and-preparation/mobility-devices/) ![](https://www.mitoaction.org/wp-content/uploads/2023/01/Vehicle-Modification-Van-with-Chair-Lift-1200x600.jpg)#### Vehicle Modification Vehicle modifications like ramps and wheelchair lifts can make a van or other car more accessible, although it can be a complicated process. [Learn More](https://www.mitoaction.org/planning-and-preparation/vehicle-modification/) ![](https://www.mitoaction.org/wp-content/uploads/2024/07/Woman-meeting-with-an-attorney-to-create-an-Estate-Plan-1200x600.webp)#### Estate Planning Estate planning puts a plan into place and it dictates how your personal affairs would run if you were incapacitated or deceased. [Learn More](https://www.mitoaction.org/planning-and-preparation/estate-planning/) ![](https://www.mitoaction.org/wp-content/uploads/2024/07/Young-boy-and-his-mother-meeting-with-a-doctor-1200x600.webp)#### Medical Child Abuse Unfortunately, many mito families get accused of Munchausen Syndrome, Munchausen Syndrome by Proxy (MSBP) and Medical Child Abuse allegations. [Learn More](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/) --- ### [MitoAction Programs](https://www.mitoaction.org/programs-support/mitoaction-programs/) **Published:** March 16, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # MitoAction Programs ##### MitoAction Programs create positive impacts in the lives of people living with mitochondrial disease as well as their loved ones. Many MitoAction Programs have been dedicated to the loved ones of families affected by mito and their legacies honored through their continued impact on others. For more information about our programs, click on the links below. #### Dalia’s Wish Dalia’s Wish is MitoAction’s Wish Trip program, and is geared towards families with children living with mito. Dalia’s Wish gives mito patients and families a chance to make lasting and meaningful memories. [Learn More](https://www.mitoaction.org/programs-support/mitoaction-programs/dalias-wish/) #### Marcel’s Way Marcel’s Way offers financial assistance to families who need it most to ease the burden of medical care. Grants can be used to assist with the high cost of medications, services, and medical equipment. [Learn More](https://www.mitoaction.org/programs-support/mitoaction-programs/marcelsway/) #### The Matthew Harty Camper Fund The Matthew Harty Camper Fund programs include academic scholarships and summer camp opportunities to give children living with mito the chance to “just be a kid.” [Learn More](https://www.mitoaction.org/programs-support/mitoaction-programs/mhcf/) #### MitoSantas MitoSantas is a seasonal program that gives back to children around the holidays. Our goal is to help make this time of year extra magical for our youngest members of the mito community. [Learn More](https://www.mitoaction.org/programs-support/mitoaction-programs/mito-santas/) #### MitoArtisan’s Playtime MitoArtisan’s Playtime is a place for artists to create, connect and heal with other artists in our community. This class is a safe place for **all** of our mito patients and families to explore! [Learn More](https://www.mitoaction.org/programs-support/mitoaction-programs/mitoartisans-playtime/) #### MyMito App Whether you need help managing your mitochondrial disease symptoms or if you care for someone with mitochondrial disease, MitoAction’s MyMito App is here for you! [Learn More](https://www.mitoaction.org/mymito/) --- ### [About MitoAction](https://www.mitoaction.org/about-us/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # About MitoAction MitoAction is working to improve the quality of life for children, adults, and families living with mitochondrial disease. ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Expert-Series-Presenter-in-front-of-a-group-in-a-meeting-room-1024x683.webp) MitoAction is a nonprofit organization founded by patients, parents, and Boston hospital healthcare leaders who had a vision of improving quality of life for children and adults with mitochondrial disease. The organization began in 2005 as an idea and has evolved from a small New England support group to a dynamic, active service organization helping thousands of patients and families. Despite the growth of the organization, the mission remains the same: to make a measurable impact in the lives of those who are affected by mitochondrial disease. ![MitoAction is dedicated to helping improve quality of life for children and adults with mitochondrial diseases.](https://www.mitoaction.org/wp-content/uploads/2023/01/2018-Mito-Energy-Walk-and-5K-Volunteers-working-at-a-table-1024x683.jpg)Originally founded as the Mitochondrial Disease Action Committee, the organization officially changed its name in 2008 to MitoAction. ## MitoAction’s Mission MitoAction’s mission is to improve the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, clinical research initiatives and by granting wishes for children affected by mitochondrial disease. To do this, MitoAction’s goals include: - To improve quality of life for adults and children affected by mitochondrial disease. - To internationally raise awareness about mitochondrial disorders, and their relationship to other diseases. - To provide specific and practical materials that help patients to manage their symptoms - To aggregate and connect the international mitochondrial disease community - To engage pharmaceutical industry working toward therapeutic approaches to mitochondrial disorders. - To create tools which empower patients and caregivers to be advocates for themselves or their children. - To create unique experiential opportunities for adults and children affected by mitochondrial disease. We strive to offer comprehensive, up-to-date, [expert resources](https://www.mitoaction.org/education/monthly-expert-series/ "Monthly Expert Series"), information, and [support](https://www.mitoaction.org/programs-support/patient-and-family-support/ "Patient & Family Support") at no cost to any patient, family, clinician, educator, or member of the community. We continue to seek multiple ways to offer information such that the resources are accessible and user-friendly for people of all abilities. We foster relationships with the [scientific, academic, research and business community](https://www.mitoaction.org/about-us/meet-our-partners/ "Meet Our Partners") in order to create sustainable support for the mission of MitoAction. ## MitoAction’s Vision MitoAction’s vision is to create a [community of support](https://www.mitoaction.org/programs-support/patient-and-family-support/ "Patient & Family Support") that reaches every child, adult, and caregiver affected by a mitochondrial disease. Effective awareness and advocacy will guarantee that every patient has access to specialized care and a network of support and information that improves the journey for every individual affected. For more information or to get involved with MitoAction, [send us an email on our Contact page](https://www.mitoaction.org/about-us/contact-us/). [](https://www.mitoaction.org/history/)[](https://www.mitoaction.org/history/) --- ### [Meet Our Partners](https://www.mitoaction.org/about-us/meet-our-partners/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") MitoAction is proud to partner with organizations and corporations that share our passion of supporting families affected by mitochondrial disease. Our partners work collaboratively with our organization to help fulfill our mission and to inspire and motivate our community to take action in our fight against mitochondrial disease. We would like to thank the following partners for their generous support of MitoAction and the incredible mito community that we serve: [![](https://www.mitoaction.org/wp-content/uploads/2024/04/1.png)](https://dinnohealth.com/actonpharmacy/)[![](https://www.mitoaction.org/wp-content/uploads/2024/04/2.png)](https://www.nhl.com/bruins/community/foundation/)[![](https://www.mitoaction.org/wp-content/uploads/2024/04/3.png)](https://www.care3.co/)[![](https://www.mitoaction.org/wp-content/uploads/2024/04/4.png)](https://www.shopuslast.com)[![](https://www.mitoaction.org/wp-content/uploads/2024/04/5.png)](https://www.instagram.com/corvusvodka/)[![](https://www.mitoaction.org/wp-content/uploads/2024/04/6.png)](https://deepriversnacks.com/)[![](https://www.mitoaction.org/wp-content/uploads/2024/04/7.png)](https://www.fourrosesbourbon.com/)[![](https://www.mitoaction.org/wp-content/uploads/2024/04/8.png)](https://www.fuelforfire.com/)[![](https://www.mitoaction.org/wp-content/uploads/2024/04/9.png)]()[![](https://www.mitoaction.org/wp-content/uploads/2024/04/10.png)](https://informnetwork.org/)[![](https://www.mitoaction.org/wp-content/uploads/2024/04/11.png)](https://www.kendrascott.com)[![](https://www.mitoaction.org/wp-content/uploads/2024/04/12.png)]()[![](https://www.mitoaction.org/wp-content/uploads/2024/04/13.png)](https://www.ptcbio.com/)[![](https://www.mitoaction.org/wp-content/uploads/2024/04/14.png)]()[![](https://www.mitoaction.org/wp-content/uploads/2024/04/18.png)](https://sevensteprpo.com/)[![](https://www.mitoaction.org/wp-content/uploads/2024/04/15.png)]()[![](https://www.mitoaction.org/wp-content/uploads/2024/04/16.png)]()[![](https://www.mitoaction.org/wp-content/uploads/2024/04/17.png)](https://www.ultragenyx.com/) --- ### [Newsletter Signup](https://www.mitoaction.org/newsletters/newsletter-signup/) **Published:** December 21, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") "\*" indicates required fields Facebook This field is for validation purposes and should be left unchanged. Name\* First Last Email\* Phone Address Street Address City StateAlabamaAlaskaAmerican SamoaArizonaArkansasCaliforniaColoradoConnecticutDelawareDistrict of ColumbiaFloridaGeorgiaGuamHawaiiIdahoIllinoisIndianaIowaKansasKentuckyLouisianaMaineMarylandMassachusettsMichiganMinnesotaMississippiMissouriMontanaNebraskaNevadaNew HampshireNew JerseyNew MexicoNew YorkNorth CarolinaNorth DakotaNorthern Mariana IslandsOhioOklahomaOregonPennsylvaniaPuerto RicoRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUtahU.S. Virgin IslandsVermontVirginiaWashingtonWest VirginiaWisconsinWyomingArmed Forces AmericasArmed Forces EuropeArmed Forces Pacific State ZIP Code EthnicityCaucasianAfrican AmericanLatino or HispanicAsianSoutheast AsianNative AmericanNative Hawaiian or Pacific IslanderTwo or MoreOther/UnknownPrefer not to state Primary LanguageArabicEnglishSpanishBengaliBhojpuriChinese- MandarinChinese – Wu or ShanghaineseChinese – Yue or CantoneseFrenchGermanGujaratiHausaHindiIgboItalianJapaneseKoreanMarathiPersian IranianPortuguesePunjabiRussianTagalogTamilTeluguTurkishUkrainianUrduVietnameseOther Genderman/boywoman/girltransgendernon-binaryagendergender non-conforminggender fluidgenderqueertwo spiritothernone of theseprefer not to state Pronounhe/him/hisshe/her/hersthey/them/theirve/ver/visxe/xem/xyrze/zie What is your connection to mito?\* Patient Parent Spouse Caregiver Son Daughter Sibling Grandparent Grandchild Aunt Uncle Cousin Niece Nephew Friend Teacher/Educator Medical Professional Physician Nurse Genetic Counselor Social Worker Researcher Industry Rep Other Diagnosis TypeGenetically ConfirmedClinical DiagnosisUndiagnosed What is your diagnosis? Alpers’ Disease ACAD9 Deficiency Autosomal Dominante Optic Atrophy (ADOA) Barth Syndrome CACT Deficiency CPEO Complex I Deficiency Complex II Deficiency Complex III Deficiency Complex IV Deficiency Complex V Deficiency CoQ10 Deficiency CPT I Deficiency CPT II Deficiency Creatine Deficiency Syndrome CUD/Primary Carnitine Deficiency Friedreich’s Ataxia GAII/MADD Deficiency Kearns-Sayre Syndrome (KSS) Lactic Acidosis LCHAD Deficiency Leigh Syndrome Leukodystrophy LHON LHON Plus Luft Disease MCAD Deficiency MCKAT Deficiency MELAS MEPAN MERRF MIRAS Mitochondrial Cytophy Mitochondrial DNA Depletion Mitochondrial Encencephalopathy Mitochondrial Myopathy MNGIE M/SCHAD Deficiency MMDS NARP Pearson Syndrome POLG Mutations POLG 2 Primary Mitochondrial Myopathy Pyruvate Carboxylase Deficiency Pyruvate Dehydrogenase Deficiency PDCD SCAD Deficiency Thymidine Kinase 2 Deficiency (TK2) VLCAD Deficiency Undiagnosed Other What is your child's diagnosis? Alpers’ Disease ACAD9 Deficiency Autosomal Dominante Optic Atrophy (ADOA) Barth Syndrome CACT Deficiency CPEO Complex I Deficiency Complex II Deficiency Complex III Deficiency Complex IV Deficiency Complex V Deficiency CoQ10 Deficiency CPT I Deficiency CPT II Deficiency Creatine Deficiency Syndrome CUD/Primary Carnitine Deficiency Friedreich’s Ataxia GAII/MADD Deficiency Kearns-Sayre Syndrome (KSS) Lactic Acidosis LCHAD Deficiency Leigh Syndrome Leukodystrophy LHON LHON Plus Luft Disease MCAD Deficiency MCKAT Deficiency MELAS MEPAN MERRF MIRAS Mitochondrial Cytophy Mitochondrial DNA Depletion Mitochondrial Encencephalopathy Mitochondrial Myopathy MNGIE M/SCHAD Deficiency MMDS NARP Pearson Syndrome POLG Mutations POLG 2 Primary Mitochondrial Myopathy Pyruvate Carboxylase Deficiency Pyruvate Dehydrogenase Deficiency PDCD SCAD Deficiency Thymidine Kinase 2 Deficiency (TK2) VLCAD Deficiency Undiagnosed Other What is your loved one's diagnosis? Alpers’ Disease ACAD9 Deficiency Autosomal Dominante Optic Atrophy (ADOA) Barth Syndrome CACT Deficiency CPEO Complex I Deficiency Complex II Deficiency Complex III Deficiency Complex IV Deficiency Complex V Deficiency CoQ10 Deficiency CPT I Deficiency CPT II Deficiency Creatine Deficiency Syndrome CUD/Primary Carnitine Deficiency Friedreich’s Ataxia GAII/MADD Deficiency Kearns-Sayre Syndrome (KSS) Lactic Acidosis LCHAD Deficiency Leigh Syndrome Leukodystrophy LHON LHON Plus Luft Disease MCAD Deficiency MCKAT Deficiency MELAS MEPAN MERRF MIRAS Mitochondrial Cytophy Mitochondrial DNA Depletion Mitochondrial Encencephalopathy Mitochondrial Myopathy MNGIE M/SCHAD Deficiency MMDS NARP Pearson Syndrome POLG Mutations POLG 2 Primary Mitochondrial Myopathy Pyruvate Carboxylase Deficiency Pyruvate Dehydrogenase Deficiency PDCD SCAD Deficiency Thymidine Kinase 2 Deficiency (TK2) VLCAD Deficiency Undiagnosed Other Newsletter Type\*Mito NewslettersFAOD NewslettersBoth Mito & FAOD Newsletters CAPTCHA Subscribe --- ### [Contact Us](https://www.mitoaction.org/about-us/contact-us/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Stay connected and contact MitoAction for the most current information relevant to the mitochondrial disease community. "\*" indicates required fields Name This field is for validation purposes and should be left unchanged. Name\* First Last Email\* Phone EthnicityCaucasianAfrican AmericanLatino or HispanicAsianSoutheast AsianNative AmericanNative Hawaiian or Pacific IslanderTwo or MoreOther/UnknownPrefer not to state Pronounshe/him/hisshe/her/hersthey/them/theirve/ver/visxe/xem/xyrze/zie Genderman/boywoman/girltransgendernon-binaryagendergender non-conforminggender fluidgenderqueertwo spiritothernone of theseprefer not to state Primary LanguageArabicEnglishSpanishBengaliBhojpuriChinese- MandarinChinese – Wu or ShanghaineseChinese – Yue or CantoneseFrenchGermanGujaratiHausaHindiIgboItalianJapaneseKoreanMarathiPersian IranianPortuguesePunjabiRussianTagalogTamilTeluguTurkishUkrainianUrduVietnameseOther What is your connection to mito?\* Patient Parent Spouse Caregiver Son Daughter Sibling Grandparent Grandchild Aunt Uncle Cousin Niece Nephew Friend Teacher/Educator Medical Professional Physician Nurse Genetic Counselor Social Worker Researcher Industry Rep Other Diagnosis TypeGenetically ConfirmedClinical DiagnosisUndiagnosed What is your diagnosis?\* Alpers’ Disease ACAD9 Deficiency Autosomal Dominante Optic Atrophy (ADOA) Barth Syndrome CACT Deficiency CPEO Complex I Deficiency Complex II Deficiency Complex III Deficiency Complex IV Deficiency Complex V Deficiency CoQ10 Deficiency CPT I Deficiency CPT II Deficiency Creatine Deficiency Syndrome CUD/Primary Carnitine Deficiency Friedreich’s Ataxia GAII/MADD Deficiency Kearns-Sayre Syndrome (KSS) Lactic Acidosis LCHAD Deficiency Leigh Syndrome Leukodystrophy LHON LHON Plus Luft Disease MCAD Deficiency MCKAT Deficiency MELAS MEPAN MERRF MIRAS Mitochondrial Cytophy Mitochondrial DNA Depletion Mitochondrial Encencephalopathy Mitochondrial Myopathy MNGIE M/SCHAD Deficiency MMDS NARP Pearson Syndrome POLG Mutations POLG 2 Primary Mitochondrial Myopathy Pyruvate Carboxylase Deficiency Pyruvate Dehydrogenase Deficiency PDCD SCAD Deficiency Thymidine Kinase 2 Deficiency (TK2) VLCAD Deficiency Undiagnosed Other What is your child's diagnosis?\* Alpers’ Disease ACAD9 Deficiency Autosomal Dominante Optic Atrophy (ADOA) Barth Syndrome CACT Deficiency CPEO Complex I Deficiency Complex II Deficiency Complex III Deficiency Complex IV Deficiency Complex V Deficiency CoQ10 Deficiency CPT I Deficiency CPT II Deficiency Creatine Deficiency Syndrome CUD/Primary Carnitine Deficiency Friedreich’s Ataxia GAII/MADD Deficiency Kearns-Sayre Syndrome (KSS) Lactic Acidosis LCHAD Deficiency Leigh Syndrome Leukodystrophy LHON LHON Plus Luft Disease MCAD Deficiency MCKAT Deficiency MELAS MEPAN MERRF MIRAS Mitochondrial Cytophy Mitochondrial DNA Depletion Mitochondrial Encencephalopathy Mitochondrial Myopathy MNGIE M/SCHAD Deficiency Multiple Mitochondrial Dysfunction Syndrome NARP Pearson Syndrome POLG Mutations POLG 2 Primary Mitochondrial Myopathy Pyruvate Carboxylase Deficiency Pyruvate Dehydrogenase Deficiency Pyruvate Dhydrogenase Complex Deficiency (PDCD) SCAD Deficiency Thymidine Kinase 2 Deficiency (TK2) VLCAD Deficiency Undiagnosed Other What is your loved one's diagnosis?\* Alpers’ Disease ACAD9 Deficiency Autosomal Dominante Optic Atrophy (ADOA) Barth Syndrome CACT Deficiency CPEO Complex I Deficiency Complex II Deficiency Complex III Deficiency Complex IV Deficiency Complex V Deficiency CoQ10 Deficiency CPT I Deficiency CPT II Deficiency Creatine Deficiency Syndrome CUD/Primary Carnitine Deficiency Friedreich’s Ataxia GAII/MADD Deficiency Kearns-Sayre Syndrome (KSS) Lactic Acidosis LCHAD Deficiency Leigh Syndrome Leukodystrophy LHON LHON Plus Luft Disease MCAD Deficiency MCKAT Deficiency MELAS MEPAN MERRF MIRAS Mitochondrial Cytophy Mitochondrial DNA Depletion Mitochondrial Encencephalopathy Mitochondrial Myopathy MNGIE M/SCHAD Deficiency Multiple Mitochondrial Dysfunction Syndrome NARP Pearson Syndrome POLG Mutations POLG 2 Primary Mitochondrial Myopathy Pyruvate Carboxylase Deficiency Pyruvate Dehydrogenase Deficiency Pyruvate Dhydrogenase Complex Deficiency (PDCD) SCAD Deficiency Thymidine Kinase 2 Deficiency (TK2) VLCAD Deficiency Undiagnosed Other Question for MitoAction\* Would you like to sign up for our mailing list?Mito NewslettersFAOD NewslettersBoth Mito & FAOD Newsletters CAPTCHA Submit --- ### [Connect on Social](https://www.mitoaction.org/about-us/connect-with-us/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Connect with MitoAction through one of our various social media platforms including [Facebook](https://www.facebook.com/mitoaction/), [Instagram](https://www.instagram.com/mitoaction/), [LinkedIn](https://www.linkedin.com/company/mitoaction/) and [Twitter.](https://twitter.com/MitoAction) Our online communities are a wonderful way to stay up to date on the programs and services offered by MitoAction and also for you to connect with other members of the mito community. Also feel free to reach out to our support team at for one-on-one support. You can also reach us by phone at 888-648-6228. A member of our team is available to discuss your individual needs. [ ![](https://www.mitoaction.org/wp-content/uploads/sb-instagram-feed-images/mitoaction.webp) ### mitoaction 3,717 🌟 15+ years serving ⛑ 1000+ Support Calls ⚕️ Our mission is to help & support people with mitochondrial disease. \#mymito #mitoaction #mito ](https://www.instagram.com/mitoaction/ "@mitoaction") Load More [ Follow on Instagram ](https://www.instagram.com/mitoaction/) --- ### [Education](https://www.mitoaction.org/education/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # Education Learn more about the current state of diagnosis, symptoms, treatment, clinical trials and day-to-day living with mitochondrial disease. ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Program-Logo-Monthly-Expert-Series-1024x269.webp)#### Monthly Expert Series Educational webinars that feature guest speakers addressing topics important to the mito community, giving patients and families unprecedented access to leading clinical experts. [Learn More](https://www.mitoaction.org/education/monthly-expert-series/) ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Program-Logo-Wondering-Wednesdays-1024x269.png)#### Wondering Wednesdays Genetics can seem complicated. We help make it easy to understand in these informal, non-recorded sessions with genetic counselor and Mito Advocate Devin Shuman. [Learn More](https://www.mitoaction.org/education/monthly-expert-series/wondering-wednesdays/) ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Program-Logo-Energy-in-Action-Podcast-1024x269.webp)#### Energy in Action Podcast Get a glimpse into the lives of families affected by mitochondrial disease and get the latest information on clinical trials, diagnosis, disease research, and the advancement of therapies. [Learn More](https://www.mitoaction.org/education/energy-in-action/) ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Energy-4-Education-Teens-in-a-High-School-Classroom-1200x600.webp)#### Energy 4 Education Improve your child’s chances of success in school by collaborating with others and learning how to best support your child or teen with mitochondrial disease. [Learn More](https://www.mitoaction.org/education/energy-4-education/) ![Group Meeting at 2022 International Metabolic Conference](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-International-Metobolic-Conference-Group-Meeting-1200x600.jpg)#### Patient Education Forums Patient Education Forums are live events designed to connect patients with one another and clinicians who can answer questions about mito. [Learn More](https://www.mitoaction.org/education/pefs/) ![Presentation at 2022 International Metabolic Conference](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-International-Metabolic-Conference-08-1200x600.jpg)#### International Metabolic Conference Learn about disease management, current clinical trials, and nutrition from a variety of speakers including medical professionals, dietitians, social workers, advocates and genetic counselors. [Learn More](https://www.mitoaction.org/events/internationalmetabolicconference/) --- ### [I Think I Have Mito. Now What?](https://www.mitoaction.org/mitochondrial-disease/i-think-i-have-mito-now-what/) **Published:** December 13, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # I Think I Have Mito. Now What? ##### Start your journey here, with links to our education resources about mitochondrial disease, diagnosis information, a directory of doctors who specialize in mitochondrial diseases and research, current clinical trial information, support, and more. ![](https://www.mitoaction.org/wp-content/uploads/2022/12/Doctor-meeting-with-young-girl-and-mother-1024x682.jpg)## [Get a Diagnosis](https://www.mitoaction.org/mitochondrial-disease/diagnosis/diagnosing-mito/ "Diagnosing Mitochondrial Disease") Diagnosing mitochondrial disease is difficult, and a diagnosis may still take years and involve many specialists. Learn more about [diagnosing mito](https://www.mitoaction.org/mitochondrial-disease/diagnosis/diagnosing-mito/ "Diagnosing Mitochondrial Disease"), [find a doctor who specializes in mito](https://www.mitoaction.org/mitochondrial-disease/doctors/ "Mitochondrial Disease Doctors"), and get our [New Patient Kit](https://www.mitoaction.org/education/new-patient-kit/ "New Patient Kit"). [Learn More](https://www.mitoaction.org/mitochondrial-disease/diagnosis/diagnosing-mito/) ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Mito411-Woman-on-the-phone-in-her-living-room-1024x683.webp)## [Find Patient & Family Support](https://www.mitoaction.org/programs-support/patient-and-family-support/ "Patient & Family Support") It’s a difficult time, but you don’t have to go through it alone. We offer support — from [one-on-one calls](https://www.mitoaction.org/programs-support/patient-and-family-support/mito411/ "Mito411") to [group support calls](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/ "Support Calls") to [socials](https://www.mitoaction.org/programs-support/patient-and-family-support/mito-socials/ "MitoSocials") and [playdates](https://www.mitoaction.org/programs-support/patient-and-family-support/mito-playdate/ "MitoPlaydates") — to people with mito and their families. [Learn More](https://www.mitoaction.org/programs-support/patient-and-family-support/) ![Conversation at 2022 International Metabolic Conference](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-International-Metabolic-Conference-07-1024x683.jpg)## [Learn More About Mito](https://www.mitoaction.org/education/ "Education") Looking to learn more about mitochondrial disease? Our [Monthly Expert Series](https://www.mitoaction.org/education/monthly-expert-series/) and our [Energy in Action Podcasts](https://www.mitoaction.org/education/energy-in-action/) are good places to start learning about a range of topics related to mitochondrial diseases, including current information on diagnosis, symptoms, treatment, clinical trials and day-to-day living with mitochondrial disease. [Learn More](https://www.mitoaction.org/education/) ![](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-MitoAction-Energy-Walk-Boston-02-Blurred-1024x683.jpg)## [Get Involved with the Community](https://www.mitoaction.org/join-the-cause/ "Join the Cause") There are plenty of opportunities to get involved with mito. [Make a donation](https://www.mitoaction.org/join-the-cause/giving/donate/), [start volunteering](https://www.mitoaction.org/join-the-cause/volunteer/), [become a MitoChampion](https://www.mitoaction.org/join-the-cause/volunteer/mito-champions/) or start [advocating in local and national policy issues](https://www.mitoaction.org/join-the-cause/raise-your-voice/). [Learn More](https://www.mitoaction.org/join-the-cause/) --- ### [Programs & Support](https://www.mitoaction.org/programs-support/) **Published:** November 29, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # Programs & Support ##### Your gateway to comprehensive resources and assistance for patients and family members struggling with mito and FAOD. MitoAction offers a wide range of support, education and planning resources to empower individuals and families affected by mitochondrial diseases. Explore our offerings and discover the support you need to MitoAction’s programs and support initiatives are designed to help patients and their families at any stage of their journey with mito. Our goals is to connect people with shared experiences and to lessen the isolation associated with living with a rare disease, so they can navigate the challenges of mitochondrial disease with confidence and resilience. ![Group Meeting at 2022 International Metabolic Conference](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-International-Metobolic-Conference-Group-Meeting-1024x683.jpg)## [Patient & Family Support](https://www.mitoaction.org/programs-support/patient-and-family-support/ "Patient & Family Support") MitoAction offer patient and family support — from one-on-one calls to group meetings and socials — to people with mitochondrial diseases and their families. Our goal is to create personal connections that can help during the long and often difficult journey associated with mito. [Learn More](https://www.mitoaction.org/programs-support/patient-and-family-support/) ![](https://www.mitoaction.org/wp-content/uploads/2023/03/MitoSantas-provides-Christmas-gifts-to-kids-dealing-with-mitochondrial-disease-cropped.jpg)## [Programs](https://www.mitoaction.org/programs-support/mitoaction-programs/ "MitoAction Programs") Our programs provide positive impacts to the lives of people living with mitochondrial diseases and their families. Many of MitoAction’s programs have been dedicated to the loved ones of families affected by mito and their legacies honored through their continued impact on others. [Learn More](https://www.mitoaction.org/programs-support/mitoaction-programs/) ![Presentation at 2022 International Metabolic Conference](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-International-Metabolic-Conference-08-1024x683.jpg)## [Mitochondrial Disease Education](https://www.mitoaction.org/education/ "Education") MitoAction has a number of education initiatives designed to help educate the mitochondrial disease community on the current state of diagnosis, symptoms, treatment, clinical trials and day-to-day living with mitochondrial disease. We believe that learning everything you can about mitochondrial disease will help patients and their families better navigate their journey with mito. [Learn More](https://www.mitoaction.org/education/) ![](https://www.mitoaction.org/wp-content/uploads/2023/01/Vehicle-Modification-Van-with-Chair-Lift-1024x683.jpg)## [Planning & Preparation](https://www.mitoaction.org/planning-and-preparation/ "Planning & Preparation") When you have a rare disease, planning ahead and being prepared are critical. MitoAction’s Planning and Preparation resources help patients and their families prepare for immediate patient needs and common long-term issues. [Learn More](https://www.mitoaction.org/planning-and-preparation/) --- ### [Mito411](https://www.mitoaction.org/programs-support/patient-and-family-support/mito411/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Patient & Family Support](https://www.mitoaction.org/programs-support/patient-and-family-support/ "Education") # Mito411 Mito411 offers live, one to one support, education, advocacy, and a direct connection with someone who understands. ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Mito411-Woman-on-the-phone-in-her-living-room-1024x683.webp) Need Support? You are not alone. Mito411 offers live, one to one support, education, advocacy, and a direct connection with someone who understands. Mito411 volunteers speak with callers needing support and share similar experiences on how to live day to day with mito. The personal connection can really help during the long and often difficult journey associated with mito. This free program is funded by MitoAction and is not intended to provide medical advice. Call us now at [1-888-MITO-411 (648-6411)](tel:+18886486411) to connect with a volunteer who can relate to the journey of diagnosis and the challenges of living with mitochondrial disease. Volunteers are adults with mito, parents of children with mitochondrial disorders, and caregivers. Although volunteers can speak from personal experience and have access to many resources and educational material, medical advice cannot be offered. Call Mito411 at [1-888-MITO-411](tel:+18886486411) and know that you are never alone on your journey with mitochondrial disease. You can also email our volunteers at [mito411@mitoaction.org](mailto:mito411@mitoaction.com) ![](https://www.mitoaction.org/wp-content/uploads/2023/01/Mito411-Logo-Recolored-916x1024.png) ### **Want to Support Others? Volunteer for Mito411.** For more information on becoming a Mito411 volunteer, email us today at . [Become a Mito411 Volunteer](mailto:mito411@mitoaction.org) --- ### [Positive Peach Packages](https://www.mitoaction.org/programs-support/patient-and-family-support/positive-peach-packages/) **Published:** November 22, 2019 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Patient & Family Support](https://www.mitoaction.org/programs-support/patient-and-family-support/ "Education") # Positive Peach Packages Positive Peach Packages are care packages you can send to those affected by mito. These packages reminded them that there is a positive person who cares about how they are feeling. ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-Positive-Peach-Packages-A-young-woman-holding-a-simple-box-with-a-twine-bow-1024x683.webp) ![](https://www.mitoaction.org/wp-content/uploads/2019/11/IMG_1102-e1574459986908-769x1024.jpeg) MitoAction is thrilled to sponsor Mito Warrior Jenevieve Woods, aka Peach, as she brings the mito community **Positive Peach Packages**! Jenevieve’s mission is to positively impact others and be a positive light in the lives of those affected by mitochondrial disease. Through Positive Peach Packages, Jenevieve wants to be a positive touchstone for her community. She is a conduit for healthcare providers or family and friends to send a sign of their love to a person who has mitochondrial disease and in need of a lift in a low moment. She also accepts requests from mitopatients themselves who know they need to receive a care package. It is her wish that the recipients of these care packages are reminded that there is a positive person that cares about how they are feeling, both physically and mentally. She takes into account the giver’s personal suggestions to customize the Peach Package. She wants everyone in the mito community to know they are not alone! > “I hope that the items in these care packages positively inspire you and that you use that inspiration to positively impact each person you meet. Have a positive life powered by Peach. Spreading this positivity to the people in the mito community means everything to me. Creating a positive impression on just one person can change a life and make a lasting impact.” > > Jenevieve Woods, aka Peach ### **Positive Peach’s Mantra:** Positivity. Impact. Inspire. Leaving positive imprints on every person — from the cashier at the grocery store, to her best friends is how Jenevieve lives her life. Being a positive person is the difference between having strength to get up in the morning and staying in bed wallowing in toxic feelings. Using the power of positivity as a tool to persevere through the hard times makes fighting a rare disease that much easier. Positively impacting others can inspire them in mesmerizing ways. Inspirational chains of events can invoke other positive actions. A powerful enterprise can start with one person and a single idea that can impact so many individuals. If you know someone who could benefit from a Positive Peach Package, please let us know using the form on this page! ##### Send a Positive Peach Package "\*" indicates required fields Instagram This field is for validation purposes and should be left unchanged. Your Name\* First Last Your Email Address\* EthnicityCaucasianAfrican AmericanLatino or HispanicAsianSoutheast AsianNative AmericanNative Hawaiian or Pacific IslanderTwo or MoreOther/UnknownPrefer not to state Primary LanguageArabicEnglishSpanishBengaliBhojpuriChinese- MandarinChinese – Wu or ShanghaineseChinese – Yue or CantoneseFrenchGermanGujaratiHausaHindiHindiIgboItalianJapaneseKoreanMarathiPersian IranianPortuguesePunjabiRussianTagalogTamilTeluguTurkishUkrainianUrduVietnameseOther Genderman/boywoman/girltransgendernon-binaryagendergender non-conforminggender fluidgenderqueertwo spiritothernone of theseprefer not to state Pronounhe/him/hisshe/her/hersthey/them/theirve/ver/visxe/xem/xyrze/zie Patient/Family Name\* First Last Patient/Family Address\* Street Address Address Line 2 City State / Province / Region ZIP / Postal Code AfghanistanÅland IslandsAlbaniaAlgeriaAmerican SamoaAndorraAngolaAnguillaAntarcticaAntigua and BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBoliviaBonaire, Sint Eustatius and SabaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBritish Indian Ocean TerritoryBrunei DarussalamBulgariaBurkina FasoBurundiCabo VerdeCambodiaCameroonCanadaCayman IslandsCentral African RepublicChadChileChinaChristmas IslandCocos IslandsColombiaComorosCongoCongo, Democratic Republic of theCook IslandsCosta RicaCôte d'IvoireCroatiaCubaCuraçaoCyprusCzechiaDenmarkDjiboutiDominicaDominican RepublicEcuadorEgyptEl SalvadorEquatorial GuineaEritreaEstoniaEswatiniEthiopiaFalkland IslandsFaroe IslandsFijiFinlandFranceFrench GuianaFrench PolynesiaFrench Southern TerritoriesGabonGambiaGeorgiaGermanyGhanaGibraltarGreeceGreenlandGrenadaGuadeloupeGuamGuatemalaGuernseyGuineaGuinea-BissauGuyanaHaitiHeard Island and McDonald IslandsHoly SeeHondurasHong KongHungaryIcelandIndiaIndonesiaIranIraqIrelandIsle of ManIsraelItalyJamaicaJapanJerseyJordanKazakhstanKenyaKiribatiKorea, Democratic People's Republic ofKorea, Republic ofKuwaitKyrgyzstanLao People's Democratic RepublicLatviaLebanonLesothoLiberiaLibyaLiechtensteinLithuaniaLuxembourgMacaoMadagascarMalawiMalaysiaMaldivesMaliMaltaMarshall IslandsMartiniqueMauritaniaMauritiusMayotteMexicoMicronesiaMoldovaMonacoMongoliaMontenegroMontserratMoroccoMozambiqueMyanmarNamibiaNauruNepalNetherlandsNew CaledoniaNew ZealandNicaraguaNigerNigeriaNiueNorfolk IslandNorth MacedoniaNorthern Mariana IslandsNorwayOmanPakistanPalauPalestine, State ofPanamaPapua New GuineaParaguayPeruPhilippinesPitcairnPolandPortugalPuerto RicoQatarRéunionRomaniaRussian FederationRwandaSaint BarthélemySaint Helena, Ascension and Tristan da CunhaSaint Kitts and NevisSaint LuciaSaint MartinSaint Pierre and MiquelonSaint Vincent and the GrenadinesSamoaSan MarinoSao Tome and PrincipeSaudi ArabiaSenegalSerbiaSeychellesSierra LeoneSingaporeSint MaartenSlovakiaSloveniaSolomon IslandsSomaliaSouth AfricaSouth Georgia and the South Sandwich IslandsSouth SudanSpainSri LankaSudanSurinameSvalbard and Jan MayenSwedenSwitzerlandSyria Arab RepublicTaiwanTajikistanTanzania, the United Republic ofThailandTimor-LesteTogoTokelauTongaTrinidad and TobagoTunisiaTürkiyeTurkmenistanTurks and Caicos IslandsTuvaluUgandaUkraineUnited Arab EmiratesUnited KingdomUnited StatesUruguayUS Minor Outlying IslandsUzbekistanVanuatuVenezuelaViet NamVirgin Islands, BritishVirgin Islands, U.S.Wallis and FutunaWestern SaharaYemenZambiaZimbabwe Country Tell us how we can we support this mito family or mito patient with a Positive Peach Package?\* Diagnosis TypeGenetically ConfirmedClinical DiagnosisUndiagnosed What is the nominee's connection to mito?\* Patient Parent Spouse Caregiver Son Daughter Sibling Grandparent Grandchild Aunt Uncle Cousin Niece Nephew Friend Teacher/Educator Medical Professional Physician Nurse Genetic Counselor Social Worker Researcher Industry Rep Other Would you like to sign up for our mailing list?\*Mito NewslettersFAOD NewslettersBoth Mito & FAOD Newsletters CAPTCHA Submit --- ### [Host a MitoSocial](https://www.mitoaction.org/programs-support/patient-and-family-support/mito-socials/host-a-mitosocial/) **Published:** September 30, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Are you interested in hosting a MitoSocial? To get started, submit the form below: "\*" indicates required fields NameThis field is for validation purposes and should be left unchanged. Name\* First Last Address\* Street Address Address Line 2 City State / Province / Region ZIP / Postal Code AfghanistanÅland IslandsAlbaniaAlgeriaAmerican SamoaAndorraAngolaAnguillaAntarcticaAntigua and BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBoliviaBonaire, Sint Eustatius and SabaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBritish Indian Ocean TerritoryBrunei DarussalamBulgariaBurkina FasoBurundiCabo VerdeCambodiaCameroonCanadaCayman IslandsCentral African RepublicChadChileChinaChristmas IslandCocos IslandsColombiaComorosCongoCongo, Democratic Republic of theCook IslandsCosta RicaCôte d'IvoireCroatiaCubaCuraçaoCyprusCzechiaDenmarkDjiboutiDominicaDominican RepublicEcuadorEgyptEl SalvadorEquatorial GuineaEritreaEstoniaEswatiniEthiopiaFalkland IslandsFaroe IslandsFijiFinlandFranceFrench GuianaFrench PolynesiaFrench Southern TerritoriesGabonGambiaGeorgiaGermanyGhanaGibraltarGreeceGreenlandGrenadaGuadeloupeGuamGuatemalaGuernseyGuineaGuinea-BissauGuyanaHaitiHeard Island and McDonald IslandsHoly SeeHondurasHong KongHungaryIcelandIndiaIndonesiaIranIraqIrelandIsle of ManIsraelItalyJamaicaJapanJerseyJordanKazakhstanKenyaKiribatiKorea, Democratic People's Republic ofKorea, Republic ofKuwaitKyrgyzstanLao People's Democratic RepublicLatviaLebanonLesothoLiberiaLibyaLiechtensteinLithuaniaLuxembourgMacaoMadagascarMalawiMalaysiaMaldivesMaliMaltaMarshall IslandsMartiniqueMauritaniaMauritiusMayotteMexicoMicronesiaMoldovaMonacoMongoliaMontenegroMontserratMoroccoMozambiqueMyanmarNamibiaNauruNepalNetherlandsNew CaledoniaNew ZealandNicaraguaNigerNigeriaNiueNorfolk IslandNorth MacedoniaNorthern Mariana IslandsNorwayOmanPakistanPalauPalestine, State ofPanamaPapua New GuineaParaguayPeruPhilippinesPitcairnPolandPortugalPuerto RicoQatarRéunionRomaniaRussian FederationRwandaSaint BarthélemySaint Helena, Ascension and Tristan da CunhaSaint Kitts and NevisSaint LuciaSaint MartinSaint Pierre and MiquelonSaint Vincent and the GrenadinesSamoaSan MarinoSao Tome and PrincipeSaudi ArabiaSenegalSerbiaSeychellesSierra LeoneSingaporeSint MaartenSlovakiaSloveniaSolomon IslandsSomaliaSouth AfricaSouth Georgia and the South Sandwich IslandsSouth SudanSpainSri LankaSudanSurinameSvalbard and Jan MayenSwedenSwitzerlandSyria Arab RepublicTaiwanTajikistanTanzania, the United Republic ofThailandTimor-LesteTogoTokelauTongaTrinidad and TobagoTunisiaTürkiyeTurkmenistanTurks and Caicos IslandsTuvaluUgandaUkraineUnited Arab EmiratesUnited KingdomUnited StatesUruguayUS Minor Outlying IslandsUzbekistanVanuatuVenezuelaViet NamVirgin Islands, BritishVirgin Islands, U.S.Wallis and FutunaWestern SaharaYemenZambiaZimbabwe Country Email\* Phone What is your connection to mito?\* Patient Parent Spouse Caregiver Son Daughter Sibling Grandparent Grandchild Aunt Uncle Cousin Niece Nephew Friend Teacher/Educator Medical Professional Physician Nurse Genetic Counselor Social Worker Researcher Industry Rep Other Diagnosis TypeGenetically ConfirmedClinical DiagnosisUndiagnosed Please tell us why you are interested in hosting your own Mito Social?\* When would you like to plan this event for your community?\* Would you like to sign up for our mailing list?\*Mito NewslettersFAOD NewslettersBoth Mito & FAOD Newsletters CAPTCHA Submit --- ### [Host a MitoPlaydate](https://www.mitoaction.org/programs-support/patient-and-family-support/mito-playdate/host-a-mitoplaydate/) **Published:** September 30, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") MitoPlaydates are led by local volunteers just like you! If you’re interested in hosting a MitoPlaydate in your area, start by submitting the form below. "\*" indicates required fields URL This field is for validation purposes and should be left unchanged. Name\* First Last Address\* Street Address Address Line 2 City State / Province / Region ZIP / Postal Code AfghanistanÅland IslandsAlbaniaAlgeriaAmerican SamoaAndorraAngolaAnguillaAntarcticaAntigua and BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBoliviaBonaire, Sint Eustatius and SabaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBritish Indian Ocean TerritoryBrunei DarussalamBulgariaBurkina FasoBurundiCabo VerdeCambodiaCameroonCanadaCayman IslandsCentral African RepublicChadChileChinaChristmas IslandCocos IslandsColombiaComorosCongoCongo, Democratic Republic of theCook IslandsCosta RicaCôte d'IvoireCroatiaCubaCuraçaoCyprusCzechiaDenmarkDjiboutiDominicaDominican RepublicEcuadorEgyptEl SalvadorEquatorial GuineaEritreaEstoniaEswatiniEthiopiaFalkland IslandsFaroe IslandsFijiFinlandFranceFrench GuianaFrench PolynesiaFrench Southern TerritoriesGabonGambiaGeorgiaGermanyGhanaGibraltarGreeceGreenlandGrenadaGuadeloupeGuamGuatemalaGuernseyGuineaGuinea-BissauGuyanaHaitiHeard Island and McDonald IslandsHoly SeeHondurasHong KongHungaryIcelandIndiaIndonesiaIranIraqIrelandIsle of ManIsraelItalyJamaicaJapanJerseyJordanKazakhstanKenyaKiribatiKorea, Democratic People's Republic ofKorea, Republic ofKuwaitKyrgyzstanLao People's Democratic RepublicLatviaLebanonLesothoLiberiaLibyaLiechtensteinLithuaniaLuxembourgMacaoMadagascarMalawiMalaysiaMaldivesMaliMaltaMarshall IslandsMartiniqueMauritaniaMauritiusMayotteMexicoMicronesiaMoldovaMonacoMongoliaMontenegroMontserratMoroccoMozambiqueMyanmarNamibiaNauruNepalNetherlandsNew CaledoniaNew ZealandNicaraguaNigerNigeriaNiueNorfolk IslandNorth MacedoniaNorthern Mariana IslandsNorwayOmanPakistanPalauPalestine, State ofPanamaPapua New GuineaParaguayPeruPhilippinesPitcairnPolandPortugalPuerto RicoQatarRéunionRomaniaRussian FederationRwandaSaint BarthélemySaint Helena, Ascension and Tristan da CunhaSaint Kitts and NevisSaint LuciaSaint MartinSaint Pierre and MiquelonSaint Vincent and the GrenadinesSamoaSan MarinoSao Tome and PrincipeSaudi ArabiaSenegalSerbiaSeychellesSierra LeoneSingaporeSint MaartenSlovakiaSloveniaSolomon IslandsSomaliaSouth AfricaSouth Georgia and the South Sandwich IslandsSouth SudanSpainSri LankaSudanSurinameSvalbard and Jan MayenSwedenSwitzerlandSyria Arab RepublicTaiwanTajikistanTanzania, the United Republic ofThailandTimor-LesteTogoTokelauTongaTrinidad and TobagoTunisiaTürkiyeTurkmenistanTurks and Caicos IslandsTuvaluUgandaUkraineUnited Arab EmiratesUnited KingdomUnited StatesUruguayUS Minor Outlying IslandsUzbekistanVanuatuVenezuelaViet NamVirgin Islands, BritishVirgin Islands, U.S.Wallis and FutunaWestern SaharaYemenZambiaZimbabwe Country Email\* Phone\* What is your connection to mito?\* Patient Parent Spouse Caregiver Son Daughter Sibling Grandparent Grandchild Aunt Uncle Cousin Niece Nephew Friend Teacher/Educator Medical Professional Physician Nurse Genetic Counselor Social Worker Researcher Industry Rep Other What are your goals for planning this event? We want to ensure your success!\* When would you like to host this event?\* Would you like to sign up for our mailing list?\*Mito NewslettersFAOD NewslettersBoth Mito & FAOD Newsletters CAPTCHA Submit --- ### [MitoPlaydates](https://www.mitoaction.org/programs-support/patient-and-family-support/mito-playdate/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Patient & Family Support](https://www.mitoaction.org/programs-support/patient-and-family-support/ "Education") # MitoPlaydates MitoPlaydates offer a wonderful opportunity for local children and families to connect in person, share experiences and to give and receive support. ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-MitoSocials-Little-boy-playing-on-playground-equipment-1024x683.webp) MitoPlaydates offer a wonderful opportunity for local children and families to connect in person, share experiences and to give and receive support. Whether at a local park, library or school, these informal gatherings allow the children and their families to develop meaningful relationships with others in their area, further extending the community of support. MitoPlaydates are led by local volunteers with the support of the MitoAction staff. ### **Find or Host a MitoPlaydate!** Check out our Events Calendar to find and register for an upcoming Playdate. Can’t find one in your area? Become a MitoPlaydate host! [Find an Upcoming MitoPlaydate](https://www.mitoaction.org/calendar/category/mitoplaydate/) [Host a MitoPlaydate in Your Area](https://www.mitoaction.org/programs-support/patient-and-family-support/mito-playdate/host-a-mitoplaydate/) --- ### [MitoSocials](https://www.mitoaction.org/programs-support/patient-and-family-support/mito-socials/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Patient & Family Support](https://www.mitoaction.org/programs-support/patient-and-family-support/ "Education") # MitoSocials Connect with other mito families in your local community to meet, share stories, and give and get support from others with similar experiences. ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-MitoSocials-Young-girl-and-her-mother-do-an-arts-and-crafts-project-1024x683.webp) Our virtual and in-person MitoSocials help connect families with other mito families in their local communities. These low-key, relaxed gatherings allow mito families to meet each other, share stories, give and get support, and realize they’re not alone on this journey. We want to help you get support closer to home, and are hopeful that a MitoSocial will offer just that. Are you interested in hosting a MitoSocial? It’s easy! ![](https://www.mitoaction.org/wp-content/uploads/2023/01/MitoSocial-Logo-Recolored-1024x463.png) #### Here’s what you — the host — will do: - Secure space for the Social, such as a hospital, church basement, community center, or school and choose a date. - Buy snacks and beverages for the event using a stipend from MitoAction. - Take care of the day-of setup and cleanup. - Send MitoAction photos of your Social, your sign-in sheet, and your receipts. #### Here’s what MitoAction will do: - Send email invitations to mito patients and families in your area. - Manage the RSVPs. - Provide a stipend for snacks and beverages. - Provide sign-in sheets, name tags, and mito materials to have available at your event. - Post photos and a write-up of your Social on our Facebook page. ### **Find or Host a MitoSocial** Check out our Events Calendar to find and register for upcoming MitoSocials. Can’t find one in your area? Become a MitoSocial host! [Find an Upcoming MitoSocial](https://www.mitoaction.org/calendar/category/mitosocials/) [Host a MitoSocial in Your Area](https://www.mitoaction.org/programs-support/patient-and-family-support/mito-socials/host-a-mitosocial/) --- ### [Patient Education Forums](https://www.mitoaction.org/education/pefs/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [EDUCATION](https://www.mitoaction.org/education/ "Education") # Patient Education Forums Learn about mito, hear the most updated information directly from clinicians, and connect with other families. ![Group Meeting at 2022 International Metabolic Conference](https://www.mitoaction.org/wp-content/uploads/2023/01/2022-International-Metobolic-Conference-Group-Meeting-1024x683.jpg) MitoAction’s Patient Education Forums provide exceptional opportunities for people with mitochondrial disease to receive accurate information about mito, learn about treatment options, clinical trials and research, access experts in the field, and connect with others who are facing similar challenges living with the disease. These live events allow patients, caregivers and family members to interact with one another and clinicians who can answer questions which will support them on their day-to-day journey with mito. Being diagnosed with mitochondrial disease can be a lonely journey. The education forums will connect our patients and those affected by this rare disease to a community filled with the support they so desperately need. ### **Register & Attend a Patient Education Forum** Check out our Events Calendar to find, register and attend an upcoming Patient Education Forum (PEF). [View Upcoming Patient Education Forums](https://www.mitoaction.org/calendar/category/pefs/) --- ### [New Patient Kit for Mito](https://www.mitoaction.org/education/new-patient-kit/new-patient-kit-for-mito/) **Published:** April 3, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") View our New Patient Kit online, [download it as a PDF](https://www.mitoaction.org/wp-content/uploads/2021/01/Mito-New-Patient-Kit-Updated-3_10_23.pdf "Mito New Patient Kit – Updated 3_10_23"), or request a paper copy of the using the form below. [Mito-New-Patient-Kit-Updated-3\_10\_23](https://www.mitoaction.org/wp-content/uploads/2021/01/Mito-New-Patient-Kit-Updated-3_10_23.pdf) ## Request a New Patient Kit (Mito) "\*" indicates required fields Comments This field is for validation purposes and should be left unchanged. Name\* First Last Address\* Street Address Address Line 2 City State / Province / Region ZIP / Postal Code AfghanistanÅland IslandsAlbaniaAlgeriaAmerican SamoaAndorraAngolaAnguillaAntarcticaAntigua and BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBoliviaBonaire, Sint Eustatius and SabaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBritish Indian Ocean TerritoryBrunei DarussalamBulgariaBurkina FasoBurundiCabo VerdeCambodiaCameroonCanadaCayman IslandsCentral African RepublicChadChileChinaChristmas IslandCocos IslandsColombiaComorosCongoCongo, Democratic Republic of theCook IslandsCosta RicaCôte d'IvoireCroatiaCubaCuraçaoCyprusCzechiaDenmarkDjiboutiDominicaDominican RepublicEcuadorEgyptEl SalvadorEquatorial GuineaEritreaEstoniaEswatiniEthiopiaFalkland IslandsFaroe IslandsFijiFinlandFranceFrench GuianaFrench PolynesiaFrench Southern TerritoriesGabonGambiaGeorgiaGermanyGhanaGibraltarGreeceGreenlandGrenadaGuadeloupeGuamGuatemalaGuernseyGuineaGuinea-BissauGuyanaHaitiHeard Island and McDonald IslandsHoly SeeHondurasHong KongHungaryIcelandIndiaIndonesiaIranIraqIrelandIsle of ManIsraelItalyJamaicaJapanJerseyJordanKazakhstanKenyaKiribatiKorea, Democratic People's Republic ofKorea, Republic ofKuwaitKyrgyzstanLao People's Democratic RepublicLatviaLebanonLesothoLiberiaLibyaLiechtensteinLithuaniaLuxembourgMacaoMadagascarMalawiMalaysiaMaldivesMaliMaltaMarshall IslandsMartiniqueMauritaniaMauritiusMayotteMexicoMicronesiaMoldovaMonacoMongoliaMontenegroMontserratMoroccoMozambiqueMyanmarNamibiaNauruNepalNetherlandsNew CaledoniaNew ZealandNicaraguaNigerNigeriaNiueNorfolk IslandNorth MacedoniaNorthern Mariana IslandsNorwayOmanPakistanPalauPalestine, State ofPanamaPapua New GuineaParaguayPeruPhilippinesPitcairnPolandPortugalPuerto RicoQatarRéunionRomaniaRussian FederationRwandaSaint BarthélemySaint Helena, Ascension and Tristan da CunhaSaint Kitts and NevisSaint LuciaSaint MartinSaint Pierre and MiquelonSaint Vincent and the GrenadinesSamoaSan MarinoSao Tome and PrincipeSaudi ArabiaSenegalSerbiaSeychellesSierra LeoneSingaporeSint MaartenSlovakiaSloveniaSolomon IslandsSomaliaSouth AfricaSouth Georgia and the South Sandwich IslandsSouth SudanSpainSri LankaSudanSurinameSvalbard and Jan MayenSwedenSwitzerlandSyria Arab RepublicTaiwanTajikistanTanzania, the United Republic ofThailandTimor-LesteTogoTokelauTongaTrinidad and TobagoTunisiaTürkiyeTurkmenistanTurks and Caicos IslandsTuvaluUgandaUkraineUnited Arab EmiratesUnited KingdomUnited StatesUruguayUS Minor Outlying IslandsUzbekistanVanuatuVenezuelaViet NamVirgin Islands, BritishVirgin Islands, U.S.Wallis and FutunaWestern SaharaYemenZambiaZimbabwe Country EthnicityCaucasianAfrican AmericanLatino or HispanicAsianSoutheast AsianNative AmericanNative Hawaiian or Pacific IslanderTwo or MoreOther/UnknownPrefer not to state Primary LanguageArabicEnglishSpanishBengaliBhojpuriChinese- MandarinChinese – Wu or ShanghaineseChinese – Yue or CantoneseFrenchGermanGujaratiHausaHindiIgboItalianJapaneseKoreanMarathiPersian IranianPortuguesePunjabiRussianTagalogTamilTeluguTurkishUkrainianUrduVietnameseOther Genderman/boywoman/girltransgendernon-binaryagendergender non-conforminggender fluidgenderqueertwo spiritothernone of theseprefer not to state Pronounhe/him/hisshe/her/hersthey/them/theirve/ver/visxe/xem/xyrze/zie Email\* Phone What is your connection to mito?\* Patient Parent Spouse Caregiver Son Daughter Sibling Grandparent Grandchild Aunt Uncle Cousin Niece Nephew Friend Teacher/Educator Medical Professional Physician Nurse Genetic Counselor Social Worker Researcher Industry Rep Other Diagnosis TypeGenetically ConfirmedClinical DiagnosisUndiagnosed What is your diagnosis?\* Alpers’ Disease ACAD9 Deficiency Autosomal Dominante Optic Atrophy (ADOA) Barth Syndrome CACT Deficiency CPEO Complex I Deficiency Complex II Deficiency Complex III Deficiency Complex IV Deficiency Complex V Deficiency CoQ10 Deficiency CPT I Deficiency CPT II Deficiency Creatine Deficiency Syndrome CUD/Primary Carnitine Deficiency Friedreich’s Ataxia GAII/MADD Deficiency Kearns-Sayre Syndrome (KSS) Lactic Acidosis LCHAD Deficiency Leigh Syndrome Leukodystrophy LHON LHON Plus Luft Disease MCAD Deficiency MCKAT Deficiency MELAS MEPAN MERRF MIRAS Mitochondrial Cytophy Mitochondrial DNA Depletion Mitochondrial Encencephalopathy Mitochondrial Myopathy MNGIE M/SCHAD Deficiency Multiple Mitochondrial Dysfunction Syndrome NARP Pearson Syndrome POLG Mutations POLG 2 Primary Mitochondrial Myopathy Pyruvate Carboxylase Deficiency Pyruvate Dehydrogenase Deficiency Pyruvate Dhydrogenase Complex Deficiency (PDCD) SCAD Deficiency Thymidine Kinase 2 Deficiency (TK2) VLCAD Deficiency Undiagnosed Other What is your child's diagnosis?\* Alpers’ Disease ACAD9 Deficiency Autosomal Dominante Optic Atrophy (ADOA) Barth Syndrome CACT Deficiency CPEO Complex I Deficiency Complex II Deficiency Complex III Deficiency Complex IV Deficiency Complex V Deficiency CoQ10 Deficiency CPT I Deficiency CPT II Deficiency Creatine Deficiency Syndrome CUD/Primary Carnitine Deficiency Friedreich’s Ataxia GAII/MADD Deficiency Kearns-Sayre Syndrome (KSS) Lactic Acidosis LCHAD Deficiency Leigh Syndrome Leukodystrophy LHON LHON Plus Luft Disease MCAD Deficiency MCKAT Deficiency MELAS MEPAN MERRF MIRAS Mitochondrial Cytophy Mitochondrial DNA Depletion Mitochondrial Encencephalopathy Mitochondrial Myopathy MNGIE M/SCHAD Deficiency Multiple Mitochondrial Dysfunction Syndrome NARP Pearson Syndrome POLG Mutations POLG 2 Primary Mitochondrial Myopathy Pyruvate Carboxylase Deficiency Pyruvate Dehydrogenase Deficiency Pyruvate Dhydrogenase Complex Deficiency (PDCD) SCAD Deficiency Thymidine Kinase 2 Deficiency (TK2) VLCAD Deficiency Undiagnosed Other What is your loved one's diagnosis?\* Alpers’ Disease ACAD9 Deficiency Autosomal Dominante Optic Atrophy (ADOA) Barth Syndrome CACT Deficiency CPEO Complex I Deficiency Complex II Deficiency Complex III Deficiency Complex IV Deficiency Complex V Deficiency CoQ10 Deficiency CPT I Deficiency CPT II Deficiency Creatine Deficiency Syndrome CUD/Primary Carnitine Deficiency Friedreich’s Ataxia GAII/MADD Deficiency Kearns-Sayre Syndrome (KSS) Lactic Acidosis LCHAD Deficiency Leigh Syndrome Leukodystrophy LHON LHON Plus Luft Disease MCAD Deficiency MCKAT Deficiency MELAS MEPAN MERRF MIRAS Mitochondrial Cytophy Mitochondrial DNA Depletion Mitochondrial Encencephalopathy Mitochondrial Myopathy MNGIE M/SCHAD Deficiency Multiple Mitochondrial Dysfunction Syndrome NARP Pearson Syndrome POLG Mutations POLG 2 Primary Mitochondrial Myopathy Pyruvate Carboxylase Deficiency Pyruvate Dehydrogenase Deficiency Pyruvate Dhydrogenase Complex Deficiency (PDCD) SCAD Deficiency Thymidine Kinase 2 Deficiency (TK2) VLCAD Deficiency Undiagnosed Other I would like to signup to receive the MitoAction Newsletter Yes, add me to the Newsletter list CAPTCHA Submit --- ### [New Patient Kit for FAOD](https://www.mitoaction.org/education/new-patient-kit/new-patient-kit-for-faod/) **Published:** April 3, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") View our FAOD New Patient Kit online, [download it as a PDF](https://www.mitoaction.org/wp-content/uploads/2021/05/FAOD-New-Patient-Kit-Updated-3_10_23.pdf "FAOD New Patient Kit – Updated 3_10_23"), or you can also request a paper copy of the using the form below. [FAOD-New-Patient-Kit-Updated-3\_10\_23](https://www.mitoaction.org/wp-content/uploads/2021/05/FAOD-New-Patient-Kit-Updated-3_10_23.pdf) ## Request a New Patient Kit (FAOD) "\*" indicates required fields X/Twitter This field is for validation purposes and should be left unchanged. Name\* First Last Address\* Street Address Address Line 2 City State / Province / Region ZIP / Postal Code AfghanistanÅland IslandsAlbaniaAlgeriaAmerican SamoaAndorraAngolaAnguillaAntarcticaAntigua and BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBoliviaBonaire, Sint Eustatius and SabaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBritish Indian Ocean TerritoryBrunei DarussalamBulgariaBurkina FasoBurundiCabo VerdeCambodiaCameroonCanadaCayman IslandsCentral African RepublicChadChileChinaChristmas IslandCocos IslandsColombiaComorosCongoCongo, Democratic Republic of theCook IslandsCosta RicaCôte d'IvoireCroatiaCubaCuraçaoCyprusCzechiaDenmarkDjiboutiDominicaDominican RepublicEcuadorEgyptEl SalvadorEquatorial GuineaEritreaEstoniaEswatiniEthiopiaFalkland IslandsFaroe IslandsFijiFinlandFranceFrench GuianaFrench PolynesiaFrench Southern TerritoriesGabonGambiaGeorgiaGermanyGhanaGibraltarGreeceGreenlandGrenadaGuadeloupeGuamGuatemalaGuernseyGuineaGuinea-BissauGuyanaHaitiHeard Island and McDonald IslandsHoly SeeHondurasHong KongHungaryIcelandIndiaIndonesiaIranIraqIrelandIsle of ManIsraelItalyJamaicaJapanJerseyJordanKazakhstanKenyaKiribatiKorea, Democratic People's Republic ofKorea, Republic ofKuwaitKyrgyzstanLao People's Democratic RepublicLatviaLebanonLesothoLiberiaLibyaLiechtensteinLithuaniaLuxembourgMacaoMadagascarMalawiMalaysiaMaldivesMaliMaltaMarshall IslandsMartiniqueMauritaniaMauritiusMayotteMexicoMicronesiaMoldovaMonacoMongoliaMontenegroMontserratMoroccoMozambiqueMyanmarNamibiaNauruNepalNetherlandsNew CaledoniaNew ZealandNicaraguaNigerNigeriaNiueNorfolk IslandNorth MacedoniaNorthern Mariana IslandsNorwayOmanPakistanPalauPalestine, State ofPanamaPapua New GuineaParaguayPeruPhilippinesPitcairnPolandPortugalPuerto RicoQatarRéunionRomaniaRussian FederationRwandaSaint BarthélemySaint Helena, Ascension and Tristan da CunhaSaint Kitts and NevisSaint LuciaSaint MartinSaint Pierre and MiquelonSaint Vincent and the GrenadinesSamoaSan MarinoSao Tome and PrincipeSaudi ArabiaSenegalSerbiaSeychellesSierra LeoneSingaporeSint MaartenSlovakiaSloveniaSolomon IslandsSomaliaSouth AfricaSouth Georgia and the South Sandwich IslandsSouth SudanSpainSri LankaSudanSurinameSvalbard and Jan MayenSwedenSwitzerlandSyria Arab RepublicTaiwanTajikistanTanzania, the United Republic ofThailandTimor-LesteTogoTokelauTongaTrinidad and TobagoTunisiaTürkiyeTurkmenistanTurks and Caicos IslandsTuvaluUgandaUkraineUnited Arab EmiratesUnited KingdomUnited StatesUruguayUS Minor Outlying IslandsUzbekistanVanuatuVenezuelaViet NamVirgin Islands, BritishVirgin Islands, U.S.Wallis and FutunaWestern SaharaYemenZambiaZimbabwe Country EthnicityCaucasianAfrican AmericanAsianSoutheast AsianNative AmericanNative Hawaiian or Pacific IslanderTwo or MoreOther/UnknownPrefer not to state Primary LanguageArabicEnglishSpanishBengaliBhojpuriChinese- MandarinChinese – Wu or ShanghaineseChinese – Yue or CantoneseFrenchGermanGujaratiHausaHindiIgboItalianJapaneseKoreanMarathiPersian IranianPortuguesePunjabiRussianTagalogTamilTeluguTurkishUkrainianUrduVietnameseOther Genderman/boywoman/girltransgendernon-binaryagendergender non-conforminggender fluidgenderqueertwo spiritothernone of theseprefer not to state Pronounhe/him/hisshe/her/hersthey/them/theirve/ver/visxe/xem/xyrze/zie Email\* Phone What is your connection to FAOD?\* Patient Parent Spouse Caregiver Son Daughter Sibling Grandparent Grandchild Aunt Uncle Cousin Niece Nephew Friend Teacher/Educator Medical Professional Physician Nurse Genetic Counselor Social Worker Researcher Industry Rep Other Diagnosis TypeGenetically ConfirmedClinical DiagnosisUndiagnosed What is your diagnosis?\* ACAD9 Deficiency CACT Deficiency CPT I Deficiency CPT II Deficiency CUD/Primary Carnitine Deficiency GAII/MADD Deficiency LCHAD Deficiency MCAD Deficiency MCKAT Deficiency M/SCHAD Deficiency SCAD Deficiency TFP VLCAD Deficiency Undiagnosed Other What is your child's diagnosis?\* ACAD9 Deficiency CACT Deficiency CPT I Deficiency CPT II Deficiency CUD/Primary Carnitine Deficiency GAII/MADD Deficiency LCHAD Deficiency MCAD Deficiency MCKAT Deficiency M/SCHAD Deficiency SCAD Deficiency TFP VLCAD Deficiency Undiagnosed Other What is your loved one's diagnosis?\* ACAD9 Deficiency CACT Deficiency CPT I Deficiency CPT II Deficiency CUD/Primary Carnitine Deficiency GAII/MADD Deficiency LCHAD Deficiency MCAD Deficiency MCKAT Deficiency M/SCHAD Deficiency SCAD Deficiency TFP VLCAD Deficiency Undiagnosed Other I would like to signup to receive the MitoMatters eNewsletter Yes, add me to the eNewsletter signup list Would you like to sign up for our mailing list?\*Mito NewslettersFAOD NewslettersBoth Mito & FAOD Newsletters CAPTCHA Submit --- ### [Clinical Trial Terms & Phrases](https://www.mitoaction.org/clinicaltrials/clinical-trial-terms/) **Published:** January 18, 2022 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Definitions of clinical trial terms that you may run across when evaluating clinical trials. If you run across a term you don’t understand and don’t see listed here, please [contact us](https://www.mitoaction.org/about-us/contact-us/ "Thanks for Contact Us"). **Active, not recruiting** — The study is ongoing, and participants are receiving an intervention or being examined, but potential participants are not currently being recruited or enrolled. **Adverse Event** — An unfavorable change in the health of a participant, including adnormal laboratory findings, that happens during a clinical study or within a certain amount of time after the study has ended. This change may or may not be caused by the intervention/treatment being studied. **Accepts healthy volunteers** — A type of eligibility criteria that indicates whether people who do not have the condition/disease being studied can participate in the clinical study. **Active comparator arm** — An arm type in which a group of participants receives an intervention/treatment considered to be effective or active by health care providers. **Arm type** — A general description for the clinical trial arm. It identifies the role of the intervention that participants receive. Types of arms include the experimental arm, active comparter arm, placedo comparter arm, sham comparter arm, and no intervention arm. **Behavioral Trials** — A research study in which one or more human participants are assigned to one or more interventions. In order to evaluate the effects of the intervention on health-related biomedical or behavioral outcomes. **Baseline characteristics** — Data collected at the beginning of a clinical study for all participants and for each arm or comparison group. These data demographics such as age, sex/gender, race and ethnicity, and study-specific measures (for example, systolic blood pressure, prior antidepressant treatment). **Clinical Trials** — Another name for an interventional study. **Cohort** — A group or subgroup of participants in an observational study that is assessed for biomedical or health outcomes. **Completed** — The study has ended normally, and participants are no longer being examined or treated. **Cross-over assignment** — A type of interventional model describing a clinical trial in which groups of participants receive two or more interventions in a specific order. For example two by two cross-over assignment involves two groups of participants. One group receives drug A during the initial phase of the trial, followed by drug B during a later phase. The other group receives drug B during the initial phase followed by drug A. So during the trial, participants “cross over” to the other drug. All participants receive drug And drug B at some point during the trial but in a different order, depending on the group to which they are assigned. **Data-Monitoring Committee (DMC)** — A group of independent scientists who monitor the safety and scientific integrity of a clinical trial. The DMC can recommend to the sponsor that the trial be stopped if it is not effective, is harming participants or is unlikely to serve its scientific purpose. Members are chosen based on the scientific skill and knowledge needed to monitor the particular data. **Diagnostic Trials** — Diagnostic trials are trials that are conducted to find better tests or procedures for diagnosing a particular disease or condition. **Double-Blind Study** — A type of clinical trial in which neither the participants nor the researcher knows which treatment or intervention participants are receiving until the clinical trial is over. **Early Phase 1** — A phase of research used to describe exploratory trials conducted before traditional phase 1 trial to investigate how or whether a drug affects the body. They involve very limited human exposure to the drug and no therapeutic or diagnostic goals. **Eligibility Criteria** — The key requirements that people who want to participate in a clinical must meet or the characteristics they must have. Eligibility criteria consist of both inclusion criteria and exclusion criteria. Types of eligibility criteria include whether a study accepts healthy volunteers, has age or age group requirements or is limited by sex. **End-points** — An endpoint is the primary outcome that is being measured by a clinical trial. **Enrolling by invitation** — A clinical study that selects its participants from a population or group of people decided on in advance by researchers **Exclusion Criteria** — A type of eligibility criteria. These are reasons that a person is not allowed to participate in a clinical study. **Enrollment** — The number of participants in a clinical study. The “estimated” enrollment is the target number of participants that the researchers need for the study. **Expanded Access** — A way for patients with serious diseases or conditions who cannot participate in a clinical trial to gain access to a medical product that has not been approved by the U.S. Food and Drug Administration. This is also called compassionate use. **Expanded Access Status: Available** — Expanded access is currently available for investigational treatment, and patients who are not participants in the clinical study may be able to gain access to the drug, biologic, or medical device being studied. **Expanded Access Status: No Longer Available** — Expanded Access was available for intervention previously but is not currently available and will not be available in the future. **Expanded Access Status: Temporarily not Available** — Expanded Access is not currently available for this intervention but is extended to be available in the future. **Expanded Access Status: Approved for marketing** — The intervention has been approved by the U.S. Food and Drug Administration for use by the public. **Expanded Access Type: Individual Patients** — Allows a single patient, with a serious disease or condition who cannot participate in a clinical trial, access to a drug or biological product that has not been approved by the FDA. This category also includes access in an emergency situation. **Expanded Access Type: Intermediate-size Population** — Allows more than one patient access to a drug or biological product that has not been approved by the FDA. This type of expanded access is used when multiple patients with the same disease or condition seek access to a specific drug or biological product has not been approved by the FDA. **Expanded Access Type: Treatment IND/ Protocol** — Allows a large, widespread population access to a drug or biological product that has not been approved by the FDA. This type of expanded access can only be provided if the product is already developed for marketing for the same use as the expanded access use. **Experimental Arm** — The identified role of the intervention that the participant receives that is the focus of the study. **Extension request** — In certain circumstances, a sponsor or investigator may request an extension to delay the standard results submission deadline. The request for an extension must demonstrate good cause. All requests must be reviewed and granted by the National Institute of Health. This process for review and granting of extension requests is being developed. **Factorial assignment** — A type of intervention model describing a clinical trial in which groups of participants receive one of several combinations of therapies or interventions. For example, a two-by-two factorial assignment would include four participation groups, where all possible combinations of interventions would be observed. (ie. all possible combos would be used: (1) drug A and drug B, (2) drug A and a placebo, (3) a placebo and drug B, or (4) a placebo and a placebo.) **FDA** — An agency within the U.S. Department of Health and Human Services. The FDA is responsible for protecting the public health by making sure that human and veterinary drugs, vaccines and other biological products, medical devices, the nation’s food supply, cosmetics, dietary supplements, and products that give off radiation are safe, effective, and secure. **First posted** — The date on which the study was first available on ClinicalTrials.gov after the National Library of Medicine quality review was conducted. There is typically a delay of a few days between the date the study sponsor/investigator submits the study record and the date it is posted. **Human subjects protection review board** — A group of people who review, approve, and monitor the clinical study’s protocol. Their role is to protect the rights and welfare of people participating in a study such as reviewing the informed consent form. The group typically includes people with varying backgrounds, including a community member, to make sure that research activities conducted by an organization are completely and adequately reviewed. **Inclusion Criteria** — A type of eligibility criteria. These are the reasons that a person is allowed to participate in a clinical study. **Informed Consent** — A process used by researchers to communicate to potential and enrolled participants the risks and potential benefits of participating in a clinical study. **Interventional model** — The general design of the strategy for assigning intervention to participate in a clinical study. Types of intervention models include: single group assignment, parallel assignment, cross over the assignment, and factorial assignment. **Interventional study (clinical trial)** — A type of clinical study in which participants are assigned to groups that receive one or more interventions/treatments so that researchers can evaluate the effects of the intervention on biomedical or health-related outcomes. The assignments are determined by the study’s protocol. Participants may receive diagnostic, therapeutic, or other types of interventions. **Investigator** — A researcher involved in a clinical study. **IRB** — Institutional Review Board- an independent ethics committee for the methods of research. **Masking** — A clinical trial design strategy in which one or more parties involved in the trial, such as the investigator or participants, do not know which participants were assigned which interventions. Types of masking include single-blind masking and double-blind masking. **NIH** — National Institute of Health **Not yet recruiting** — The study has not started recruiting participants. **Observational Trials** — Studies geared to find what happens to people in different situations based on people observing others. **Outcome Measure** — The result of a treatment or intervention that is used to objectively determine the baseline function of a patient at the beginning of the clinical trial. **Parallel Assignment** — A interventional model in which two or more groups of participants receive different interventions. **Patient Registry** — A type of observational study that collects information about patients’ medical conditions and/or treatments to better understand how a condition or treatment affects patients in the real world. **Phase 1** — A phase of research to describe clinical trials that focuses on the safety of a drug. The goal is to determine the drug’s most frequent and serious adverse effects and, often, how the drug is broken down and excreted by the body. These trials usually involve a small number of participants. **Phase 2** — A phase of research to describe clinical trials that gather preliminary data on whether a drug works in people who have a certain condition/disease. **Phase 3** — A phase of research to describe clinical trials that gather more information about a drug’s safety and effectiveness by studying different populations and different dosages and by using the drug in combination with other drugs. These studies typically involve more participants. **Phase 4** — A phase of research to describe clinical trials occurring after FDA has approved a drug for marketing. They include postmarketing requirements and commitment studies that are required of or agreed to by the study sponsor. These trials gather additional information about a drug’s safety, efficacy, or optimal use. **Placebo** — An inactive substance or treatment that looks the same as, and is given in the same way as, an active drug or intervention/treatment being studied. **Placebo-controlled** — Some patients exclusively receive the study drug or treatment and some patients exclusively receive a placebo. **Placebo crossover** — Study includes a point whereby participants change study arms, although the timing of that change and whether drug or placebo is received remains blind to all. Some may take placebo for 4 weeks, have a 2-week wash-out with no drug or placebo, and then switch to taking the study for 4 weeks, for example. Others in the same study would begin with study drug for 4 weeks, 2-week wash-out and then cross over to take the placebo for 4 weeks. **Prevention Trials** — FInding ways to prevent particular medical conditions or if people have them already, to prevent them from reoccurring. **Principal Investigator** — The person who is responsible for the scientific and technical direction of the entire clinical study. **Protocol** — Documents that describe the objectives, design, methodology, statistical considerations, and aspects related to the organization of clinical trials. **Quality Control** — Procedures which ensure protection of human subjects from research risk, reliability of the data, and thereby assure internal consistency. **Quality of life trials** — Clinical trials that involve the best way to improve quality of life conditions for patients with a chronic illness. **Randomized** — The arm of the study (active treatment arm or placebo arm) that the patient will follow is determined by a flip of a coin (or like randomizing procedure). **Randomized Allocation** — A type of allocation strategy in which participants are assigned to the groups of participants of a clinical trial by chance. **Recruiting** — Patient recruitment includes a variety of services typically performed by a Patient Recruitment Service Provider to increase enrollment into clinical trials. **Recruitment Status** — In a clinical trial, the current status for participants indicates what stage the trial is in. **Reporting group** — A grouping of participants in a clinical study that is used for summarizing the data collected during the study. This grouping may be the same as or different from a study arm or group. **Results database** — A structured online system that provides the public with access to registration and summary results information for completed or terminated clinical studies. The ClinicalTrials.gov results database became available in September 2008. Older studies are unlikely to have results available in the database. **Safeguards and Ombudsmen** — Many checks and balances are in place to ensure safety. **Screening Trials** — The process to determine if you qualify for the trial. **Sham Comparter arm** — An arm type in which a group of participants receives a procedure or device that appears to be the same as the actual procedure or device being studied but does not contain active processes or components. **Single group assignment** — A type of intervention model describing a clinical trial in which all of the participants receive the same intervention/treatment. **Sponsor** — A person, company, institution, group, or organization that oversees or pays for a clinical trial and collects and analyses the data. **Suspended** — The study has stopped early but may start again. **Study registry** — A structured online system, such as ClinicalTrials.gov , that provides the public with access to summary information about ongoing and completed clinical studies. **Study record** — An entry on Clinicaltrials.gov that contains a summary of a clinical study’s protocol information, including the recruitment status; eligibility criteria; contact information; and in some cases, summary results. **Study results** — A study record that includes the summary results posted in the ClinicalTrials.gov results database. Summary results information includes participant flow, baseline characteristics, outcome measures, and adverse events (including serious adverse events). **Terminated** — The study has stopped early and will not start again. **Treatment Trials** — Clinical trials advance through four phases to test a treatment, find the appropriate dosage, and look for side effects. If after the first three phases, researchers find a drug or other intervention to be safe and effective, the FDA approves it for clinical use and continues to monitor its effects. **Unknown** — A study on Clinicaltrials.gov whose last known status was recruiting; not yet recruiting; or active, not recruiting but that has passed its completion date, and the status has not been last verified within the past 2 years. **Withdrawn** — The study stopped early, before enrolling its first participants. --- ### [Social Media & Online Interactions](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/social-media/) **Published:** May 29, 2019 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Social media can be a tremendous source of support for families dealing with mitochondrial disease and other rare disorders. Many parents participate in Facebook groups and email listservs as well as maintain CaringBridge, CarePages or other personal websites documenting their child’s medical journey. Unfortunately, child protection teams at hospitals around the country have started to pull examples of “attention-seeking behavior” from a family’s online presence. Child protection teams now routinely turn to social media, online support groups or family blogs for evidence against family members in Medical Child Abuse cases. Sadly, well-meaning CaringBridge, CarePages and personal websites have been used against families (sometimes out of context), and Facebook posts are routinely examined as well. Even programs meant to be as supportive as Make-A-Wish and Beads of Courage have been used against families in Medical Child Abuse cases. Be especially careful with Facebook; even if a Facebook profile is set to the highest level of security, posts from online Facebook groups and other websites can be used against families. When joining an online support group, especially on Facebook, be sure to check if the group is an open group, a closed group or a secret group. In an open group, anyone will be able to see what you post even if you are not Facebook friends with them. Closed and secret groups offer a bit more privacy, but remember that group members can still see what you post. ## Considerations for using Social Media In light of the frequent use of social media use in child protection cases, it is important to consider the following pointers: - Consider using phone, text, or email communication as your primary way of sharing information about your child. - If you use social media, consider not making pages open to people you do not know well, as this preserves yours and your child’s privacy, and decreases chances of being accused of exploiting your child’s illness. - Be aware that posting pictures of children with medical equipment showing (such as in the ICU, after surgeries, with shirts off showing feeding tubes, Central Lines, etc.) has \*successfully\* been used to accuse parents of “medical exploitation” of their children as part of medical abuse accusations. - Be aware that if you are accused of Medical Child Abuse, your social media and blog posts about your child can be recovered, even if you erase them, and they can be used against you. - Posts that emphasize children as “very sick” or seem dramatic, exaggerated, or overly pessimistic about a child’s health condition have \*successfully\* been used to accuse parents of exaggerating or misrepresenting their child’s medical condition as part of medical abuse cases. - Keep in mind, other people who read about your child may interpret your descriptions as dramatic or exaggerated even if you don’t intend that. You cannot control how others view your posts, so be careful of how you phrase information about your child’s condition. - Be sure to present a balanced view of your child, as more than just his or her illness. Show good days, happy times, successes, and ways in which your child improves or gets better, as often as you can. - When in doubt, *less is more* when sharing information about your child’s condition in a setting with people you don’t know personally. **Above all, it is important to remember etiquette in any social media or online interaction.** Never say anything online or in social media that you would not want reprinted on the front page of the New York Times. Keep in mind these three key rules of thumb for social media interactions: 1. Be accountable for what you say … you can’t take it back! 2. Be accountable for the pictures you post … you can’t take them back! 3. Be accountable for the part you play in the Mito community … you can’t take anything back! --- ### [FAOD Treatment](https://www.mitoaction.org/fatty-acid-oxidation-disorders/faod-treatment/) **Published:** December 14, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") We need to eat to maintain our energy. Fat plays many important roles in the body as a food source: - Fat provides a very important source of energy for the body as a whole, especially during fasting. - Fat serves the skeletal muscles as an energy source during prolonged exercise. - A healthy liver converts fats into a substance know as ketones which circulate around the body as a source of energy for the brain and other organs. Managing symptoms, energy demands and nutrition are key components to successfully navigate FAOD. ## Energy Management - **Illness.** Illnesses associated with a poor appetite can endanger an individual with an FAOD. Wash hands frequently and avoid unnecessary infectious exposures. - **Fasting (length of time between meals)**. Avoiding prolonged fasting is a basis for treatment. The duration of safe fasting varies at different ages. Infants and young children may need to be wakened or reminded to eat at frequent intervals. Some children who are not good eaters may need snacks at bedtime or during the night. Some young children may need supplemental feeding or a feeding tube to provide continuous feeding until the body matures to handle an interval of time without food. Older children and adults need to follow a schedule for snacks regularly during the day to prevent an energy crisis. ## Nutrition Some treatments involve a low fat/high carbohydrate diet as individuals with FAODs do well with a regular source of carbohydrates during the day. Treatment can involve particular supplements or nutrients. Some patients benefit from medium chain triglyceride oil (MCT oil) or Dijolvi (triheptanoin), a special type of medium chain oil for the treatment of long chain FAOD. Nutritional plans vary based upon individual needs of the patient. The table below lists a few strategies used in the treatment of FAODs. **Dietary Treatment and** **Supplements****Rationale for Therapy**Low Fat/High Protein and Carb DietEnsures glucose or carbohydrates as a usable energy source. Reduces burden of fat for individuals who have trouble metabolizing fat. Usually a heart healthy diet provides an adequate amount of dietary fat.Carnitine supplementationCarnitine binds the accumulating abnormal fat compounds in the body and facilitates their excretion. Supplementation may not be required if blood levels are normal. In carnitine uptake defect (CUD), carnitine is life-saving.Medium Chain Triglyceride (MCT) or Dijolvi (triheptanoin)In patients with long-chain fatty acid oxidation disorders, these medium-chain supplements provide a safe and usable source of fat. Patients with MCAD deficiency should not use MCT oil or triheptanoin as they are toxic to them.RiboflavinRiboflavin is a vitamin needed by certain enzymes to function. Specific FAODs may respond to a riboflavin supplement.CoQ10 or Coenzyme Q10Coenzyme Q10 (CoQ10) is a substance that supports ATP production in the mitochondria. Supplementing with CoQ10 can help people with certain forms of FAOD reduce symptoms and improve energyResearch and development are underway to identify new treatments for FAODs. Visit the MitoAction website at www.mitoaction.org and INFORM at www.informnetwork.org to stay updated on current clinical trials. ## Illness and Infection If an illness or infection is associated with a diminished appetite and caloric intake is reduced, an FAOD patient is at risk of developing acute and potentially life-threatening symptoms. An individual may stop eating, start vomiting, become sleepy or unresponsive. At these times, hydration and IV fluid therapy with glucose is the best way to restore necessary energy to the body. This is provided in the ER setting. Here are some helpful tips for a hospital visit: Carry an emergency protocol provided by your doctor that explains the disorder and management recommendations. - Wear a Medic Alert bracelet or similar device. - Anticipate placement of an IV line for fluids with glucose. - Make sure the ER physician is aware of all medication and supplements you are taking. *Important: Treatments for FAODs include various options beyond medication. A physician should always guide specific treatments. Patients should not take any supplements or try any treatment unless prescribed by a doctor.* --- ### [The Spoon Theory](https://www.mitoaction.org/day-to-day-with-mito/managing-your-energy/the-spoon-theory/) **Published:** March 9, 2020 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=jn5IBsm49Rk Many people don’t think twice about the energy it takes to shower, get dressed, or drive to work. Most people can go to the grocery store in the morning and make dinner in the evening. When you have chronic illness, like mitochondrial disease, you’re not like most people. Mito and many other conditions can cause extreme fatigue. On a bad day, you may not have the strength to even brush your teeth. In a blog titled “[The Spoon Theory](https://www.mitoaction.org/wp-content/uploads/2023/03/BYDLS-TheSpoonTheory.pdf),” Christine Miserandino describes how she showed her friend what it’s like to have lupus. Lupus often causes fatigue, fever, and joint pain, among other symptoms. While sitting at a diner, Miserandino handed her friend a “bouquet” of 12 spoons. Each spoon represented a unit of energy. She then asked her friend to describe what her typical day looks like. Miserandino took away a spoon for every task that she completed: showering, getting dressed with painful joints, standing on a train. Skipping lunch would also cost a spoon. When the spoons were gone, it meant there was barely energy to do anything else. This idea of quantifying energy as spoons, and the idea that people with chronic disease only get a handful of spoons each day, hit home with readers far and wide. “Spoon theory” is now part of the lingo of autoimmune disease. Legions of people call themselves “spoonies,” connect on social media as #spoonies, use spoon theory to explain their chronic disease limitations, and plan their days around the number of spoons they have when they wake up. --- ### [Children with Mito](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/children-with-mito/) **Published:** December 21, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > *“I don’t want to be this sick kid; I want to be a NORMAL kid.”* How many times have you heard your child say this sentence or you know has thought about it? You see other kids out playing sports and going to school every day. You wish that you child could do that, too, instead of sitting home and resting or taking so many medicines a day. Other kids wish they could miss as much school as your child does. They may even think he or she is lucky that they get to stay home so much. Yet, all you really want is for your child to be healthy enough to go to school, play with the other kids, or go out to the movies every once in a while with friends. It’s difficult going to the doctors so much and needing to be in the hospital because of mito. **ACTIVITIES**, such as scouting, art classes, chess clubs, etc., are an important part of a kid’s life. Most of these don’t require a lot of energy and are fun. **LOCAL SUPPORT GROUPS** are very helpful. If one is not available, start one. You may be surprised at how many kids in your school have a chronic illness and would really like to be part of a support group. It’s worth asking your school nurse or guidance office if an activity such as this would earn you curriculum credits in the study. When you have a disease such as mitochondrial disease, that is not well understood and is as hard to say, it is hard for other kids to truly understand what you are going through. They may think that you look too healthy to be missing so much school or they may misjudge how smart you are just because you are in a wheelchair. Anyone who is coping with a chronic illness is going to wish every once in a while that they didn’t have the struggles that go along with it. If you didn’t want to be “normal,” that would be abnormal! What can you do to help feel like a typical kid? What qualities do you have that you can use to still have fun and be around other kids your age? Here are some things to think about and discuss with your child: #### Learn to Pace Yourself This is one of the hardest tasks to learn how to do. Since your child’s body doesn’t make enough energy to keep moving all day, saving energy before fun activities so that he or she can still participate with friends is important. This may mean taking a nap in the afternoon, resting the day before, or taking breaks throughout the day. Every week, make a list with your child of a few activities that are really important. Then, figure out ways to help save some energy before each of those things. This way your child’s body will have enough fuel to do some of the things he or she loves to do. This will require planning ahead of time but will allow him or her to participate in fun activities. #### Talk to the Kids in Your School About Your Illness Depending on how old your child is, you may go about this differently. If other kids at school understand your child needs more rest, they may be more willing to do things at his or her pace instead of theirs. For example, it’s a really hot day and going outside for recess is not an option. Maybe a few friends would want to stay in to play inside so they can be with your child. For younger kids, some families have created kids’ storybooks just for their child to show to their classmates so they understand mito. Some other kids have asked their nurse or social worker to talk to their class about mito. As you child approaches middle school and high school, this becomes harder to do. But it’s still important to tell a few close friends about mito so that they can understand what your child is going through. You just may be surprised how supportive friends will be! #### Think About Going to Camp for Kids with Illnesses or Disabilities What you will realize as soon as you arrive at camp is that every single kid at camp understands your child’s journey with an illness. Every single kid at the camp will take a lot of medicines every day or have to see the doctor a lot. Everyone is dealing with similar challenges and it’s a wonderful opportunity to make new friends who understand your child. MitoAction has a partnership with Serious Fun Camps across the United States and this is a great opportunity to attend a camp with other children with mito. You can learn more through our [Matthew Harty Camper Fund.](https://www.mitoaction.org/programs-support/mhcf/)[](https://www.mitoaction.org/wp-admin/post.php?post=180&action=edit) --- ### [Sexuality and Mito](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/adults-with-mito/sexuality-and-mito/) **Published:** July 19, 2019 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Sexuality is an important contributor to quality of life in many patients with chronic illness that needs attention. Similarly, sexual education should not be neglected in children with mito. Sexuality is part of who we are and how we relate to others, but more specifically, encompasses how we share intimacy and love with another person, often a lifelong soulmate. Knowledge of sexuality, a healthy self-esteem, and adaptations made in sexual relationships all play an important role in a healthy sex life. Maintaining healthy sexuality, despite the demands of mito, will take some work and good communication, but is a goal well worth the effort. ### People living with mitochondrial disease face challenges and barriers to rewarding sexual **relationships:** - Issues of self-worth, made more difficult by the media and society’s views of a disability - Pressures for perfection felt more intensely in those with losses - Physical disabilities, including the presence of feeding tubes and catheters, surgical scars, and mental confusion, add to body image disturbances and can make intimacy feel awkward - Low self-esteem or struggle for sexual self-esteem - Feelings of dependency relating to the mitochondrial illness - Pain in certain positions or with movement - Fatigue, nausea, and other mito symptoms can become a barrier to intimacy - Energy – lack of energy for sex dramatically decrease libido. - Medications may also decrease libido. - The American Association of Sexuality Educators, Counselors, and Therapist state that many have a reactive loss of interest in intimacy often due to the trauma of the diagnosis and resulting anxiety and depression. ### Steps to Positive Intimacy A positive body image is an important part of self-esteem and having a healthy self-esteem is vital to establishing intimacy with others. - Know your body, how it functions, and be comfortable with your body as it is. - Validate yourself both for past accomplishments and for present effort. - Be aware of negative thoughts about your self-esteem as those thought may take on a life of their own to hurt relationships. - Realize that those with mito can be sexy/be a sexual person. - Talk to people with similar problems and/or support group - Share feelings and receive support and validation. - Consult books, videos and films for information may be helpful. - Communicate with your partner about needs and adjustments needed for intimacy and pleasure. - Physical pain, cramping, muscular weakness, or fatigue may interfere with sensual bodily sensations and sexual activities when you are living with mitochondrial disease. Being open to alternative therapies and techniques to relax and lessen your body’s physical stress may be helpful. ### Improving Physical Pleasure - Hot baths, or time in a whirlpool or Jacuzzi - Dance is one way to connect with your partner in an intimate way - Massage with scented oils or lotion - Aromatherapy before the sexual activity - Focus on the process, not on the outcome, of the sex act itself - Talk about what does and does not work, and what does and does not feel good. - Communicate feelings, fears, past experiences and current expectations. - Foreplay may be a substitute for, not merely an adjunct to, intercourse itself - Realize that even foreplay may be limited due to fatigue - Use alternate positions for intercourse as necessary due to pain, muscle cramping or weakness - Try different positions to accommodate various tubes or infusion lines ### Sexual arousal and physical pleasure can be affected by many things, including stress, loss of sensation, low self-esteem, chronic pain, and drug use. Increase the environment of sexual intimacy by: - Massage - Sensitive touch to the whole body - Merely holding each other - Use of scented candles - A warming fire - A romantic meal - Moving music - Sharing any activity that is kept just between partners/spouses ### Suggestions for men who have difficulty attaining an erection: - Viagra, testosterone and other similar medications - Hand-held vacuum pumps, - Ejection therapy - Penile implants - Stop smoking and limit alcohol - Medication review to assess medication impact on sexual function - Discuss options with primary care or urology staff ### Suggestions for women: - Viagra is known to be an option - Commercial warming lubricants such as KY - Medications can help with vaginal dryness and atrophy - Medication review to assess impact on sexual function - Stop smoking and limit alcohol - Discuss options with primary care or GYN staff For both men and women, realize that having an orgasm is not essential to sharing a warm loving relationship with a partner. Being open to experimenting with a variety of postures and techniques can make sexual activities rewarding and keep intimacy as an important and healthy part of life. Talking about healthy sexuality with your partner and your medical team will aid in find that path to a health sexuality. --- ### [Marriage and Mito](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/adults-with-mito/marriage-and-mito/) **Published:** September 23, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") “Sometimes I feel like the nurse, the advocate, the case manager, the social worker – and nothing is left at the end of the day for my spouse.” Mito is a particularly difficult chronic illness for a partner (not to mention the patient) to understand. With its ill-defined nature and tremendous variety of health problems, the difficulty with diagnosis and uncertainty over the progression of the disease complicates matters. Some things to keep in mind and might help you and your partner are: - Communication - Make a new plan - Remember what brought you together ### Communication Good communication is the most important aspect of any relationship. This is particularly important between a Mito patient and his or her partner. It is important to communicate how you feel on any particular day as this can vary so much from day to day with Mito patients and is a hard thing for other people to grasp. This is particularly true with the adult-onset form of the disease, where a partner is used to a more active spouse. The chronic and extreme need for rest by the Mito patient may be the hardest thing for the non-involved spouse to understand and live with. An inspirational story is called [the Spoon Theory](https://www.mitoaction.org/wp-content/uploads/2023/03/BYDLS-TheSpoonTheory.pdf). This story can really go a long way to helping put into words what you are feeling. ### Make a new plan A plan can be developed of how to share the tasks of the family for that day. It will not serve you or the family well if you try and take on more than you are actually able to do. Partners should plan who takes responsibility for what tasks. Many times, a Mito patient only has so many “good” hours in the day in which to function. Let your partner be aware of this, and you can plan together how to best “spend” your time that day. It is important that both partners be aware of each other’s priorities to be able to meet them daily. Naturally, expectations have to be lowered to some degree to accommodate the needs of the patient. When the Mito-involved partner is feeling particularly ill or tired, this too needs to be communicated so that the expectations are lowered for that particular time and the non-affected spouse knows he or she needs to contribute more to the working of the family. It is important for the Mito patient to realize that the non-afflicted spouse also has needs to have some fun time away from the house and responsibilities. ### Remember what brought you together In this busy world of ours it is often difficult to find time for our partner when dealing with the multiple demands of a home, family and job. Add multiple health problems presented by mitochondrial disease, and this situation becomes that much more difficult. However, as in all relationships, it remains very important to find the time to nurture the relationship and find activities that a couple can do together. In the case of mitochondrial disease, these activities are probably by necessity quiet sorts of things, such as watching a movie, having a quiet dinner together, etc. It is important to try and find some money in the budget to pay for a babysitter to allow for these together times. It is important that the afflicted partner realize that his or her disease is not necessarily the most important aspect of family life and try not to demand too much attention to the detriment of their partner and family as a whole. It is a good idea if the Mito patient tries to keep up his or her appearance as much as possible. Not only is this good for his or her own feelings of well-being but for their partner’s as well. If you are having difficulty accepting this new version of yourself, seek counseling. Grief is a normal feeling when coping with mitochondrial disease, but if feelings of sadness or anger are predominant emotions, this can take a toll on your relationship. Even the most compassionate partner can feel resentment when confronted daily by the onslaught of negative or hostile emotions. However, the spouse of the Mito patient needs to know that their partner is suffering, not only physical discomforts but the psychological effects of dealing with a serious chronic disease. These feelings need to be discussed between the partners, to include each person’s feelings toward the illness. As always, if you and your partner are having a hard time talking about these difficult issues, it could be wise to seek the help of a professional counselor. Know that you are not alone on this journey, and we encourage you and a your spouse to join our [Weekly Support Calls](https://www.mitoaction.org/programs-support/weekly-support-calls/weekly-support-calls/) or call [Mito411](https://www.mitoaction.org/programs-support/mito411/) for support. --- ### [Managing Your Family](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/adults-with-mito/managing-your-family/) **Published:** September 23, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Being a parent with mito, it can be increasingly difficult to manage the day-to-day activities of your household. Remember, you’re not in this alone and you don’t have to do it all by yourself. Here are a few tips to help you manage your day: ### Resting whenever possible is most important If children are still young and take naps, it is a good idea to nap when the child does or nap while older children are at school. Have your children watch a video or TV show for a certain period of “quiet time” for everyone. This requires a mind-set that overlooks the possible untidiness of the house! ### Pre-plan Try to schedule fun activities with your children in your highest energy periods, then quieter activities later in the day when you are more likely to be tired. When a parent has a chronic illness, it is important that he/she focus attention on what really matters — personal relationships, not a perfectly clean house. One of the most time-consuming aspects of modern child rearing is taking children to and from various extracurricular activities. With Mito as an extra unwelcome member of the family, it is important to limit each child to only a few activities. This helps to reduce the total driving/activity time outside the home. It is helpful to arrange a car pool if possible with other parents of children in the same activities to reduce total driving time. If a friend offers to do an errand for you, accept their kindness. Never refuse any offers for help! As a person with Mito, you must swallow your pride and take anyone up on his or her offers. And it is very important to always remember, “If you don’t take care of yourself, you can’t take care of anyone else, either!” Using easy-to-prepare meals is another way to save more energy that can be devoted to the family. Since people with Mito may have GI motility problems, meal preparation might be difficult from a nausea perspective. Try to prepare foods that are nutritious for your children and spouse but can also be tolerated by you “the Mito parent,” so you don’t have to prepare something special for yourself. ### Divide and Conquer If the parent with mito is still able to work outside of the home, it becomes important to prioritize time and family needs. If it’s possible to hire a house cleaning service, this is a wonderful saving of energy and time. If not, try to break down chores and assign different family members certain responsibilities according to his or her age. Even a toddler would be pleased to run and get a simple object for a parent and save them a few steps. --- ### [Advocating for Yourself](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/adults-with-mito/advocating-for-yourself/) **Published:** September 23, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") “I wish the doctors could figure out what’s wrong with me or my child. We have been feeling sick for so long and nobody seems to know what to do.” How do we, as patients, learn to speak up and advocate for ourselves in these situations? What is the best way to learn how to stand up for your needs or those of your child? You need to be prepared with the knowledge necessary to keep yourself as healthy as possible. This includes basic knowledge of mitochondrial disease, what to do in emergency situations, and whom to contact when a problem arises. Here are some steps to take so you can advocate for yourself effectively. 1. **Educate yourself.** This is one of the best ways to become your own best advocate. Read information on mitochondrial disease. Ask questions and become informed about treatments and ways to improve your care. When a doctor doesn’t know much about mitochondrial disease, take a medical article or a brochure on mitochondrial disease with you to the appointment so that he or she can be better informed. 2. **Educate your primary care physician (PCP) or pediatrician.** This doctor should be the central person to all of your medical care. Since mitochondrial disease is so complex and varies in presentation, your PCP is the person to start with. This doctor should be the “medical home” for you or your child. This means that ideally this doctor should be coordinating care between all of the specialists that you or your child sees. He or she should be your advocate and should understand the whole picture of what is going on with you/your child. Getting a doctor to understand mitochondrial disease and advocate for you is important, especially if you aren’t well enough to advocate for yourself or you are feeling overwhelmed with all the care that is involved. 3. **Write down questions and take notes during appointments**. This helps many people stay on target with the questions they want to ask during an appointment. It is easy to forget questions or become overwhelmed during an appointment but bringing a notepad with questions may help you stay focused on the most important issues. 4. **Bring someone with you to appointments.** Doctors’ appointments can be overwhelming. Often times, patients are soaking up a lot of information when they see a new specialist. It can be helpful to bring a spouse or a friend with you to help take notes or remember questions for you. It can also be helpful to have someone with you for support. It can be hard to go into an appointment when you don’t feel especially well or when your child is really sick. Having someone for support and to help you interpret information can be valuable. 5. **Find a mitochondrial specialist.** This doctor can guide you and your other doctors in the treatment of your particular symptoms. Finding a mitochondrial specialist is helpful in figuring out a diagnosis and learning certain tactics for living with mitochondrial disease. 6. **Request copies of your medical records**. Keeping copies of all of your records and lab reports can help all of your doctors see the full picture of your health. If you are going to a new specialist who has never met you, it will help to have those records available. This will make it easier for your doctors to understand what is going on with your health situation. 7. **Develop action plans for emergency situations**. This is extremely important in minimizing life threatening complications from mitochondrial disease. Make a plan with your primary care physician or mitochondrial specialist when you or your child is well so that you know what needs to be done in an emergency. For example, should certain bloodwork be done or should IV fluids containing glucose be started during an acute illness? Some mitochondrial specialists will write up a plan specifically for you or your child to be given to emergency department personnel. MitoAction has template [protocol letters](https://www.mitoaction.org/day-to-day-with-mito/changing-physicians/protocol/) that you can share with your doctor to have them customized specifically for your needs in an emergency situation. 8. **Keep records** of pertinent medical records, medications, primary physician contact information, lab sheets, articles about mitochondrial disease, and emergency protocols can be helpful, too. When an emergency arises, it’s easy to grab the binder on the way out the door. [MitoAction MyMito App](https://www.mitoaction.org/mitoaction_mobile/) is a great tool to help you keep things in order and to track your day-to-day. 9. **Request case management services** from your health insurer and/or state department of public health. They can assist as advocates for services and healthcare. They can also advocate for you when medications or medical equipment isn’t covered, but should be covered. 10. **Find a family representative.** Ask your doctor or case manager to put you in contact with another patient or family in the same situation. This is a very powerful tool. Some insurance companies and the Department of Public Health have parents on call to assist new patients/families. 11. **If necessary, find a new doctor.** If you have tried many of the above tactics and you still feel like you aren’t getting anywhere with your doctor then it may be time to find a new physician. Some doctors are too busy or may not have an interest in learning about mitochondrial disorders. If this is the case, it may be time to move on to someone new who can look at you from a different perspective. 12. **Join support groups.** MitoAction offers weekly support groups each Friday or feel free to contact us through the Mito411 helpline at (888) MITO-411. Lastly, you’re not alone! It seems to take most people a long time to get a diagnosis of mitochondrial disease. The diagnosis is difficult to obtain because the disease has so many different presentations. No two people with mitochondrial disease are alike. Primary care physicians often don’t have enough knowledge to make this diagnosis, so it is up to us to educate ourselves and find the best care for ourselves and our children. --- ### [Keeping Your Cool: Cooling Vest Types](https://www.mitoaction.org/day-to-day-with-mito/heat-intolerance/keeping-your-cool-cooling-vest-types/) **Published:** July 19, 2019 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") There are a variety of personal cooling systems that are available for purchase, and each style has unique advantages and drawbacks. Here is a brief summary of the three most popular systems: ### Evaporative Cooling Vest ![](https://www.mitoaction.org/wp-content/uploads/2019/07/Screen-Shot-2019-07-19-at-12.37.07-PM-300x277.png) These vests feel like terry cloth but have tiny pockets of highly absorbable beads that can take in water and expand to 6 times their dry size. The vest is soaked in cool water and gently wrung out to remove excess. The vest is placed over a t-shirt and cools by evaporation; the air moves faster next to the water-logged beads, which creates a layer of cool air between the vest and the skin. Evaporative cooling vests are light weight, inexpensive, and there is no need to purchase a second vest to swap; the vest can be re-wet and immediately used again. Evaporative cooling apparel is not limited to vests; headbands, wristbands, floor mats, and even dog vests are available for purchasing. If an evaporative vest is damaged, it can be re-sewn by hand. The function of the vest isn’t seriously compromised if a few beads escape. (The beads are non-toxic, but always check the vest carefully to avoid ingestion by a child.) Evaporative cooling vests are of limited benefit in humid environments and are sometimes not tolerated by individuals with sensitive skin due to the slight dampness of the garment. ### Phase Change Cooling Vests ![](https://www.mitoaction.org/wp-content/uploads/2019/07/Screen-Shot-2019-07-19-at-12.41.31-PM-300x277.png) This type of vest contains inserts that are activated by placing them in the freezer or a container of ice water, and then the inserts maintain a consistent temperature (usually 53-56 degreesF.) for up to three hours. The inserts can then be re-activated (10 to 20 minutes for activation) and reused. Many people choose to purchase an extra set of inserts and rotate them, so that the vest can be used continuously. The inserts are not exactly ice packs; they do not reach freezing temperatures so they are unlikely to cause damage if left in contact with bare skin. This makes them safe to use with young children or individuals who are unable to feel heat or cold due to neuropathy or communicate discomfort. They are activated when exposed to temperatures above freezing, and need much less time to recharge than an actual frozen ice pack would take. Also, the inserts do not “sweat” when the cold is being transferred to the wearer, so clothing stays dry. Phase change vests can be made to fit wearers of all ages and sizes, custom vests can be made for individuals weighing more or less than the displayed vests are recommended for. There are drawbacks to purchasing and using phase change vests. The inserts add weight to the vest, from 1 ½ to 2 lbs for children’s vests to 4 lbs or more for 3X or 4X adult sizes. Fortunately, the weight is evenly distributed on the body and is close to the individual’s center of gravity, so the balance issues associated with backpacks or weights shouldn’t be a problem. The cooling vest system is much more expensive than an evaporative vest; you can expect to pay around $200 for a vest and two sets of inserts. The phase change inserts are filled with a viscous fluid and are durable but not indestructible. If an insert is damaged it must be discarded and replaced. ### Hybrid Cooling Vests This vest combines the benefits of the evaporative as well as phase change vests. The user has the ability to choose between using the evaporative or phase change cooling methods, and can also choose to use both systems simultaneously to complement one another. This type of vest is new to the market, but customers who have purchased hybrid guests have reported high satisfaction rates. ### Cold Pack Cooling Vests ![](https://www.mitoaction.org/wp-content/uploads/2019/07/Screen-Shot-2019-07-19-at-1.03.52-PM-300x201.png) These vests look just like phase change cooling vests, but use actual ice packs that freeze at 32 degrees or in some cases, even colder. These cold packs give the highest level of cooling because the cold packs are the lowest temperature. These vests are effective in extreme humidity and very high temperatures. Extra packs can be added or changed out over time. There are several drawbacks to cold pack vests. The frozen inserts are generally heavier than phase change inserts, are usually inflexible when frozen, and must be returned to an actual freezer, below 32 degrees farenheight, to be refrozen, which can take several hours. Most frozen packs “sweat” while discharging cold energy, which some individuals may find uncomfortable. Most importantly, ice packs cannot be applied directly to skin and should never be used by individuals who may have impaired sensation, are asleep, or unable to communicate discomfort, as frostbite and serious injury can occur. ### Websites for purchasing cooling vests: [Heat Relief Depot](http://heatreliefdepot.com/coolingapparel.aspx) This company offers a discount to any customer who submits a note from a medical professional stating that the products are purchased for medical reasons. They do make children’s phase change cooling vests per special order. Several years ago, they were willing to make a vest for a 20lb toddler. Call for more information. [MScooling](http://www.mscooling.com/) This site offers all three vest styles in sizes that range from x-small (20″ length from shoulder to waist and 33″ torso circ. at the widest point) to xxx-large (25″L, 51″circ) [Texas Cool Vest](https://www.texascoolvest.com/) Phase change vest that is adjustable to fit from 6 y.o. child through small adult [Stacool Vest](https://stacoolvest.com) Phase change vest in 2 children’s sizes, $200+ [Coolweave](https://www.aviationpros.com/tools-equipment/safety-equipment/company/10017777/silver-eagle-outfitters-cooling-apparel)[ ](http://www.silvereagleoutfitters.com/) Silver Eagle Outfitter’s cooling vests ### Paying for cooling vests Cooling vests can be costly, but can dramatically improve the health, safety, and quality of life of an adult or child with Mito. Some cooling vest distributors will offer a 10%-25% discount on their products if they receive documentation that the vest or other products are purchased on a doctor’s recommendation. Save your receipt to submit the cost of cooling products towards your federal taxes. Some insurances may accept cooling vests as medical devices and while vendors are unable to submit insurance claims, you may be able to submit a claim yourself and request a refund. ### Keeping Cool Don’t forget about your other warm-weather strategies! Be sure to stay hydrated, take frequent breaks when working or playing outside, limit your time outside when the sun is most intense (usually 10am to 2pm), and use sunblock with an spf of 30 or higher and re-apply often. Always contact your doctor for specific suggestions related to heat intolerance management. With a little planning, you and or your child can welcome spring while keeping your cool. Enjoy! --- ### [FAOD Diagnosis](https://www.mitoaction.org/fatty-acid-oxidation-disorders/faod-diagnosis/) **Published:** December 14, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") There are over a dozen types of Fatty Acid Oxidation Disorders (FAODs) based upon which enzyme is affected that coverts fat to energy. Determining the specific enzyme that is affected helps guide the treatment. Infants undergo a newborn screening test during the first few days of their life using a dried blood spot specimen obtained in the nursery. These screenings test for a group of health disorders that aren’t otherwise detectable at birth and include disorders such as sickle cell anemia, cystic fibrosis and FAODs. Newborn screening occurs in every state, however the disease panel can differ from state to state. Since the turn of the century, close to 4 million babies undergo newborn screening annually in the U.S. Since 1990, the use of a scientific technique know as tandem mass spectrometry has enabled healthcare providers to detect a greater number of metabolic disorders including over a dozen FAODs. Early detection provides the best opportunity to identify affected babies and ensure the best outcome. Certain FAOD diagnoses have signature biochemical characteristics that are identified immediately by the newborn screen. An abnormal result on a newborn screening test does not necessarily guarantee that a child has a particular condition, but it is critical that you follow up with your physician for more extensive confirmatory testing. Typically, additional blood and urine testing must be done to confirm the specific FAOD diagnosis. The most common blood test performed for confirmation testing is the blood acylcarnitine test; the specific pattern of acylcarnitine can differentiate one disorder from the next. Sometimes, skin cells must be cultured or DNA tests in blood performed to show the specific enzyme deficiency. For adults and children who never underwent newborn screening, biochemical or genetic testing can help pinpoint a diagnosis. Genetic testing identifies alterations in the genes associated with the FAOD enzymes. Siblings of affected individuals, whether or not they are symptomatic, should be tested. FAODs are inherited in an autosomal recessive manner, meaning that an affected child receives a genetic mutation from each parent. Parents are non-symptomatic carriers who have a 25% chance in every pregnancy of having an affected child. Important organs such as the heart, liver or muscles may be affected by FAODs and require monitoring and specialized care from a cardiologist, neurologist and/or gastroenterologist. --- ### [FAOD Symptoms](https://www.mitoaction.org/fatty-acid-oxidation-disorders/faod-symptoms/) **Published:** December 14, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") In Fatty Acid Oxidation Disorders (FAODs), the body suffers from an energy deficiency during conditions such as fasting, prolonged exercise and infection. This creates a metabolic stress for the body and causes the symptoms characteristic of FAOD. Some severe FAODs can present in infancy but symptoms can differ based upon age, diagnosis and the severity of the metabolic stress. Common symptoms associated with FAODs include: - Muscle cramps and pain - Muscle weakness - Fatigue - Foggy thinking - Irritability - Vomiting - Poorly functioning heart (cardiomyopathy or arrhythmias) - Fatty, dysfunctional liver Caregivers and patients with FAODs should be aware of and watch for symptoms of a metabolic crisis including: - Acute muscle pain and weakness - Poor feeding or changes in appetite - Lethargy or unresponsiveness - Irregular heartbeat Symptoms can be triggered or worsened by fasting, illness, prolonged exercise, and other physiological stress. These factors can lead to the following if not managed: - Low glucose or low sugar (hypoglycemia), and usually low ketones - Muscle breakdown (rhabdomyolysis), presenting as dark urine (myoglobinuria) - Heart muscle damage (cardiomyopathy or arrhythmias) Sudden Infant Death Syndrome (SIDS) can occur in certain FAODs, usually in undiagnosed infants. Newborn screening helps identify patients before they become symptomatic, reducing the chance of illness and death. You should always consult your medical team if you or your child experience severe symptoms in order to determine the best course of action. --- ### [Matthew Harty Camper Fund Events](https://www.mitoaction.org/events/matthew-harty-camper-fund-events/) **Published:** December 14, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") # Matthew Harty Camper Fund Events Matthew Harty Camper Fund Events raise money for the Matthew Harty Camper Fund, the Matthew Harty Scholarship Fund and Wish Trips, and have helped improve the lives of hundreds of children and their families. ![](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-Matthew-Harty-Golf-Tournament-01-768x1024.jpg)## Matthew Harty Golf Tournament The Matthew Harty Golf Tournament plays an essential role in the financial support of three very impactful programs MitoAction provides, the Matthew Harty Camper Fund, the Matthew Harty Scholarship Fund and Wish Trips. Thanks to the generosity of our donors, we have had the privilege of sending over **385 children** with mitochondrial disease to summer camp and have awarded nearly **60 scholarships** to college students battling various mito diseases. [Learn More](https://www.mitoaction.org/events/matthew-harty-camper-fund-events/mhcfgolf/) ## Matthew Harty Mito Classic The Matthew Harty Mito Classic is a much anticipated event in the North Andover community. Proceeds from this event benefit the Matthew Harty Camp and Scholarship Fund, which sends children with mitochondrial disease to summer camp and provides college scholarships for Mito students and a student from North Andover High School. [Learn More](https://www.mitoaction.org/events/matthew-harty-camper-fund-events/mhmc/) ![](https://www.mitoaction.org/wp-content/uploads/2023/01/2019-Matthew-Harty-MitoClassic-01-1024x768.jpg) --- ### [Shop for MitoAction](https://www.mitoaction.org/join-the-cause/giving/shop-for-mitoaction-2/) **Published:** October 1, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Shop at any one of our retail partners listed below and help raise funds to support MitoAction: --- ### [Managing Your Energy](https://www.mitoaction.org/day-to-day-with-mito/managing-your-energy/) **Published:** May 22, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ## Dealing with the Fatigue of Mito The severe fatigue of mitochondrial disease (Mito) can be one of the most difficult symptoms that people with Mito suffer from. This article discusses the general overall tiredness experienced by people with Mito. The biggest overall principle to follow in dealing with fatigue is to “think” energy conservation techniques in everything you do. Energy conservation means looking at your daily routines to find ways to reduce the amount of effort needed to perform certain tasks, eliminating other tasks, and building more rest throughout the day. Keep in mind not every technique will work for you. These are suggestions you can use and adapt to find the right fit for you. Energy can be thought of as money, remember to spend your energy “money” wisely, you only have so much! One hurdle to using these listed energy conservation strategies is the amount of effort it takes to put some new organizational systems in place. This brings up another principle in dealing with the fatigue of mito; Learning to accept offers of help from others and learning to delegate tasks. While easier said than done, it will really go a long way to improving the quality of your life, especially when you realize that spending your energy money doing some easily delegated tasks will leave you too fatigued to read to your child, spend quality time with a loved one or just read a book. ## General Guidelines for Dealing with Fatigue ### Rearrange Your Environment - Keep frequently used items in a location where you will use them. This avoids having to carry them around or do extra walking to get them. - Replace existing heavy items with lighter one (plastic vs. glass). - Use good body mechanics – don’t carry equipment if you can push it. Slide, don’t lift, push, don’t pull. Maintain good posture. Bend at the knees, not the waist. Eliminate unnecessary motions. Use both hands when possible while carrying. Adjust work-spaces such as raising a tabletop to eliminate awkward positions. - Install long handles on faucets or doorknobs. - Consider moving your bed to the first floor to eliminate stair climbing. - Organize the kitchen for maximum efficiency. Place the most often used items on the lowest shelves. Make a cooking area having all pots and pans together close to the stove. Spices and utensils should also be as close to the cooking area as possible. Consult an occupational therapist to help personalize the ideas listed here and enlist a helper or two to rearrange your living environment. ### Eliminate any Unnecessary Effort - Sit rather than stand whenever possible, i.e.: when preparing food, washing dishes, when talking on the phone. - When dressing, sit, have your clothes at arm’s length, dressing the lower parts of your body first as this requires the most energy expenditure. Bring your feet up to you rather than bending down to them. Work slowly and methodically, resting when needed. Buy clothes that are easy to care for and put on. - Shower using a shower chair, remain sitting when shaving your legs instead of bending over, have a chair in the bathroom so you can sit while drying yourself. - Use adaptive equipment that is appropriate to your situation, i.e.: book holder, a jar opener, a reacher, text to speech software or hand-free headset for your phone. - Organize the method in which you work, repetition of the same methods will increase proficiency and save time and energy. - Soak your dishes before washing, let them air dry or consider using paper products. - Buy prepared foods and try to keep prepared healthy snacks available such as precooked hard-boiled eggs, cheese slices and fruit. - Shopping can be an exhausting activity so try to find a grocery store that accepts phone orders and delivers. A few large grocery chains have online ordering and delivering. If you go shopping, use electric carts or wheelchairs, which most large grocery stores make available. Other items are available from catalogs by mail, phone or the Internet. Take advantage of these effective alternative ways of shopping. Think of how many stores you can visit without leaving your chair! ### Plan Ahead - Pre-plan your activities and try to make a daily or weekly schedule. - Ask yourself a few questions: Is there too much to do on a single day? Are heavy tasks alternated with light ones? Are heavy tasks distributed throughout the week? Have I scheduled enough time to for activities with enough time between each one to rest? Rushing takes more energy! - Make fewer trips around the house; if you have stairs, organize your day so you minimize the need to climb them. - Cook in larger quantities and refrigerate or freeze extra portions. - Work rest breaks into activities as often as possible. Take a break before you get tired. - Try to plan some type of exercise into your weekly routine. Toned muscles require less energy to function. ### Prioritize - Eliminate or reduce tasks that aren’t that important you. - Remember to delegate tasks to family or friends who offer to help. - Consider hiring professionals, such as a cleaning service or lawn service, to cut down on your workload. - Decide what are the most important things in your life and spend your energy money on them. - Always listen to your body, know your limits and don’t let yourself become overtired. - If you do overdo it, try not to be too hard on yourself. Walking the Mito path is very challenging and learning how much activity is too much is sometimes determined by when we crash! The goal is to live a rich and full life with the least amounts of crashes as Mito-possible. --- ### [Enjoying Halloween with Your Family](https://www.mitoaction.org/day-to-day-with-mito/holiday-tips/enjoying-halloween-with-your-family/) **Published:** February 7, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Halloween is a big day for many families – decorations, costumes, parties, trick or treating, and gatherings now hallmark the day! Halloween, however, is often a bit scary for families with children who have chronic illnesses, including mitochondrial disease. Germ exposure, cold (or sometimes hot) temperatures, energy demands of parties and social interactions, mobility issues, treats that kids with GI issues cannot tolerate, even walking door to door, can all add to the stress of what is typically a fun day. We’d like to share these tips to keep Halloween safe for you and your family, and to keep all the scary goblins away! ## Costumes Allowing the child to help make or pick out the costume may be a fun adventure itself! Sometimes keeping Halloween simple is the way to go, but be creative and ask yourself the following: 1. How difficult is it to get in and out of the costume? 2. Does the costume make mobility more challenging? 3. Have you used bright and reflective materials? These will be best for door to door trick-or-treating in the dark. 4. Are you prepared for temperature challenges? Layer clothes under a costume for additional warmth. If you are in a hot climate, consider incorporating an “ice vest” into the costume idea to keep cool. 5. How can I incorporate my child’s medical device(s) into the costume? ## Mobility Considerations ![](https://www.mitoaction.org/wp-content/uploads/2022/10/halloween-2-300x225.jpg) Use flashlights. Small hazards can pose risks, as they can cause falls or injuries. Flashlights are a fun tool for children to use and can help prevent accidents. 1. Remember that face masks decrease vision and may add to falls and bumps! 2. Keep feet and legs free from bulky costumes to help prevent falls. 3. Use sidewalks when possible. 4. Use mobility aids, such as wheelchairs, walkers, canes when needed. Some find creative ways to incorporate mobility aids into the costume. ## Energy – Make It Last ![](https://www.mitoaction.org/wp-content/uploads/2022/10/halloween-pic-225x300.jpg) Adults and children with Mito have to work hard at energy conservation, and limiting energy expenditure. Coming up with a plan before the big day can help! Getting rest and eating/drinking well the day before can help start the day with a full battery! Remember that picking and choosing which Halloween events are most important will conserve energy and will yield happier children. Monitor your child’s battery and be prepared to head home or offer a place to rest when needed. Before your child heads to school on Halloween ask yourself: “Can my child be at school all day, walk in the school’s Halloween parade, ride the chaotic bus home, AND still have the energy to go hit every house in the neighborhood?” Staying at home and doing fun activities, instead of going house to house is a great alternative.Either way, on the day of Halloween, try to fit in an after school nap, and use a stroller, wagon, wheelchair, or take the car house to house to save that battery from hitting red! Keep in mind that many kids will need a few days to recharge their mito batteries after the big day. ## GI Issues – What to Do With All of Those Treats Many children with Mito cannot eat candy, but really enjoy the thrill of dressing up and going door to door in search of tricks and treats! Some parents drop off safe treats at neighborhood houses a few days prior to Halloween. Small toys, books, coins, tickets, handmade coupons, safe foods, and other treats can easily replace candy! Allowing your child to be the one to HAND OUT candy to those coming to your house can be a fun alternative to the demands of going door to door. Perhaps you can host a candy- free party to avoid the issue! Businesses and parents are known to offer trade-ins for collected candy, which can be fun too! 10 mini candy bars = Movie rental or new book. Giving up candy may be a tough one, so plan ahead and think creatively! ## Germs Reduce your family’s Halloween germ exposure by following a few simple tips! Hand washing is key, especially before eating. Wash your hands (or use sanitizer/wipes) before that treat hits the lips! Kids tend to want to sample the treats at every stop, but waiting until hands and faces are clean may just prevent that next virus from taking hold of your little one! Classroom parties can serve up a dose of germs as well. Having a child with Mito prepare his/her plate first can help. Providing the classroom or group with foods that are safe for your child can help the child feel more included in the event! Avoid community dips, bowls of chips, and plates to decrease viral load. ***Have fun! Be safe! Happy Halloween!*** --- ### [Living with Mitochondrial Disease](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/) **Published:** August 20, 2018 **Author:** mitoaction **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ### Adults with Mito For adult patients with mitochondrial disease, taking control of your disease and being an advocate for yourself can make all the difference on your journey. There are several ways to educate yourself when it comes to your care and treatment that can have a big impact on your life. [Learn More](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/adults-with-mito/) ### Children with Mito Finding ways to help children “just be a kid” can be so helpful. Involving them in local activities like scouting, art classes, or clubs are great ways to get them involved while being cognizant of the amount of energy they will have to expend. [Learn More](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/children-with-mito/) ### Teens & Young Adults with Mito Being a young adult with mito can feel isolating, especially when trying to help others to understand your disease. MitoAction is here to help you succeed with transitioning to adult health care and the next phase of life. [Learn More](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/teens-with-mito/)[](https://www.mitoaction.org/wp-admin/post.php?post=180&action=edit) ![](https://www.mitoaction.org/wp-content/uploads/2023/01/2021-MitoAction-Energy-Walk-Boston-Team-Matthew-01-1024x1024.jpg) --- ### [Teens and Young Adults with Mito](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/teens-with-mito/) **Published:** December 21, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Being a young adult with mito can be isolating, especially when trying to help others to understand your disease. MitoAction is here to help you succeed with transitioning to adult health care and the next phase of life. Patients, families, and health care providers have expressed a need for resources like this and we’ve heard you loud and clear. We’ve researched medical resources, and have talked to young people, parents, doctors, nurses, and patient advocates to find out what you want and need to know about. Our goal is to provide you with ways to communicate with friends, teachers, or anyone else seeking to support and understand your journey; tools to help guide your transition to adult health care; tips for success in college, employment, and independent living; and stories of real people with real experiences living their lives to the fullest. --- ### [Adults with Mito](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/adults-with-mito/) **Published:** December 21, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") For adult patients with mitochondrial disease, taking control of your disease and being an advocate for yourself can make all the difference on your journey with mito. There are several ways to educate yourself when it comes to your care and treatment that can have a big impact on your life. - Learn to be your own advocate by communicating effectively with your medical team members. - Don’t be afraid to share information with your primary care physician, especially when working with a non-mito specialist; take advantage of our website resources or share a copy of our New Patient Kit. - Building a medical team experienced with complex patients, preferably a Mito-knowledgeable team, can make all the difference. - Always voice your questions or concerns with medical staff and provide them with as much information as possible – often times writing down questions prior to appointments can help to ensure you address everything you need to. - Lastly, surround yourself with a support system to share experiences and offer advice in difficult situations and never forget that MitoAction is here to help! --- ### [College Tips](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/teens-with-mito/college-tips/) **Published:** September 23, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Making the decision to attend college when you are dealing with a rare disease can be difficult. There are so many factors that you have to consider that other students don’t such as accessibility for adaptive equipment, housing accommodations, support with classes and managing your energy to get through each day. Below are frequently asked questions about navigating the college experience that can help ease the stress of what should be an exciting time for you! We are going to visit some colleges that I am thinking of applying to. What should I look for when I go to visit the campus?Each college is going to be different regarding their approach to disabilities so as you go to the colleges to tour them, stop by the disability resource office and ask questions about how they would handle your needs. If the school doesn’t have this office, then talk to someone in the student affairs office. Students at smaller schools have said they can be helpful as well. You will want to get connected with this office even before the school year starts so that any accommodations you have are addressed before classes begin, such as a note taker when absent, tape recorder, wheelchair accessible classrooms. Also, take note of how far apart the dorms are from the classrooms, how large the campus is in general, how easy it would be to navigate if you had a wheelchair, etc. Think about your particular situation and your needs when you are walking around. Should I take full-time classes when I start my freshman year in college?My suggestion would be to start out slowly during your freshman year. You can catch up later if your health allows. Taking just one or two classes the first semester and building up to taking more if you can tolerate it will give you the feeling of success. I have seen many young people try to start out full time, which leads to difficulty if their illness is unpredictable. Some of these young people have had to drop all of their classes because they found it too difficult to keep up. Taking a few classes the first semester allows you to test the waters before jumping in. When I started college, this worked really well for me since I could see how much I could handle and then I could add more classes depending on how I felt. This is an individual preference, but it seems to work well for many young adults with illnesses that are unpredictable in nature. Are there any organizations or services that can help me at college or when I get a job?Once you turn 18, you will be eligible to receive services from the Office of Vocational Rehabilitation (OVR). They help with career counseling for people looking for jobs who have illnesses or disabilities but they also help with college needs, as well. They provided me with monetary help for college books, transportation to college, and bought me a scooter and lift for the car to help me get around at work. They can help provide accommodations at colleges, such as communication devices, so that students can learn more effectively. Each state has its own OVR office. I get tired really easily from walking and the school I am interested in has a big college campus. Do you have any suggestions for making it easier to get around without tiring out?Fatigue and decreased stamina are issues that I currently struggle with, but weren’t as much of an issue in college as they are now. Now, through OVR, I have a scooter that I can use for long distances. OVR paid for this for me since it is a necessity for me to be able to work successfully. Similarly, if a scooter enables you to be successful in college because it saves you energy, then it may be something you would be eligible for. The thought of riding around the college campus in a scooter may not be considered cool in your mind, but if it allows you to succeed and saves you energy for paying attention in class or doing something fun later in the day, then it is worth inquiring about it. What if I have a scooter or a wheelchair but I am not sure how to navigate the campus with it in the snow?I haven’t used my scooter in the winter yet so I can’t offer many personal suggestions, although I do know of others who have physical disabilities who are in wheelchairs and have lived in the dorms in the winter. One student said that she gave the Office of Students with Disabilities a copy of her class schedule and in the winter the maintenance people would clear the paths that she would need to get to her early classes first so that she would be able to get there without too much trouble. She said that it was still hard, but she managed to be able to get around since the paths were usually cleared. I am on medications that decrease my immune system and make me more susceptible to infections. Should I ask for a private room in the dorms?Yes! Ask your doctor to write a note stating very specifically why it would be dangerous for you to have a roommate. If they have private rooms saved for upperclassmen, push for one of those. If your doctor can justify why you need a private room for the safety of your health, the school should make every effort to provide you with the necessary accommodations. I had my own room in college when typically people always had roommates. I get IV nutrition so in college I got 6 boxes of medical supplies every two weeks that needed to be stored. There was no way that I would have been able to fit all of my supplies in half of a room with me and the rest of my stuff, so they gave me a full room. We had to fight for it, though. Also, if you are in a wheelchair or a scooter, you can request a handicap- accessible room, which may be private because you will need more space to store the wheelchair or scooter. What if my school doesn’t offer note taking or other services in the classroom?Under the ADA, they are required to offer any necessary accommodations to help you succeed in the classroom. When I missed classes in college, I had a note from the Office of Students with Disabilities saying that I needed a note taker, but rarely used this note since I found that other students were really open to helping out. After a few weeks of being in college, you will get to know some of the other students and become friendly with some of them. These people are usually understanding when it comes to sharing notes due to absences. It also may help to know who the good note takers are in the class. Who gets good grades or who looks like they have neat notes? This is helpful when you aren’t there to take notes for yourself. Will I lose my health insurance if I don’t take classes full time or work full time?The insurance that I have has something called a handicapped-dependent status. For my insurance, if you inquire about it before the age of 19, they will keep the “handicapped child” on the parents’ health insurance indefinitely. Some insurance companies may go up to 22 so this may be worth asking about even if you are older. The way this has worked for me is that I was declared handicapped-dependent through my insurance when I was 18 and it didn’t matter how many classes I took in college or if I was working. Regardless of whether I was able to work or in school, the health insurance continued. Even now, I work very part time and my insurance is still under my mom’s name through the handicapped-dependent program and I am almost 27 years old. I don’t need to work full time to get the health insurance benefits since I already have them through this status. From my understanding, this is a lifetime program and I will always be covered under this current plan, which is under my mom’s name, until I hit the lifetime cap and then it can be transferred into my name. This has allowed me to take classes and work at my physical capability level and not have it dictated by insurance. Each insurance plan is different so this may be individual to each company but it is definitely worth fighting for if you are still young enough to qualify. If you call your insurance to ask about this, specifically ask about the handicapped dependent status qualifications. I want to have a part-time job during the summer but am not sure what kind of job I would be able to handle because of the stamina and pain issues I have that are associated with my illness.When thinking about applying for a part-time summer job, some questions to think about are: Have you done any type of volunteer work before or had a part time job in the past? What worked well for you? What kind of areas are you interested in majoring in college? Finding a job that would compliment your interests for your future, but also wouldn’t be too taxing on you, might be a good way to solidify the interests you have. Finding a volunteer position that you’re interested in is a good way to start. This way you could gain experience in an area you likes that’s within your capability level without the pressure to be an employee with added expectations. Focusing on what you can do instead of what your limits will help you be successful. What should I tell my employer during an interview or after I get a job?It is always good to be honest with employers about your limitations from the get-go. You don’t have to go into detail about your health problems, but if your illness affects your ability to do the job, then your employer needs to know this upfront. If you can do the job, but need some accommodations to help you do it well, then the employer also needs to know this when you go for the interview or get hired. Under the Americans with Disabilities Act (ADA), as long as you can perform the duties of the job, then it is the employer’s responsibility to make reasonable accommodations for you. Some people don’t like telling the employer during the interview about their health problems because they are afraid they won’t get the job if their employer knows about their limitations. Whether you tell the employer then or after he hires you is your choice, but in my experience, it will make your ability to work in that environment easier if you do this from the start rather than waiting until a health issue arises. Oftentimes, the employer appreciates honesty rather than being surprised later on. Do you have any final thoughts on how to choose a college?I would suggest sitting down with the Disability Office staff at any schools you are looking at and talking to them about what kind of accommodations you think you would need. Based on their responses, I would take that into serious consideration when choosing the school. Their actions are going to make your stay there a lot easier if they are more accommodating. When I started out at college, I went to a suburban campus of a large university. It was 30 minutes from home, which was far enough away that I could be independent but close enough that I could call my mom in an emergency. It was a smaller campus so it was pretty easy to get around there and since the school was smaller, they gave their students more individual help and attention. Sometimes starting out with a suburban campus of a larger school is helpful. Then, after the student is an upperclassman, he/she can transfer to the larger campus. The most important thing is to figure out what works for you, since each school, each student and each health problem is different. Thus, responses to each of these questions will vary depending on the student. But, the bottom line is to be persistent in getting the right kind of assistance for your individual needs. --- ### [Coping with Fears and Questions](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/children-with-mito/coping-with-fears-and-questions/) **Published:** September 23, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The toll of mito on a family can be psychological as well as physical. Just as the affected parent must adapt to his or her physical problems, so must the children of the family. Youngsters may worry, “Can Mommy still look after me?” or “Does Daddy still love me when he is always so tired?” It is particularly stressful for the child if a parent is hospitalized, wondering, “Will he die in there and never come back?” It may also be hard for the child to adjust to a parent using a cane/walker or wheelchair/scooter. My own personal experience with the latter is that children think these aids are like big toys and rather fun. Rules may have to be established about their use. A big fear of children of all ages can be the fear that they too might contract this disease. Unfortunately with Mito, it may be passed down to children through genes. This fear is probably always at the back of the parents’ minds. All of these worries and concerns need to be handled in an open way. Meeting the child’s needs as they are presented is important. Worries need to be addressed at the level of the child’s functioning. A complicated explanation will not soothe a 4-year old. Questions asked should be addressed in a straightforward manner without overly scaring a child. A child should not be overburdened with facts about the disease that no one can control. It may be beneficial for the entire family to have some kind of family counseling. Support groups for various family members can also be very helpful. If you know of another adult suffering from a similarly debilitating disease, letting the children of both families talk may be helpful. Last but not least, let us not forget the spouse of the one affected with Mito. It is on him or her that much of the pressure of the illness falls, as so often he or she is the one picking up the slack that the afflicted partner is unable to fulfill. This can be as physically draining as well as a psychologically daunting task to fulfill, and this fact needs to be appreciated by the Mito-involved parent. The unimpaired parent needs time out occasionally from all of the many responsibilities, if this is possible. Open communication between spouses remains very important. Both must feel comfortable in expressing their needs. Counseling might play a role here as well. It’s important for the whole family of a Mito sufferer to be involved in the care of the disease. However, make sure the disease does not become the center of your family life, so that there is time for some fun occasions as well. --- ### [Dealing with the Fatigue of Mito](https://www.mitoaction.org/day-to-day-with-mito/managing-your-energy/dealing-with-the-fatigue-of-mito/) **Published:** July 19, 2019 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The severe fatigue of mitochondrial disease can be one of the most difficult symptoms that people with mito suffer from. The biggest overall principle to follow in dealing with fatigue is to “think” energy conservation techniques in everything you do. Energy conservation means looking at your daily routines to find ways to reduce the amount of effort needed to perform certain tasks, eliminating other tasks, and building more rest throughout the day. Keep in mind not every technique will work for you. These are suggestions you can use and adapt to find the right fit for you. Energy can be thought of as money, remember to spend your energy “money” wisely, you only have so much! One hurdle to using these listed energy conservation strategies is the amount of effort it takes to put some new organizational systems in place. This brings up another principle in dealing with the fatigue of mito; Learning to accept offers of help from others and learning to delegate tasks. While easier said than done, it will really go a long way to improving the quality of your life, especially when you realize that spending your energy money doing some easily delegated tasks will leave you too fatigued to read to your child, spend quality time with a loved one or just read a book. ## General Guidelines for Dealing With Fatigue: ### Rearrange Your Environment - Keep frequently used items in a location where you will use them. This avoids having to carry them around or do extra walking to get them. - Replace existing heavy items with lighter one (plastic vs. glass). - Use good body mechanics – don’t carry equipment if you can push it. Slide, don’t lift, push, don’t pull. Maintain good posture. Bend at the knees, not the waist. Eliminate unnecessary motions. Use both hands when possible while carrying. Adjust work-spaces such as raising a tabletop to eliminate awkward positions. - Install long handles on faucets or doorknobs. - Consider moving your bed to the first floor to eliminate stair climbing. - Organize the kitchen for maximum efficiency. Place the most often used items on the lowest shelves. Make a cooking area having all pots and pans together close to the stove. Spices and utensils should also be as close to the cooking area as possible. Consult an occupational therapist to help personalize the ideas listed here and enlist a helper or two to rearrange your living environment. ### **Eliminate any Unnecessary Effort** - Sit rather than stand whenever possible, i.e.: when preparing food, washing dishes, when talking on the phone. - When dressing, sit, have your clothes at arm’s length, dressing the lower parts of your body first as this requires the most energy expenditure. Bring your feet up to you rather than bending down to them. Work slowly and methodically, resting when needed. Buy clothes that are easy to care for and put on. - Shower using a shower chair, remain sitting when shaving your legs instead of bending over, have a chair in the bathroom so you can sit while drying yourself. - Use adaptive equipment that is appropriate to your situation, i.e.: book holder, a jar opener, a reacher, text to speech software or hand-free headset for your phone. - Organize the method in which you work, repetition of the same methods will increase proficiency and save time and energy. - Soak your dishes before washing, let them air dry or consider using paper products. - Buy prepared foods and try to keep prepared healthy snacks available such as precooked hard-boiled eggs, cheese slices and fruit. - Shopping can be an exhausting activity so try to find a grocery store that accepts phone orders and delivers. A few large grocery chains have online ordering and delivering. If you go shopping, use electric carts or wheelchairs, which most large grocery stores make available. Other items are available from catalogs by mail, phone or the Internet. Take advantage of these effective alternative ways of shopping. Think of how many stores you can visit without leaving your chair! ### Plan Ahead - Pre-plan your activities and try to make a daily or weekly schedule. - Ask yourself a few questions: Is there too much to do on a single day? Are heavy tasks alternated with light ones? Are heavy tasks distributed throughout the week? Have I scheduled enough time to for activities with enough time between each one to rest? Rushing takes more energy! - Make fewer trips around the house; if you have stairs, organize your day so you minimize the need to climb them. - Cook in larger quantities and refrigerate or freeze extra portions. - Work rest breaks into activities as often as possible. Take a break before you get tired. - Try to plan some type of exercise into your weekly routine. Toned muscles require less energy to function. ### Prioritize - Eliminate or reduce tasks that aren’t that important you. - Remember to delegate tasks to family or friends who offer to help. - Consider hiring professionals, such as a cleaning service or lawn service, to cut down on your workload. - Decide what are the most important things in your life and spend your energy money on them. - Always listen to your body, know your limits and don’t let yourself become overtired. If you do overdo it, try not to be too hard on yourself. Walking the mito path is very challenging and learning how much activity is too much is sometimes determined by when we crash! The goal is to live a rich and full life with the least amount of mito crashes as possible. --- ### [Conserving Energy](https://www.mitoaction.org/day-to-day-with-mito/managing-your-energy/conserving-energy/) **Published:** September 23, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It is a good idea to try to follow the basic principles of energy conservation outlined in the energy conservation section. With that said, a few other things could help parents who have mito: ### Resting whenever possible is most important If children are still young and take naps, it is a good idea to nap when the child does or nap while older children are at school. Have your children watch a video or TV show for a certain period of “quiet time” for everyone. This requires a mind-set that overlooks the possible untidiness of the house! ### Pre-plan Try to schedule fun activities with your children in your highest energy periods, then quieter activities later in the day when you are more likely to be tired. When a parent has a chronic illness, it is important that he/she focus attention on what really matters — personal relationships, not a perfectly clean house. If the parent with Mito is still able to work outside of the home, it becomes important to prioritize time and family needs. If it’s possible to hire a house cleaning service, this is a wonderful saving of energy and time. If not, try to break down chores and assign different family members certain responsibilities according to his or her age. Even a toddler would be pleased to run and get a simple object for a parent and save them a few steps. One of the most time-consuming aspects of modern child rearing is taking children to and from various extracurricular activities. With Mito as an extra unwelcome member of the family, it is important to limit each child to only a few activities. This helps to reduce the total driving/activity time outside the home. It is helpful to arrange a car pool if possible with other parents of children in the same activities to reduce total driving time. If a friend offers to do an errand for you, accept their kindness. Never refuse any offers for help! As a person with Mito, you must swallow your pride and take anyone up on his or her offers. And it is very important to always remember, “If you don’t take care of yourself, you can’t take care of anyone else, either!” Using easy-to-prepare meals is another way to save more energy that can be devoted to the family. Since people with Mito may have GI motility problems, meal preparation might be difficult from a nausea perspective. Try to prepare foods that are nutritious for your children and spouse but can also be tolerated by you “the Mito parent,” so you don’t have to prepare something special for yourself. --- ### [Coping with Your Child's Diaganosis](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/children-with-mito/coping-with-your-childs-diaganosis/) **Published:** October 16, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > *The doctors tell me my son has mitochondrial disease. They say it’s a progressive, incurable disease, but they can’t tell me what will happen next or when it will happen or even if he’s going to live to be a grown-up. How do I cope?* The diagnosis of mitochondrial disease in your child or children can make you feel like your world has been turned upside down. The foundation on which you stand may seem torn from under you. Although no parent has any guarantee their child will grow up and live a “normal” life, most parents move through life with that assumption. The diagnosis of mitochondrial disease challenges the most basic assumptions of parenthood. When your child is first diagnosed, you are likely to feel mixed emotions. It is normal to feel grief, sadness, anger, anxiety, and even relief at having a name to put to your child s symptoms. These emotions don’t typically end a few weeks or months after the diagnosis. There are periods of relative stability in which you will adjust to your child’s new normal (i.e. feeding tube, wheelchair). Yet, when your child develops a new symptom or a visit to a doctor brings more disturbing information, you are likely to experience another grief reaction. It will take time to physically and emotionally adjust to the diagnosis of mitochondrial disease. Be gentle with yourself. Some suggestions: 1. Recognize how you feel (this can sometimes be difficult!) 2. Understand how you cope; remember you and your spouse may cope very differently. 3. Find a few people with whom you can speak about how you feel. Those who can listen may not be the ones you expect. You may have to search for the people that can truly listen to you talk about the painful and joyful feelings that come with parenting a child with mito. Talk to them, write to them getting the feelings out through words can be immensely helpful! Research consistently demonstrates that parents of children with chronic illness cope better when they have considerable social and emotional support. 4. Seek group or individual therapy. 5. Take care of your own health with proper nutrition, exercise, and fun (yes, fun!) 6. Be an active member of your child’s medical team. Ask questions, gather information. Make informed decisions. This can reduce your feelings of powerlessness and lack of control. 7. Get involved with non-profit organizations directly benefiting those with mitochondrial disease. This is also helpful in reducing feelings of helplessness. 8. Lastly, realistic hope is important. Although the unknown of mitochondrial disease can create anxiety in parents, it also contains hope. The course of mitochondrial disease is almost always impossible to predict and, in that, lies enormous hope for the future of all our children living with mitochondrial disease. Hold tight to that hope during times of worry and fear. Children are incredibly resilient and positive. Let yourself learn from your child. Immerse yourself in the moments that bring joy to you and your child. *Content provided by Ann Reckling* --- ### [Transition to Adulthood](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/teens-with-mito/transition-to-adulthood/) **Published:** August 20, 2018 **Author:** mitoaction --- ### [Adult Patients and False Allegations](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/adults-with-mito/adult-patients-and-false-allegations/) **Published:** September 24, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") For adult patients with mitochondrial disease, it is a nearly universal experience that a medical provider has doubted the physical nature of their symptoms at some point in their medical journey. Adult patients frequently are characterized as faking symptoms, seeking attention, or otherwise suffering from psychological or psychiatric problems, which is extremely frustrating to patients with pain and other significant physical symptoms. Patients often go for many years without proper medical treatments while having psychological therapies suggested to them that do not alleviate the underlying physical issues. Below are suggestions collected from several adult patients and caregivers regarding how to best address allegations that their symptoms are not “real” should they arise. - **Learn to advocate for yourself!** MitoAction has concrete suggestions on how to improve communication with medical team members here. In addition, there are several podcasts on the subject of advocating effectively in a medical setting which are listed at the bottom of this page. - **Avoid situations that may lead to negative care consequences** such as oversharing personal care information or difficult symptoms on social media, where it can be easily misinterpreted by friends, family, and even care providers. - **Educate your primary care physician and non-Mito specialists** by providing a few relevant printed pages from the MitoAction website or share a copy of our [Patient Kit](https://www.mitoaction.org/3d-flip-book/new-patient-kit/). - **Share concerns** about having your needs met by medical staff with a trusted family member or friend before an emergency occurs. Have a written summary of individual preferences and needs to use during an emergency. For specific guidance on such advance preparations, please click here. - **Call the doctor early** on in an illness to seek treatment options that may avoid an emergency room visit. ER physicians are less likely to be familiar with complex, rare medical conditions. However, ER visits are necessary at times, even when the best medical precautions are taken, so be sure to use good judgment and go to the ER to avoid a crisis. If heading to the ER, ask a trusted doctor — ideally, your primary care physician — to call ahead to the ER and alert the staff to your needs. Bring an ER Protocol Letter that has been tailored to your specific needs by your mitochondrial disease specialist or another physician on your care team. Sample letters may be found here. - **Build a medical team experienced with complex patients**, preferably a Mito-knowledgeable team. If possible, have a support person accompany you to physician appointments to take notes. - **Report all symptoms** as honestly and accurately as possible. To help with symptom reporting, consider using the [MitoAction MyMito App](https://www.mitoaction.org/mitoaction_mobile/) platform to track your day-to-day journey with mito. - **Have a supply of cards or flyers** in your purse or wallet that refer to a mitochondrial disease patient support or advocacy organization. This may provide a quick reference for busy physicians and other disciplines involved in your care. Brochures may be requested from MitoAction by email info@mitoaction.org or calling us at 888-648-6228. - Build a **support system** to share experiences and offer advice in difficult situations. - Family members and friends; - MitoAction Weekly Support Groups – Weekly meeting on Fridays at noon EST. Toll-free call: 1-866-414-2828, enter participant code 017921#; - MitoAction’s Mito411 hotline – e-mail mito411@mitoaction.org or call 1-888-MITO-411 (648-6411); - MitoAction’s closed Facebook discussion group One of the most important things you can do is keep an **open dialog with your clinicians and care team**. This step can be complicated, but a few suggestions that encourage team communication include the following: - Establish a strong working relationship with primary care doctor. He/she should be the quarterback of care. Referrals, sick visits, and refills for routine medications should come from the primary care doctor, and other specialists should know how to get in touch with him or her. - As much as possible, refrain from communicating ideas and diagnoses between your doctors as such communication can be a source of miscommunication, even raising suspicions of exaggeration of actual medical facts. Call ahead to make sure clinic notes from past important appointments have been shared between specialists, or obtain copies of your own records and keep them in a binder to share with specialists at appointments. - If unhappy with your medical team, seek out new physicians that better fit your medical needs and personality. Remember, the patient should feel comfortable with each physician and has the right to expect consideration and respect from all parties when making care decisions. If “firing” multiple doctors, seek insight from a third party to assess if communication style is creating difficulties in care. - Avoid hostility, anger and making demands of medical professionals which creates frustration for everyone, rarely leading to positive medical interactions. Learn to be patient and cooperative yet assertive about your needs and expectations. Be open to changes and trialing new treatments in medical care. Even if a recommended change or treatment did not work in the past, consider retrying it. Bodies change over time and a plan that did not work well a few years ago may work if significant time has passed or medical circumstances have changed. Seek second opinions for major medical procedures like ports and feeding tubes. If a physician suggests that anxiety or depression may be impacting overall health, consider this suggestion with an open mind. Whether due to the chronic stress of having a rare disease or actual mitochondrial dysregulation in the brain, a psychiatric component of Mito may exist that might need to be addressed and treated. For more information about the relationship between Mito and psychiatric issues, please refer to Dr. Andrew Nierenberg’s MitoAction podcast on this topic. Psychiatric consults may be ordered when a patient is hospitalized and symptoms are not well understood. Do not feel discouraged, but rather approach the consult honestly, exploring possible psychiatric components of the presentation with the psychiatry team. Refusing the consult also may raise suspicion that the medical symptoms may indicate attention-seeking behavior. Cooperation demonstrates an openness to accept help for stressful life circumstances, and can actually lead to psychiatrists defending the validity of medical problems to other clinicians. If an in-patient psychiatric evaluation is recommended, it is often possible to call upon others who might have a different perspective from the requesting doctor. Here are some options: - Call support people to validate the patient’s perspective; - Notify PCP, mitochondrial disease specialist, and any other specialist who would be supportive of the patient’s concerns; - Contact any counselors, therapists, or psychiatrists with an established relationship with the patient. The professional opinion of an existing mental health team can calm fears regarding emergency psychiatric care, which is why it is often beneficial to include such professionals on the medical team of a complex patient; - If there is strong disagreement about the need for an in-patient psychiatric evaluation, notify the hospital Ethics Committee and/or Ombudsman’s office about your situation and ask for a meeting as soon as possible. --- ### [Advocating for Yourself and Your Child](https://www.mitoaction.org/day-to-day-with-mito/advocating-for-yourself-and-your-child/) **Published:** July 19, 2019 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") > “I wish the doctors could figure out what’s wrong with me or my child. We have been feeling sick for so long and nobody seems to know what to do. How do we, as patients, learn to speak up and advocate for ourselves in these situations?” What is the best way to learn how to stand up for your needs or those of your child? Doctors can be intimidating in many situations. You need to be prepared with the knowledge necessary to keep yourself as healthy as possible. This includes basic knowledge of mitochondrial disease, what to do in emergency situations, and whom to contact when a problem arises. Here are some steps to take so you can advocate for yourself and your child effectively. 1. **Educate yourself**. This is one of the best ways to become your own best advocate. Read information on mitochondrial disease. Ask questions and become informed about treatments and ways to improve your care. When a doctor doesn’t know much about mitochondrial disease, take a medical article or a brochure on mitochondrial disease with you to the appointment so that he or she can be better informed. 2. **Educate your primary care physician (PCP) or pediatrician**. This doctor should be the central person to all of your medical care. Since mitochondrial disease is so complex and varies in presentation, your PCP is the person to start with. This doctor should be the “medical home” for you or your child. This means that ideally this doctor should be coordinating care between all of the specialists that you or your child sees. He or she should be your advocate and should understand the whole picture of what is going on with you/your child. Getting a doctor to understand mitochondrial disease and advocate for you is important, especially if you aren’t well enough to advocate for yourself or you are feeling overwhelmed with all the care that is involved. 3. **Write down questions and take notes during appointments**. This helps many people stay on target with the questions they want to ask during an appointment. It is easy to forget questions or become overwhelmed during an appointment but bringing a notepad with questions may help you stay focused on the most important issues. 4. **Bring someone with you to appointments**. Doctors’ appointments can be overwhelming. Often times, patients are soaking up a lot of information when they see a new specialist. It can be helpful to bring a spouse or a friend with you to help take notes or remember questions for you. It can also be helpful to have someone with you for support. It can be hard to go into an appointment when you don’t feel especially well or when your child is really sick. Having someone for support and to help you interpret information can be valuable. 5. **Find a mitochondrial specialist**. This doctor can guide you and your other doctors in the treatment of your particular symptoms. Finding a mitochondrial specialist is helpful in figuring out a diagnosis and learning certain tactics for living with mitochondrial disease. 6. **Request copies of your medical records**. Keeping copies of all of your records and lab reports can help all of your doctors see the full picture of your health. If you are going to a new specialist who has never met you, it will help to have those records available. This will make it easier for your doctors to understand what is going on with your health situation. 7. **Develop action plans for emergency situations**. This is extremely important in minimizing life threatening complications from mitochondrial disease. Make a plan with your primary care physician or mitochondrial specialist when you or your child is well so that you know what needs to be done in an emergency. For example, should certain bloodwork be done or should IV fluids containing glucose be started during an acute illness? Some mitochondrial specialists will write up a plan specifically for you or your child to be given to emergency department personnel. 8. **Keep records of pertinent medical records**, medications, primary physician contact information, lab sheets, articles about mitochondrial disease, and emergency protocols can be helpful, too. When an emergency arises, it’s easy to grab the binder on the way out the door. The [MitoAction MyMito App](https://www.mitoaction.org/mitoaction_mobile/) is a great tool to help you keep things in order and to track your day-to-day. 9. **Request case management services** from your health insurer and/or state department of public health. They can assist as advocates for services and healthcare. They can also advocate for you when medications or medical equipment isn’t covered, but should be covered. 10. **Find a family representative**. Ask your doctor or case manager to put you in contact with another patient or family in the same situation. This is a very powerful tool. Some insurance companies and the Department of Public Health have parents on call to assist new patients/families. 11. **If necessary, find a new doctor**. If you have tried many of the above tactics and you still feel like you aren’t getting anywhere with your doctor then it may be time to find a new physician. Some doctors are too busy or may not have an interest in learning about mitochondrial disorders. If this is the case, it may be time to move on to someone new who can look at you from a different perspective. 12. **Join support groups**. MitoAction offers [weekly support groups](https://www.mitoaction.org/programs-support/mitochondrial-disease-support/weekly-support-calls/) each Friday or feel free to contact us through the [Mito411](https://www.mitoaction.org/resources/mito411/) helpline at (888) MITO-411. Lastly, you’re not alone! It seems to take most people a long time to get a diagnosis of mitochondrial disease. The diagnosis is difficult to obtain because the disease has so many different presentations. No two people with mitochondrial disease are alike. Primary care physicians often don•t have enough knowledge to make this diagnosis, so it is up to us to educate ourselves and find the best care for ourselves and our children. --- ### [Mito Warrior Wednesday](https://www.mitoaction.org/day-to-day-with-mito/mito-warrior-wednesday/) **Published:** January 17, 2020 **Author:** Jeannie --- ### [Shop](https://www.mitoaction.org/shop/) **Published:** November 12, 2020 **Author:** wpengine --- ### [Heat Intolerance](https://www.mitoaction.org/day-to-day-with-mito/heat-intolerance/) **Published:** September 23, 2019 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ### Managing Very Warm Weather Traveling in the summer or going to a hot climate can be challenging for some people with mitochondrial disorders. There are several suggestions that may help to keep you cool. Always make sure you are well hydrated. In hotter climates, your body will sweat more and you can lose fluids very quickly. This can make you dizzy and drop your blood pressure more quickly. Stay ahead of the dehydration and carry around a water bottle or sports drink to make sure you/ your child doesn’t lose too many electrolytes and fluids. If you have a central line (port or a broviac) for IV hydration or a g-tube, it may be wise to ask your doctor if you can do an extra bolus of fluid on days that will be spent outside in the heat. Prevention is key when keeping dehydration away! If you are unsure about whether you are dehydrated and need more fluids, always check with your doctor. Signs of dehydration can include: thirst, dry lips, dry mouth, flushed skin, fatigue, irritability, headache, dark urine, decreased urine output. Severe dehydration can include: rapid breathing, rapid and weak pulse, low blood pressure, dizziness, fainting, high fever, inability to pee or cry tears, disinterest in drinking fluid. This degree of dehydration requires medical attention. If you will be out in the heat for any length of time, make sure there is air conditioning or shade within a short distance of where you will be. It can be dangerous for some people with Mito to be out in the heat for prolonged periods of time and can cause the body temperature to rise to high levels. Access to air conditioning, fans, and shade are necessary for people to stay cool and for body temperature to remain normal. If you will be at a beach, rent a beach umbrella or make sure there is shade from a nearby tree. ### Carry around a spritzer fan/water bottle combination. You can buy these at amusement parks, beaches, or other stores like Wal-Mart. Fill up the water bottle with ice water before going out and use it to cool down. Kids especially like this on hot days and we found ourselves using it even for the healthy kids and adults because it cooled everyone down. The fan can be helpful as well. ### Jump in a pool or take a swim in the ocean. These are great ways of cooling down and can be fun too! Take some ice packs with you and use them to cool down your body. (Be careful, regular ice packs can cause frostbite if left in direct contact with the skin. The very young, very old, and anyone with neuropathy or circulation problems are at an even higher risk.) You can also buy a [cooling vest,](https://www.mitoaction.org/keeping-your-cool-cooling-vest-types/) which is a vest that either works by holding in moisture and slowly evaporating, or a vest with special ice packs built into the sides. These vests can be used by people of any age or size, many companies will create custom vests for people with special situations. Special vests can be made to accommodate ostomies, body braces, modified cool pack positioning to accommodate wheelchair seating or prolonged bedrest, and more. For in-depth information about different types of cooling vests as well as potential sources of financial assistance, be sure to visit. You and/your child may be able to get a cooling vest for free! **Wear sunblock and bring along a hat and sunglasses!** --- ## Bios ### [Mary Kay Koenig, MD](https://www.mitoaction.org/bios/dr-mary-kay-koenig/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Mary Kay Koenig, a pediatric neurologist at Children’s Memorial Hermann Hospital and tenured professor in the Department of Pediatrics, Division of Child and Adolescent Neurology, at McGovern Medical School, is a member of the American Academy of Pediatrics, the American Academy of Neurology, and the Child Neurology Society. She is an officer in The Mitochondrial Medicine Society and board member of the Tuberous Sclerosis Alliance. Dr. Koenig’s research interests are focused on clinical studies related to mitochondrial disease, neuro-metabolic disorders, tuberous sclerosis complex, and other neuro-genetic disorders. --- ### [Michael Green](https://www.mitoaction.org/bios/michael-green/) **Published:** July 8, 2026 **Author:** Michael Green **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Michael is the Development Manager at MitoAction and is dedicated to serving individuals and families living with mitochondrial disease, ensuring they have access to the programs, resources, and support they deserve. Alongside the CEO, Michael stewards fundraising efforts, partnerships, and signature programs that form the foundation allowing MitoAction to remain fully present and responsive to the people and communities depending on the organization. “I believe that every person affected by mitochondrial disease deserves to know that MitoAction is in their corner. If you are a donor, partner, or organization that cares about this community, I would be honored to explore how we might work together toward something truly meaningful.” Contact Michael at . **Bio Types:** Staff --- ### [Kira Mann](https://www.mitoaction.org/bios/kira-mann/) **Published:** October 11, 2023 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Kira serves as CEO of MitoAction and champions the growth of the programs and services offered by MitoAction. Her priority is to ensure that each and every person affected by mitochondrial disease knows they are not alone and that the MitoAction team will be here every step of their journey. Kira is committed to stewarding key funding opportunities, strengthening the organization’s business development and governance and working with the community to increase MitoAction’s national impact and presence in the areas of aware- ness, education and advocacy. “I am honored to lead this incredible team who works tirelessly each and every day on behalf of the amazing community we serve. I love hearing from our families, and I welcome you to reach out, share your story and help ensure that MitoAction is doing everything we can to pro- vide the support and services that are most meaningful to you.” Contact Kira at or call 248-797-2399. **Bio Types:** Staff --- ### [Sydney Watkins](https://www.mitoaction.org/bios/emily-grandahl/) **Published:** October 23, 2023 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Sydney joined the MitoAction team as Marketing Coordinator in May 2026. She manages MitoAction’s digital communications, including social media, email newsletters, website content, fundraising campaigns, and event promotions. A recent graduate of The University of Alabama with a degree in Public Relations, Sydney is passionate about using storytelling and digital media to connect communities and raise awareness. Through her work, she strives to keep patients, families, caregivers, and supporters informed, engaged, and connected to MitoAction’s programs, events, and resources. “I am honored to be part of the MitoAction team and this incredible community. Every day, I am inspired by the strength of the families we serve, and I’m grateful for the opportunity to help share their stories and support MitoAction’s mission.” Contact Sydney at . **Bio Types:** Staff --- ### [Stephanie Harry](https://www.mitoaction.org/bios/stephanie-harry/) **Published:** October 11, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Stephanie’s son was diagnosed in 2008 with LCHAD deficiency. She spent her son’s early years educating herself through research, journal articles, work groups, and clinicians. She worked alongside her son’s dietitian to publish a children’s book called “My Special Body” geared toward educating young children with LC-FAODs. She is passionate about education, mentorship, and advocacy. In 2022 Stephanie joined the MitoAction team to support the greater mitochondrial community. “I am so excited to be a part of the MitoAction team! My goal is to always create a safe inquisitive space where people feel loved, listened to and have continued access to meaningful resources. I look forward to connecting with each family and patient, and feel honored to walk this journey with you!” Contact Stephanie at . **Bio Types:** Staff --- ### [Pranav Ponnaluri, MS, MBA](https://www.mitoaction.org/bios/pranav-ponnaluri-ms-mba/) **Published:** May 26, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") He brings 15 years of experience supporting pharmaceutical, biotechnology, and medical device organizations with portfolio strategy, product launches, clinical development planning, fundraising, and partnerships. Pranav has worked across a breadth of therapy areas and geographies, acquiring deep expertise translating complex science into actionable commercial strategies. Pranav holds an MBA from Columbia Business School, an MS in Biotechnology from Johns Hopkins University, and a BS in Biotechnology from Rutgers University. --- ### [Robert Harper, IVDS, Bioscience Founder and CEO](https://www.mitoaction.org/bios/robert-harper-ivds-bioscience-founder-and-ceo/) **Published:** May 26, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Experienced redox chemist and diagnostics entrepreneur with more than 30 years of leadership in translational research and development. Specializing in: in situ blood separation, enzymatic assay design, and colorimetric redox chemistry, he has guided cross-functional teams in transforming complex scientific concepts into practical, commercially viable point-of-care solutions. As founder, of In Vitro Diagnostic Solutions (IVDS), Robert leads the development and commercialization of intuitive, accurate, and low-cost diagnostic platforms for patients with inborn errors of metabolism. IVDS technologies integrate onboard instructions and mobile connectivity to support longitudinal monitoring and remote data access. The Onsight™ Meter platform is designed to support single-, dual-, and triple-analyte cartridges, with built-in in situ separation for plasma and urine biomarker testing. --- ### [Sarah Grünert, MD](https://www.mitoaction.org/bios/sarah-grunert-md/) **Published:** May 26, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Prof. Dr. Sarah Grünert is a pediatric metabolic specialist working at the University Children’s Hospital Freiburg and associate professor of the Medical Faculty of the University Freiburg. After completing her medical studies in Freiburg, Innsbruck, London and Oxford, she performed her fellowship in Pediatrics at the University Medical Centre in Freiburg, Germany. In 2011, she completed a postdoctoral research fellowship at the University Children’s Hospital Zürich, Switzerland. Her main clinical and research interests are fatty acid oxidation defects, hepatic glycogen storage diseases, and disorders of ketone body metabolism. She also is subnetwork coordinator for these diseases in the European Reference Network for Hereditary Metabolic Disorders (MetabERN). **Bio Types:** Speaker --- ### [Brian Weber, DPT, CFMT, FFMT, FAFS, FAAOMPT](https://www.mitoaction.org/bios/brian-weber-dpt-cfmt-ffmt-fafs-faaompt/) **Published:** May 26, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Brian Weber, DPT, CFMT, FFMT, FAFS, FAAOMPT is the founder of KINECIO Physical Therapy in Woodbury, Minnesota, where he specializes in second opinions and complex case management. Dr. Weber received his Doctorate in Physical Therapy from the University of Iowa and completed fellowships in Functional Manual Therapy through the Institute of Physical Art and Applied Functional Science through the Gray Institute. His work focuses on integrating advanced manual therapy, movement science, and whole-body clinical reasoning to improve movement, performance, and quality of life. **Bio Types:** Speaker --- ### [Chen Zhang](https://www.mitoaction.org/bios/chen-zhang/) **Published:** May 26, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Chen Zhang received her Master’s degree in Biochemistry and Molecular Biology from the University of Chinese Academy of Sciences. Prior to joining Aarhus University, she worked as a research assistant at Qilu Hospital, China, where her research focused on mitochondrial diseases. Chen Zhang is currently a PhD student in the Department of Clinical Medicine at Aarhus University, Denmark. Her research centers on developing and applying the “LCHADD PN-in-a-dish” model in combination with biochemical analyses and multi-omics approaches to investigate fatty acid oxidation-related neuropathy. Through this work, she aims to advance the understanding of peripheral neuropathy in LCHADD and related metabolic disorders, including diabetes, and to support the development of future therapeutic strategies. **Bio Types:** Speaker --- ### [Lauren O'Grady, MS, CGC](https://www.mitoaction.org/bios/lauren-ogrady-ms-cgc/) **Published:** May 26, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Lauren O’Grady, MS, CGC is a senior genetic counselor in the medical genetics division at Massachusetts General Hospital (MGH) where she has practiced since 2015. She specializes in biochemical genetics and newborn screening. She works closely with patients of all ages with inborn errors of metabolism. **Bio Types:** Speaker --- ### [Pamela Tucker, DPT, PT](https://www.mitoaction.org/bios/pamela-tucker/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Pamela Tucker, PT, DPT, is a physical therapist at Bethany Children’s Health Center, where she practices on the medical rehabilitation unit, specializing in the care of medically complex pediatric patients. She earned her undergraduate degree from Duke University and her doctorate in Physical Therapy from Franklin Pierce University. Dr. Tucker brings a diverse clinical background spanning acute care, inpatient rehabilitation, and outpatient physical therapy, with experience treating infant, pediatric, and adult populations. Her clinical expertise focuses on neurorehabilitation, functional mobility, and optimizing participation and independence across the continuum of care. A recognized national and international speaker, Dr. Tucker has contributed to the advancement of rehabilitation practice through multiple peer-reviewed publications and professional presentations. She is committed to translating evidence into practice and advancing interdisciplinary care for individuals with complex medical and neurological conditions. Her research interests include physical therapy interventions for children with inherited metabolic disorders, aquatic physical therapy, concussion management, and robotic-assisted mobility training. Dr. Tucker is currently working on a physical therapy protocol to recover from rhabdomyolysis. **Bio Types:** Speaker --- ### [Melanie Gillingham, PhD, RD, LD](https://www.mitoaction.org/bios/dr-melanie-gillingham/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Melanie Gillingham’s research in the Department of Molecular and Medical Genetics has focused on various novel therapies for fatty acid oxidation disorders. For 20 years, Dr. Gillingham and her colleagues have conducted clinical trials in subjects with disorders in the fatty acid oxidation pathway. She has examined the effects of medium chain triglycerides (MCT) supplements prior to exercise on exercise performance among subjects with long-chain 3-hydroxyacyl-CoA dehydrogenase (LCHAD) deficiency receiving the Emmanuel Shapira Award for best paper in Molecular Genetics and Metabolism. The Gillingham lab has evaluated the effects of increased dietary protein on metabolic control and energy balance in subjects with LCHAD, carnitine palmitoyltransferase 2 (CPT-2) and very long-chain acylCoA dehydrogenase (VLCAD) deficiencies. In a separate study, Dr. Gillingham conducted supervised metabolic fasting studies in young children with a polymorphism of the CPT1A gene to determine if they have an altered fasting response similar to other fatty acid oxidation disorders. In 2014, a group of FAO researchers, under the leadership of Dr. Jerry Vockley, founded the International Network for Fatty Acid Oxidation Research and Management (INFORM), an international group working for the advancement of medical and nutrition therapies for fatty acid oxidation disorders ([www.informnetwork.org](http://www.informnetwork.org/)). Dr. Gillingham participates on the organizing committee of INFORM. Dr. Vockley and Dr. Gillingham completed a randomized trial to examine the effects of an odd-chain fatty acid supplement, triheptanion, on myopathy and cardiac function of patients with long-chain fatty acid oxidation disorders. This is the largest randomized controlled trial conducted in these disorders to date and was recently selected for the Garrod award by the Society for the Study of Inborn Errors of Metabolism (SSIEM). Dr. Gillingham has also conducted a series of studies examining the etiology of retinopathy in LCHAD and the role of diet in the progression of vision loss. Dr. Gillingham is currently conducting a larger natural history study of LCHAD retinopathy. **Bio Types:** Speaker --- ### [Jessica Gold, MD, PhD](https://www.mitoaction.org/bios/jessica-gold-md-phd/) **Published:** February 28, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Jessica Gold is a medical geneticist trained in pediatrics and internal medicine with a fellowship at Children’s Hospital of Philadelphia. She currently practices at Northwell Health in NY. Both her clinical work and research is dedicated to helping adolescents and young adults with inherited metabolic disorders prepare for adulthood. For many young people, puberty and reproductive health are important milestones in emerging adulthood. Yet, clinicians lack information on these topics for people with FAODs, which impacts their ability to provide guidance. Dr. Gold is embarking on a project that is the first step in learning how people with FAODs approach puberty and reproductive health. **Bio Types:** Speaker --- ### [Jerry Vockley, MD, PhD, FACMG](https://www.mitoaction.org/bios/dr-jerry-vockley/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Vockley received his undergraduate degree at Carnegie-Mellon University in Pittsburgh, Pennsylvania, and received his MD and PhD degrees in Medicine and Genetics from the University of Pennsylvania School of Medicine in Philadelphia, Pennsylvania. He completed his pediatric residency at the Denver Children’s Hospital, Denver, Colorado, and his postdoctoral fellowship in Human Genetic and Pediatrics at Yale University School of Medicine in New Haven, Connecticut. Before assuming his current position in Pittsburgh, Dr. Vockley was Chair of Medical Genetics in the Mayo Clinic School of Medicine. Dr. Vockley is internationally recognized as a leader in the field of inborn errors of metabolism. His current research focuses on mitochondrial energy metabolism, novel therapies for disorders of fatty acid oxidation and amino acid metabolism, and population genetics of the Plain communities in the United States. He has published over 400 peer reviewed scholarly articles and is the principal or Co-investigator on multiple NIH grants. Dr. Vockley also has an active clinical research program and participates in and consults on multiple gene therapy trials. Dr. Vockley has served on numerous national and international scientific boards including the Advisory Committee (to the Secretary of Health and Human Services) on Heritable Disorders in Newborns and Children where he was chair of the technology committee. He has been elected as a Fellow/Member of the American Association for the Advancement of Science, the Association of American Physicians, and the American Society for Clinical Investigation. Dr. Vockley is a Founding Fellow of the American College of Medical Genetics and Genomics, and currently serves on its board of directors. He is co-founder and co-chair of the International Network on Fatty Acid Oxidation Research and Therapy (INFORM). He has served as chair of the Pennsylvania State Newborn Screening Advisory Committee and is a past president of the Society for the Inherited Metabolic Disorders (SIMD). He is co-founder and editor of the SIMD North American Metabolic Academy. He provides support for numerous family advocacy groups including MitoAction, the United Mitochondrial Disease Foundation, the National PKU Association, and the Organic Acidemia Association. He has received the National Organization of Rare Diseases Scientific and Medical Trailblazer Rare Impact Award (2025) The Organic Acidemia Association Award of Excellence (2021), and the March of Dimes Champion for Babies Award (2015). **Bio Types:** Speaker --- ### [Georgianne Arnold, MD, Phd](https://www.mitoaction.org/bios/dr-georgianne-arnold/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Arnold graduated from Indiana University with degrees in biology and chemistry, and has a Masters degree in Medical Genetics from Indiana University-Purdue University at Indianapolis. She graduated from medical school from Upstate Medical University, and completed a residency in Pediatrics at Northwestern University. Her genetics training was at the University of Colorado and she is boarded in Clinical Biochemical Genetics and Clinical Genetics. Dr. Arnold was Clinical Director and most recently Clinical Research Director at the University of Pittsburgh. She is an Emeritus Professor, and a consultant with VMP Genetics. Dr. Arnold is the past president of the Society for Inherited Metabolic Disorders, and recipient of the Shapira award for the best member’s paper in Molecular Genetics and Metabolism. She has a long-standing interest in fatty acid oxidation disorders, working with Dr. Vockley for 13 years. **Bio Types:** Speaker --- ### [Dwight Koeberl, MD, PhD](https://www.mitoaction.org/bios/dwight-koeberl-md-phd/) **Published:** April 24, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Koeberl attended Carleton College, and then Mayo Medical School and Graduate School, before moving to UCSF for his pediatrics residency. He then completed fellowship training in Clinical and Biochemical Genetics at the University of Washington, before joining the Division of Medical Genetics in the Department of Pediatrics at Duke University in 1999. He serves as Medical Director for the Pediatrics Biochemical Genetics Laboratory and sees patients in the Metabolic Clinic. His research has focused on the development of new therapy for inherited metabolic disorders, including glycogen storage disease type Ia and Pompe disease. He initiated a clinical trial of AAV8 gene therapy for Pompe disease that is ongoing. His laboratory is currently developing genetic therapies for trifunctional protein deficiency and LCHAD deficiency. **Bio Types:** Speaker --- ### [Daniela Karall, MD, IBCLC](https://www.mitoaction.org/bios/daniela-karall-md-ibclc/) **Published:** April 24, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Besides being an active member of INFORM Network, Professor Karall is responsible for inherited metabolic disorders in her current position as a Consultant to the Department for Child and Adolescent Medicine at Medical University of Innsbruck. FAOD dietary research as well as other treatment options, such as anaplerotic therapies, are her primary areas of focus. Professor Karall’s training included neuropediatrics and neonatology / pediatric intensive care, and she is an International board-certified Lactation Consultant. **Bio Types:** Speaker --- ### [Amanda Pritchard, MD](https://www.mitoaction.org/bios/amanda-pritchard/) **Published:** January 25, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Amanda Barone Pritchard is an Associate Professor of Pediatrics at University of Michigan Health in the division of Pediatric Genetics, Metabolism, and Genomic Medicine. Dr. Pritchard attended the University of Pittsburgh School of Medicine before completing Pediatric Residency at Lurie Children’s Hospital in Chicago. She then trained in Medical Genetics and Genomics and completed a Medical Biochemical Genetics fellowship at the Children’s Hospital of Philadelphia. She has been involved in several clinical trials for inborn errors of metabolism and aids in coordination of follow-up for abnormal newborn screens. Dr. Pritchard serves as Program Director for the Medical Biochemical Genetics Fellowship at the University of Michigan. **Bio Types:** Speaker --- ### [Bryan R. Cohen, BSN, RN](https://www.mitoaction.org/bios/bryan-r-cohen-bsn-rn/) **Published:** May 13, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Bryan R. Cohen, BSN, RN is the Clinical Nurse Manager at Chemistry Rx Compounding and Specialty Pharmacy, where he has worked for 5 years. He manages a team of nurses who coordinate with providers on the insurance coverage process for and educate patients and families on compounded medications. Prior to entering the compounding world, his experience was on the opposite side of the pharmaceutical industry, answering calls for manufacturers about their commercially available medications. Outside of work, he is a songwriter/composer and lives in Abington, PA with his two cats. --- ### [Jonathan Mordis, CEO](https://www.mitoaction.org/bios/jonathan-mordis-ceo/) **Published:** May 13, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Jonathan Mordis is CEO of the Chemistry RX platform, which includes four 503A compounding pharmacies throughout the USA. Jonathan is a 3rd generation pharmacist who has practiced in many different aspects of pharmacy throughout his career. In 2011, he became immersed in compounding pharmacy services after witnessing the struggles many patients experienced when they suffered from rare and debilitating conditions, and those for which commercially available products did not provide adequate therapies for. He joined Chemistry RX in 2022 as COO and moved into the CEO role later that year. His pharmacy knowledge includes clinical patient care, pharmacy operations, and provider and institutional hospital business development. Jonathan brings his mission of “no patient left behind” to every organization he has ever been a part of. This mission allows him to build teams that provide superior benefit to critically ill patients and allows these patients to not be burdened with the logistics and availability of the best treatments for their conditions. In his free time, he enjoys exercising, the outdoors, and spending time with his 3 kids. --- ### [Houry Lepedjian](https://www.mitoaction.org/bios/houry-lepedjian/) **Published:** May 13, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Houry Lepedjian, our VP of Operations, is a trilingual Pharm D, who has been with Chemistry Rx since 2016. Houry began her tenure as an intern and then a staff pharmacist, where she became passionate about servicing rare disease patients and patients suffering from chronic debilitating conditions. Houry has an in depth understanding of Mitochondrial disease and works closely with our Director of Lab, formulating the appropriate dosage forms based on their condition. She also oversees the clinical nursing team as they work to establish insurance coverage. Houry was instrumental in Chemistry Rx becoming the only ACHC Rare Disease Accredited compounding pharmacy and ensures that our clinical team remains committed to being an ally to the diverse patient population we service. As a multilingual pharmacist, she works directly with many embassies that oversee treatments in genetic treatment centers serviced by Chemistry Rx. In her 8 years with Chemistry Rx, Houry has watched the Folcroft facility grow from 6 employees to over 50 employees, and overseas operations in our nationally licensed 503A compounding facility located in Folcroft PA. She is personally licensed in a total of 18 states and ensures that quality and regulations which pertain to patient safety remain paramount to the operation. In her free time, she enjoys spending time with her 2 young children, husband and furthering her education, as she is an MBA candidate at Temple University. --- ### [Rebecca Ganetzky, MD](https://www.mitoaction.org/bios/dr-rebecca-ganetzky/) **Published:** October 11, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Rebecca Ganetzky, MD** is an associate professor of pediatrics at the University of Pennsylvania and an attending physician in the division of Human Genetics & Genomics at the Children’s Hospital of Philadelphia. She is passionate about building biochemical diagnostic tools to help identify, prognosticate and monitor patients with inborn disorders of energy metabolism. She has special clinical interests in primary lactic acidosis, disorders of pyruvate and tricarboxylic acid metabolism, mitochondrial ATP synthase deficiency and Pearson syndrome. Dr. Ganetzky graduated magna cum laude from Oberlin College with a BA in Biology & Computer Science from Oberlin College; she received a medical degree from the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University and completed a Pediatrics/Clinical Genetics combined residency and a Clinical Biochemical Genetics fellowship at the Children’s Hospital of Philadelphia. **Bio Types:** Speaker --- ### [Cristy Balcells, RN, MSN](https://www.mitoaction.org/bios/cristy-balcells/) **Published:** October 11, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Cristy Balcells was MitoAction’s executive director from 2006-2016. She is the author of the book “Living Well with Mitochondrial Disease” and is a master’s degree-level registered nurse whose daughter also has the disease. --- ### [Anil Darbari, MBBS, MD, MBA](https://www.mitoaction.org/bios/anil-darbari-mbbs-md-mba/) **Published:** March 11, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Anil Darbari, MBBS, MD, MBA, is the Director of Comprehensive Gastrointestinal (GI) Motility Center and a member of the Division of Pediatric Gastroenterology, Hepatology and Nutrition at Children’s National Hospital. He is Professor of Pediatrics at the George Washington University School of Medicine and Health Sciences. Dr. Darbari leads his team of pediatric GI motility experts, advanced practice providers and other allied staff at Children’s National Hospital. The goal of his team is to enhance the care of children living with complex GI problems related to the GI function and motility as a result of impaired function of the nerves and muscles of the GI tract. He has developed and led multidisciplinary programs, collaborating with several programs, such as [Colorectal](https://childrensnational.org/departments/colorectal) and [General Surgery](https://childrensnational.org/departments/general-and-thoracic-surgery), Cardiology, [Genetics](https://childrensnational.org/departments/rare-disease-institute), [Pulmonology](https://childrensnational.org/departments/pulmonary-medicine), [Behavioral Psychology](https://childrensnational.org/departments/center-for-neuroscience-and-behavioral-medicine/programs-and-services/psychology) and [Pain Medicine](https://childrensnational.org/departments/pain-medicine-care-complex) in the areas of GI motility disorders, disorders of gut brain interaction, [postural orthostatic tachycardia syndrome (POTS)](https://childrensnational.org/visit/conditions-and-treatments/brain--nervous-system/dysautonomia-and-pots), [cystic fibrosis](https://childrensnational.org/visit/conditions-and-treatments/airway-lungs/cystic-fibrosis), [autism](https://childrensnational.org/visit/conditions-and-treatments/mental-health-behavioral-disorders/autism), genetic and metabolic disorders. Dr. Darbari has practiced for over 25 years in pediatric gastroenterology, with a focus on conditions related to gastrointestinal motility and disorders of gut brain interaction. He has served as faculty at Johns Hopkins University, Kennedy Krieger Institute and Children’s National over the past three decades. Dr. Darbari has provided leadership in many organizations, including the Chair of Neurogastroenterology and GI Motility committee of the North American Society of Pediatric Gastroenterology, Hepatology and Nutrition. --- ### [Donna DiVito, MS, RDN, CPHQ, CLSSGB](https://www.mitoaction.org/bios/donna-divito-ms-rdn-cphq-clssgb/) **Published:** March 11, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Donna is a registered dietitian and project manager at the Children’s Hospital of Philadelphia. She has practiced for over 20 years as a dietitian, working with medically complex individuals throughout her career. --- ### [Kelly Maynard](https://www.mitoaction.org/bios/kelly-maynard/) **Published:** March 6, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") As our community celebrates the approval of two new therapies, understanding how to access coverage successfully has never been more important. In partnership with the Little Hercules Foundation and its founder, Kelly Maynard, this special MitoAction Expert Series will break down today’s evolving insurance landscape, including Medicaid, Medicare, ACA protections, and pharmacy vs. medical coverage, while also taking you behind the scenes to understand how claims are processed, how coding and prior authorizations impact access, and how to read and respond to an Explanation of Benefits. This practical, empowering session will equip patients and caregivers with the knowledge needed to anticipate barriers, avoid common missteps, and confidently advocate for timely access to treatment. --- ### [Brad Buchanan](https://www.mitoaction.org/bios/brad-buchanan/) **Published:** January 9, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Brad Buchanan taught British and Postcolonial Literature, as well as Creative Writing, at Sacramento State University until his retirement in 2016. He has published four book-length collections of poetry, most recently *The Scars, Aligned: A Cancer Narrative* (Finishing Line Press, 2019) and *Chimera* (Finishing Line Press, 2022). He has also published three academic books, and a medical memoir, *Living with Graft-Versus-Host-Disease*, was published in 2021. *Spy’s Mate,* his first novel, was published in October 2025. He was diagnosed with T-cell lymphoma in February 2015, and underwent a stem cell transplant in 2016, which involved a lengthy recovery, temporary vision loss, and first acute, then chronic graft-versus-host disease (GVHD). He is currently the Northern California chapter leader of Man Up to Cancer, a support group for men coping with cancer. He also facilitates recurring online Writing As Healing workshops through Cancer Bridges, the UC Davis Cancer Center, NBMTlink, the Roswell Park Cancer Center, the Sacramento Society for the Blind, and Blood Cancer United (formerly the Leukemia and Lymphoma Society). Additionally, he is a spokesperson and mentor for GVHDspeaks, an informational group sponsored by Incyte Corporation that raises awareness about graft-versus-host disease. --- ### [Sarah Chang, PhD](https://www.mitoaction.org/bios/sarah-chang-phd/) **Published:** January 6, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Sarah Chang, PhD, is Medical Strategy Lead at UCB, where she works on the thymidine kinase 2 deficiency (TK2d) program. TK2d is a rare, life-threatening mitochondrial disease caused by changes in the TK2 gene. Sarah focuses on helping doctors recognize TK2d earlier and improving the path to diagnosis, so patients can get the care they need as soon as possible. She believes that every person—no matter how rare their condition—deserves timely care, meaningful support, and hope for a better future. --- ### [Elad Jacoby, MD](https://www.mitoaction.org/bios/elad-jacoby-md/) **Published:** October 16, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Elad Jacoby is Head of Cell Therapy for Pediatric Hematology and Oncology at Sheba Medical Center, Israel, and Senior Lecturer at Tel Aviv University. A board-certified pediatric hematologist-oncologist, he leads clinical trials in advanced cellular therapies, including CAR T-cell and mitochondrial augmentation for children with cancer and mitochondrial disease. Dr. Jacoby completed fellowships at Johns Hopkins and the National Cancer Institute and is an expert in translating cell therapies from bench to bedside. --- ### [Noa Sher, PhD](https://www.mitoaction.org/bios/noa-sher-ph-d/) **Published:** October 16, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Noa Sher is Chief Scientific Officer at Minovia Therapeutics. A molecular and cellular biologist by training, she specializes in developing cell therapies for rare diseases, with expertise spanning bioinformatics, translational science, and clinical-stage product innovation. Dr. Sher has led R&D teams in academia and industry, including the design and execution of the first mitochondrial augmentation technology trials for mitochondrial diseases. She holds a PhD in Biochemistry from Hebrew University and performed postdoctoral research at the Whitehead Institute and the Technion. --- ### [William C. Copeland, PhD](https://www.mitoaction.org/bios/william-c-copeland/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") William Copeland received his Ph.D. in chemistry/biochemistry from the University of Texas at Austin in 1988 under the supervision of Dr. Jon Robertus studying histidine decarboxylase. He then completed my postdoctoral training at Stanford University School of Medicine, Department of Pathology with Dr. Teresa Wang, studying the human DNA polymerase alpha/primase complex. In 1993, he joined the National Institutes of Environmental Health Sciences, NIH, in Research Triangle Park, NC and is currently the head of the Mitochondrial DNA Replication Group in the Genome Integrity and Structural Biology Laboratory within the Intramural Research Division. He is also the Chief of the Genome Integrity and Structural Biology department at the NIEHS. Dr. Copeland has previously served as president of the Mitochondrion Research Society (2005 to 2007), as co-chair and chair of the UMDF grants committee (2005-2009), the UMDF Scientific and Medical Advisory Board (2009-2014), and the planning committee for the UMDF scientific symposium. The primary goal of the Mitochondrial DNA Replication Group is to understand the role of the replication apparatus in the production and prevention of mutations in mtDNA. Because the genetic stability of mtDNA depends on the accuracy of DNA polymerase gamma (pol γ), this project focuses on understanding the role of human pol γ in mtDNA mutagenesis. Furthermore, nearly 300 disease mutations in the POLG gene for the catalytic subunit of pol γ have been linked to several mitochondrial disorders, including progressive external ophthalmoplegia, sensory and ataxic neuropathy, Alpers syndrome, and male infertility. Dr. Copeland’s group studies the molecular effects of disease mutations in pol γ, its accessory subunit and the mitochondrial DNA helicase. He has more than 30 years of experience in research of mitochondrial DNA replication and has pioneered the characterization of the human DNA polymerase complex. He was the first to clone and characterize the genes for the mitochondrial DNA polymerase, POLG, and the accessory subunit of this polymerase, POLG2. The current projects address the role of human pol γ in mtDNA mutagenesis; study of the molecular effects of disease mutations in pol γ; and are elucidating the role of the human pol γ in induced mitochondrial toxicity caused by anti-HIV nucleoside analogs. **Bio Types:** Speaker --- ### [James Peterson, MS, LCGC](https://www.mitoaction.org/bios/james-jamie-peterson/) **Published:** October 11, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Jamie Peterson has been a clinical genetic counselor in the Mitochondrial Medicine Frontier Program (MMFP) at the Children’s Hospital of Philadelphia since 2018. He leads and coordinates the MMFP’s GC trainee clinical rotation schedule and has also been a biocurator for ClinGen Primary Mitochondrial Disease Gene Curation Expert Panel since 2021. His research interests lie in improving diagnostic testing options in primary mitochondrial disease and streamlining the diagnostic testing process. --- ### [Karen Richtman](https://www.mitoaction.org/bios/karen-richtman/) **Published:** August 29, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") MitoChampion Karen Richtman has been an educator for children and adults all her adult life. She has challenged herself with both knitting and sewing skills, so she could better teach others. She finds joy in making things for family and friends, as well as charitable contributions. Her accomplishments have earned her blue ribbons, as well as published patterns. She loves to take inspirations and make them into tangible items. Her three children and six growing grandchildren keep her busy with projects from sweaters to quilts. Her passion for all things knit or sewn brings her enormous joy and satisfaction. As a person with Mitochondrial Myopathy, knitting is her favorite craft. She loves to have something to do that is productive, even when she is out of energy and resting. “It is a great way to feel useful even on a challenging day. Additionally, it is fun and rewarding!” --- ### [Naomi Litchfield](https://www.mitoaction.org/bios/naomi-litchfield/) **Published:** August 15, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Naomi has extensive experience working in clinical research and with the rare disease community. She spent many years working at Great Ormond Street Hospital as a clinical research nurse caring for patients and families, including those living with ultra-rare conditions. As Director, Patient Advocacy at Bionical Emas, Naomi’s role is fundamental to the company mission of bringing life-changing medicines to patients around the world. Naomi works closely with patient advocacy groups to understand the unique needs and complexities of the patients they represent. Naomi is passionate about amplifying the patient voice and ensuring it is always represented in our early access programs, promoting a positive patient journey, and where possible reducing burden and co-creating with patient communities. Naomi facilitates regular dynamic training and education for patient advocacy groups around early access programs in a compliant and ethical manner. --- ### [Elizabeth Ames, MD, PhD](https://www.mitoaction.org/bios/elizabeth-ames-md-phd/) **Published:** February 28, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Ames completed her undergraduate degree at the University of Minnesota in Genetics, Cell Biology and Development. She then completed an MD/PhD at the University of Virginia. Her interest in genetics began during her PhD while studying RNA processing in fetal heart development. She then moved to the University of Michigan to complete a combined residency in both Pediatrics and Medical Genetics. After residency, she completed a fellowship in Medical Biochemical Genetics. She has remained at the University of Michigan as a clinical assistant professor in the departments of Pediatrics and Internal Medicine where she sees patients of all ages. Her clinical interests include novel therapies for inborn errors of metabolism, RASopathies, and neuromuscular conditions. **Bio Types:** Speaker --- ### [Glenn Noffsinger](https://www.mitoaction.org/bios/glenn-noffsinger/) **Published:** January 25, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Chef Glenn Noffsinger has over 20 years of experience in commercial, non-commercial, personal chef, and culinary instruction services. With unique insights based on real-world experience, he focuses on the success of each client and their needs. Utilizing a collaborative consulting approach that works alongside the client to help them achieve their goals and affect impactful, sustainable changes. **Bio Types:** Speaker --- ### [Joshua Baker, DO, FAAP, FACMG, LCH](https://www.mitoaction.org/bios/joshua-baker-do-faap-facmg-lch/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Josh Baker is the Director of Inborn Errors of Metabolism in the Division of Genetics, Genomics, and Metabolism at Ann & Robert H Lurie Children’s Hospital and Assistant Professor at Northwestern University Feinberg School of Medicine. He specializes in diagnosis, treatment, and management of IEMs; both small molecule and lysosomal disorders. He is also the Director of Newborn Screening at Lurie Children’s Hospital and Chair of the Illinois Newborn Screening Committee. He is the PI for several sponsored clinical trials for novel treatments of IEMs. In terms of investigator led research, he has a special interested in social determinants of health and their impact on metabolic care. --- ### [Kristen Lee, MD, U-M](https://www.mitoaction.org/bios/kristen-lee-md-u-m/) **Published:** May 22, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Lee earned her M.D. from Ross University School of Medicine in 2013, and completed Pediatric Residency at Ascension St. John Hospital in Grosse Point, MI, where she served as a Chief Pediatric Resident during her final year of residency. She completed Categorical Medical Genetics Residency at the University of Michigan in 2019. Following this she accepted a dual faculty position as a Clinical Lecturer in the Department of Pediatrics and Department of Internal Medicine for one year, before returning to Fellowship in 2020 to complete additional dedicated training in Medical Biochemical Genetics. After completion of Medical Biochemical Genetics Fellowship, she resumed her faculty position as a Clinical Assistant Professor in 2021. She is board certified in Pediatrics, Clinical and General Genetics, and Medical Biochemical Genetics. She has a dual faculty appointment in the Department of Pediatrics and the Department of Internal Medicine. As a faculty member in the Department of Pediatrics, she sees patients in the Pediatric Genetics and Biochemical Genetics Clinics, in addition to the newly created Multidisciplinary Genetics of Hearing Loss Clinic. As a faculty member in the Department of Internal Medicine, she sees patients in the Adult Medical Genetics and Cancer Genetics Clinics, in addition to patients with atypical diabetes and/or lipodystrophy in collaboration with MEND. **Bio Types:** Speaker --- ### [Martha Barnes, RD, U-M](https://www.mitoaction.org/bios/martha-barnes-rd-u-m/) **Published:** May 22, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Martha Barnes, RD is a registered dietitian at the University of Michigan in the division of Pediatric Genetics, Metabolism, and Genomic Medicine. She earned her degrees from Oakland University and Kansas State University and completed her pediatric dietetic internship at Michigan Medicine. Martha has a strong interest in inborn errors of metabolism and is a member of the Genetic Metabolic Dietitians International research committee. **Bio Types:** Speaker --- ### [Vanessa Rangel Miller, MS, MBA, CGC](https://www.mitoaction.org/bios/vanessa-rangel-miller-ms-mba-cgc/) **Published:** June 18, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Vanessa Rangel Miller, MS, MBA, CGC is Executive Director of Molecular Diagnostics Programs within Global Medical Affairs at Ultragenyx Pharmaceutical Inc. She was previously at Invitae, where she worked in Biopharma/Advocacy Business Development, after leading the Patient Insights Network (patient registry) programs. Prior to Invitae, she co-founded PatientCrossroads (d.b.a. AltaVoice), where she brought together genetics, technology, and academic partners in forming patient registries for rare and common conditions. Vanessa is a certified genetic counselor and has previously worked for Emory University as a laboratory and clinical genetic counselor. She currently serves on the Board of the Cure GM1 Foundation. --- ### [Yi Tak (Daisy) Tsang, PhD, LP](https://www.mitoaction.org/bios/daisy-tsang-phd-lp/) **Published:** February 28, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Yi Tak (Daisy) Tsang is a clinical assistant professor in Pediatric Psychology at the University of Michigan Health and C.S. Mott Children’s Hospital. She has a decade of experience working with children and families impacted by a wide range of mental health challenges and adverse events. Currently, she provides psychological assessment and treatment to children in primary care and outpatient specialty clinics. Previously, she spent two years providing inpatient psychological consults to children who were hospitalized for various medical conditions, including those admitted to the PICU and NICU. She has given seminars to medical professionals and learners on trauma-informed care, which continues to be the focus of her clinical and research passion. When she takes off her psychologist hat, Dr. Tsang enjoys baking, traveling, and taking funny videos of her two young children. **Bio Types:** Speaker --- ### [Joey Hernandez](https://www.mitoaction.org/bios/joey-hernandez/) **Published:** June 17, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Over the course of a couple months, her sight deteriorated from relatively average to the point of legal blindness due to what would later be diagnosed as Leber’s Hereditary Optic Neuropathy (LHON). Joey’s center field of vision became permanently blurry and she began to constantly see moving neon dots. Her “lights” are what sparked her initial interest in painting. Frustrated that she couldn’t find images representing how she saw the world, Joey decided to pick up a paint brush to try to show it herself with acrylics. Her first acrylic paintings were attempts at her own vision simulations. She quickly fell in love with the medium and has been painting ever since. Her work has since been featured in several shows, including the international APH InSights Art competition. Joey uses a variety of adaptive strategies to create her works. She hopes to change the narrative about who can create and enjoy art. She writes about some of these adaptive strategies in her blog, Artist’s Adaptation Corner. Joey is a proud alumna of California State University, Fullerton. She aspires to someday teach other blind and visually impaired people how to travel independently as an orientation and mobility specialist. When she’s not painting, Joey enjoys skateboarding with her white cane, playing with her cat, and telling terrible puns. --- ### [Rossana Sánchez Russo, MD](https://www.mitoaction.org/bios/rossana-sanchez-russo-md/) **Published:** May 15, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Rossana Sanchez’s lifelong dream was to become a clinical geneticist. Her career has been driven by a commitment to advancing early diagnosis and care for genetic diseases, with a strong focus on metabolic disorders. After completing her Pediatrics Residency at Miami Children’s Hospital, she trained in Genetics and Medical Biochemical Genetics at Emory University, where she now serves as an Assistant Professor and Pediatric and Metabolic geneticist. She led the highest enrolling site in a pivotal clinical trial for arginase 1 deficiency, contributing to the phase III pegzilarginase trial published in eClinicalMedicine, which supported therapy approval in Europe. She also participated in the 3q29 Emory Project, improving clinical guidance for this rare genetic syndrome. In addition to her clinical work, she trains and mentors future geneticists as Program Director for the Medical Genetics and Combined Pediatrics/Genetics residency programs. Dr. Sanchez is passionate about understanding the “whys” behind a patient’s complex symptoms at a molecular level. The reality is that few genetic conditions have approved therapies, but she is passionate about helping close that gap by being an investigator in clinical trials and patient registries, collaborating with experts worldwide, while partnering with patients and families to tailor care to their unique needs. --- ### [Oscar Henry Mayer, MD](https://www.mitoaction.org/bios/oscar-henry-mayer-md/) **Published:** May 9, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Oscar Henry Mayer is a Professor of Clinical Pediatrics at The Perelman School of Medicine at the University of Pennsylvania, and an Attending Pulmonologist within the Division of Pulmonology at the Children’s Hospital of Philadelphia (CHOP). He is the medical director of the CHOP Pulmonary Function Testing (PFT). He has been actively involved in the specialized care of patients with neuromuscular disease and complex chest wall and spinal deformity. He has been the pulmonologist in the Neuromuscular Center for the last 23 years and in the Center for Thoracic Insufficiency Syndrome since its inception 20 years ago. He is on a number of national committees and study groups involved in pediatric pulmonary function testing, the assessment and management of children with complex thoracospinal disorders and neuromuscular disorders, on which he has lectured nationally and internationally and has published over 90 journal articles and book chapters on his research and clinical interest. --- ### [Daniel Nale, MD](https://www.mitoaction.org/bios/daniel-nale-md/) **Published:** February 7, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Nale has been in practice since 1981. He did his residency in pediatric medicine at the University of Michigan. He has been selected numerous times as one of the Best Pediatricians in Dallas by “D Magazines.” Professional associations include: Dallas County Medical Society, Pediatric Society of Greater Dallas, Christian Medical Association, and American College of Pediatricians. He has a lifelong commitment to improving the lives of children and their families in the Dallas Metro area. --- ### [Amy Goldstein, MD](https://www.mitoaction.org/bios/dr-amy-goldstein/) **Published:** October 11, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") I am a child neurologist with a subspecialty focus and expertise in primary mitochondrial disorders. I have been the Clinical Director of the Mitochondrial Medicine Frontier Program since July 2017. Under my leadership, we have expanded the clinical service to include inpatient consultations at CHOP as well as the Hospital of the University of Pennsylvania (for adults), and we have quadrupled the outpatient patient volume. I am actively involved in direct patient care, clinical diagnosis, and management, striving to make ongoing improvements in patient care. We perform retrospective and prospective natural history studies and interventional clinical trials where I serve as Physician Lead. In addition to my clinical service, my major contributions to the field of Mitochondrial Medicine include education and awareness. I serve the patients and families by volunteering my service for the major patients’ advocacy support groups. I am a past member of the Scientific and Medical Advisory Board for the United Mitochondrial Disease Foundation (UMDF) and have served as a medical advisor for MitoAction. I have served the clinicians who care for patients with mitochondrial disease as a board member and immediate past president of the Mitochondrial Medicine Society, and I am a founding member of the Mitochondrial Care Network. I am a contributing author to numerous publications and am frequently invited to give talks at national and international meetings. I am also a faculty member of CMEM (Center for Mitochondrial Epigenomic Medicine) and Professor of Clinical Pediatrics at the University of Pennsylvania, where I also hold a secondary appointment in Neurology. **Bio Types:** Medical Advisory Committee --- ### [Ted Toufas, BS, PharmD, RPh](https://www.mitoaction.org/bios/dr-ted-toufas/) **Published:** October 11, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Ted Toufas is a Clinical Pharmacist and Pharmacist-in-Charge of the Acton Pharmacy Compounding Lab who has a Bachelor of Science from Worcester Polytechnic Institute in Biochemistry & Genetics, and a Doctorate of Pharmacy from MCPHS University. He has a passion for learning and imparting information to patients and colleagues. Ted has received training in compounding medications, hazardous drug compounding, veterinary compounding and Quality Assurance. Working closely with physicians and patients, he develops formulations that would best suit patient needs. Under his supervision, Acton Pharmacy’s compounding lab has gained accreditation with the Pharmacy Compounding Accreditation Board and is the first in New England (3rd in the USA) to have a certificate of distinction in hazardous medication compounding. He has been at Acton Pharmacy in one capacity or another since 2005, and strives for a continuous improvement in the quality of healthcare for our patients. **Bio Types:** Speaker --- ### [Jirair Bedoyan, MD, PhD, FACMG](https://www.mitoaction.org/bios/jirair-bedoyan-mdphd-facmg/) **Published:** October 17, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Jirair K. Bedoyan, MD, PhD, FACMG is an Associate Professor of Pediatrics at the University of Pittsburgh School of Medicine in the Division of Genetic and Genomic Medicine. He directs the Clinical Biochemical Genetics Fellowship Program and Medical Genetics Clinical Research at UPMC Children’s Hospital of Pittsburgh. He is a University of Pittsburgh IRB Committee member and serves on the United Mitochondrial Disease Foundation (UMDF) Scientific and Medical Advisory Board (SMAB). His clinical and research interests relate to inborn errors of metabolism, including disorders of pyruvate metabolism particularly pyruvate dehydrogenase complex deficiency and pyruvate carboxylase deficiency. He sees both pediatric and adult patients. --- ### [Erin Neil Knierbein, DO](https://www.mitoaction.org/bios/erin-neil-knierbein-do/) **Published:** July 22, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Erin Neil completed her undergraduate degree at the University of Notre Dame. She completed a DO at Kansas City University of Medicine and Biosciences. Her interest in pediatric neurology began after she discovered how much can be learned from the neurologic examination, the beauty of childhood development and the possibility of strong connections with pediatric patients and their families. She completed a pediatric neurology residency at Wayne State University/Children’s Hospital of Michigan and a fellowship in pediatric neuromuscular medicine at University of Texas Southwestern/Children’s Medical Center, Dallas TX. At the University of Michigan, she is a clinical associate professor in the department of Pediatrics, division of neurology and director of the pediatric neuromuscular program. She leads the coordinating center for Spinal Muscular Atrophy newborn screening at U of M for the state of Michigan. Her clinical interests include multidisciplinary care of patients with neuromuscular disorders, clinical trials for rare neurologic diseases, newborn screening, and early treatment, including gene therapy, for patients with neuromuscular disorders. **Bio Types:** Speaker --- ### [Keith McIntire](https://www.mitoaction.org/bios/keith-mcintire/) **Published:** February 28, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") As the Program Manager of INFORM, Keith McIntire is responsible for the day-to-day activities of the Pittsburgh-based FAOD program including overseeing fundraising, marketing, and the development and maintenance of the INFORM website. Keith’s career focused on corporate communications, marketing, fundraising, and business administration experience. After graduating with a degree in illustration and design from the Art Institute of Pittsburgh he operated his own design studio for several years focusing on healthcare and industrial illustration. He then became the Art Director of the Public Relations Department of Seton Hill University. Keith’s work gained him national attention and he was hired to work for ABS/TelCove an internet, data, and voice company focused on communications delivery to customers in 27 states and 70 markets on a dedicated end to end fiber optic network. Keith is the oldest heart patient followed since birth by the UPMC Children’s Hospital of Pittsburgh. He was born with Tetrology of Fallot with absent pulmonary leaflets and underwent three open heart surgeries for total repair by the age to 23. Keith was a member of the American Heart Association, where he held volunteer leadership positions and was a board member for the Pittsburgh chapter. Keith assisted cardiologist William Neches, MD as a Co-founder of the UPMC/Children’s Hospital of Pittsburgh’s, Dr. Bill Neches Heart Camp for Kids, one of the first camping programs nationally to offer a sleepover summer camping experience for children with congenital and/or acquired heart disease. In 2023 he passed the torch of his directorship to a new leadership team after 29 years of holding that position and a total of 33 years with the camp. **Bio Types:** Speaker --- ### [Jessica Priestley, MD PhD](https://www.mitoaction.org/bios/jessica-priestley-md-phd/) **Published:** February 28, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Jessica Priestley completed graduate school at the Medical College of Wisconsin, medical school at Michigan State University College of Human Medicine, and residency/fellowship at the Children’s Hospital of Philadelphia. Following her training, she returned to West Michigan to serve patients and families with rare disease. She is a Medical and Biochemical Geneticist at Corwell Health West Michigan/Helen DeVos Children’s Hospital. Her clinical interests include inborn errors of metabolism and genetic conditions of the cardiovascular, hepatobiliary, and renal systems. Her research interests include newborn screening, clinical outcomes, and health equity within the field of genetics. **Bio Types:** Speaker --- ### [Shannon Babcock, PhD](https://www.mitoaction.org/bios/shannon-babcock-phd/) **Published:** February 28, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Shannon Babcock received her Bachelor’s of Science in Biochemistry from Gonzaga University in 2017 and has recently earned her PhD in Molecular and Medical Genetics from the Oregon Health and Science University in Portland, OR. While at OHSU, Shannon studied the molecular mechanisms involved with and potential treatments for LCHADD chorioretinopathy using a novel LCHADD mouse model. Since graduating in May 2024, Shannon has begun a laboratory genetics and genomics fellowship at the Henry Ford Hospital in Detroit, MI where she is working to become a clinical lab geneticist. In her free time, Shannon enjoys playing tennis and spending time outdoors with her dog. **Bio Types:** Speaker --- ### [Fernando Scaglia, MD](https://www.mitoaction.org/bios/fernando-scaglia/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Scaglia has been involved in clinical research studies that are evaluating nitric oxide flux and production in children with MELAS syndrome. This mitochondrial syndrome is associated with metabolic stroke episodes and it is thought that these episodes could reflect the effect of nitric oxide depletion in the small vasculature. By assessing nitric oxide production and the effect of arginine and citrulline supplementation in these children, potential therapeutic strategies could be offered to them. Furthermore, he is also interested in conducting glucose kinetic studies to assess the glucose metabolism and to better understand the mechanisms of diabetes in patients with this syndrome. Dr. Scaglia is also involved in researching the identification of nuclear gene defects of pediatric mitochondrial disorders and in particular mitochondrial DNA depletion syndromes through exome sequencing. Other research interests focus on a natural history study of mitochondrial disorders in collaboration with other centers in United States of America and Canada. **Bio Types:** Speaker --- ### [Alessandro Prigione, MD, PhD](https://www.mitoaction.org/bios/alessandro-prigione/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Prof. Alessandro Prigione received an MD from the University of Milan Italy in 2002 and a PhD from the San Raffaele University in Italy in 2008. During his training, he worked on neurological disease at University of Milan-Bicocca Italy, mitochondrial diseases at University California Davis (UCD) USA, mouse induced pluripotent stem cells (iPSCs) at San Raffaele Scientific Institute in Milan Italy, and human iPSCs at the Max Planck Institute in Berlin Germany. In 2014, he established his junior group at the Max Delbrueck Center for Molecular Medicine (MDC) in Berlin Germany. In 2019, he moved to Heinrich Heine University (HHU) in Düsseldorf Germany, where he is a tenured Associate Professor of Pediatric Metabolic Medicine in the Department of General Pediatrics. The interest of the Prigione group is to develop induced pluripotent stem cells (iPSC)-based approaches for disease modeling and drug discovery of rare incurable neurological and neurodevelopmental disorders affecting mitochondrial metabolism. A specific focus is on Leigh syndrome, which is the most severe mitochondrial disease affecting children. Using neurons and brain organoids from patients with Leigh syndrome, they are dissecting the neuronal-specific disease mechanisms in order to identify targets on interventions. The lab applies genome editing technologies to nuclear and mitochondrial genome to develop engineered disease models. They employ the models to perform compound screenings using high-content imaging approaches. The search of therapies for Leigh syndrome is the focus of an international project coordinated by Prof. Prigione that is called CureMILS and is funded by the European Joint Programme for Rare Diseases (EJPRD). Prof. Prigione has published more than 80 scientific articles (h-index: 34). He is a member of the *International Society for Stem Cell Research* (ISSCR), the scientific council of AFM Telethon, the Scientific Committee of the *World Congress on Targeting Mitochondria*, and the Scientific Committee of *Mitocon*. He is a scientific advisor for *Cure Mito* Foundation and was a member of the Scientific Program Organizing Committee for *Euromit 2023* and for the *International Meeting Stem Cell Network NRW 2023*. He is the recipient of the Career Advancement Initiative from the *Journal of Molecular Biology* in 2017 and the Award for Outstanding Achievements by *the World Mitochondria Society* in 2021. Since May 2021, Prof. Prigione is the Editor-in-Chief of the journal *Stem Cell Research* (Elsevier). --- ### [Lovelynn Ivey](https://www.mitoaction.org/bios/lovelynn-ivey/) **Published:** October 23, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Lovelynn comes to MitoAction with over 20 years’ experience in Development and Events. Her color coordinated organizational skills form the foundation and her unparalleled energy creates the atmosphere for our signature events such as the SKR Derby Day Fundraiser and Energy Walks throughout the country. She thrives on building trusting & valued relationships with sponsors and donors while celebrating their involvement in educating the world about Mitochondrial Disease. “Community involvement has always been close to my heart, and I am thrilled to have found MitoAction in 2015. It takes a village, and every sponsor, donor, and participant are an integral part of making a difference for our community.” Fun Fact: Lovelynn served as the technical advisor on the blockbuster movie “Wedding Crashers” and even plays a wedding planner in the movie. Contact Lovelyn at: lovelynn@mitoaction.org **Bio Types:** Staff --- ### [Devin Shuman, MS, LCGC](https://www.mitoaction.org/bios/devin-shuman-ms-lcgc/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Devin Shuman (she/her) has a masters degree in genetic counseling from UC Irvine in California and currently works as a telehealth genetic counselor at the non-profit Genetic Support Foundation. She has previously worked at an autism and developmental medicine center and a high risk pregnancy center. Outside of work Devin runs teenage and young adult focused mitochondrial disease community supports, including two Facebook groups and a weekly Zoom support call for teens – complete with virtual proms, holiday events, and roundtables with physicians. Recent projects have included a mitochondrial DNA Ted-Ed video and giving lectures to genetic counseling graduate programs about mitochondrial disease. --- ### [Kathryn Chatfield, MD](https://www.mitoaction.org/bios/dr-katheryn-chatfield/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Chatfield is an Associate Professor of Pediatrics, Cardiology, University of Colorado School of Medicine and the Director of the Cardiac Genetics Clinic. Her degrees are from the Geisel School of Medicine at Dartmouth and Dartmouth College. She completed a combined Pediatrics/Genetics residency at Children’s Hospital of Philadelphia, and her Pediatric Cardiology Fellowship at the University of Colorado Anschutz Medical Campus. Dr. Chatfield’s clinical interests include Noonan-spectrum disorders, Marfan syndrome and related connective tissue disorders, familial congenital heart disease, metabolic and inherited forms of cardiomyopathy. Her research focus is the role of mitochondrial energy metabolism in pediatric cardiomyopathy and heart failure. --- ### [Sommer Gaughan, MPH, RDN](https://www.mitoaction.org/bios/sommer-gaughan/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Sommer Gaughan, RD, is a Registered Dietitian, who has been in clinical practice for 21 years. Over 15 of those years have been dedicated to inborn errors of metabolism at Children’s Hospital Colorado. She obtained her undergraduate degree in Food Science & Human Nutrition from the University of Florida and is currently completing a graduate degree in Public Health focused on Health Promotion, Education and Behavior through the University of South Carolina. She has participated in peer-reviewed publications, clinical trials and the development of patient focused educational tools and programs. Currently, she is working with an international team of metabolic dietitians on a nutrition guidelines manuscript for the management of Pyridoxine Dependent Epilepsy. She is passionate about educating and learning from others on the nutritional management of inborn errors of metabolism. **Bio Types:** Speaker --- ### [Austin Larson, MD](https://www.mitoaction.org/bios/dr-austin-larson/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Larson is board certified in pediatrics, medical genetics and biochemical genetics. His clinical interests include mitochondrial diseases, congenital disorders of glycosylation, ocular genetics and rural outreach. He is an investigator for multiple clinical trials for new therapies for rare diseases. He is also the program director for the medical genetics residency program.This is a heading **Bio Types:** Speaker --- ### [Shana McCormack, MD, MTR](https://www.mitoaction.org/bios/dr-shana-mccormack-md-mtr/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Shana McCormack, MD, is an attending physician in the Division of Endocrinology and Diabetes and an assistant professor of Pediatrics at the Perelman School of Medicine at the University of Pennsylvania. She cares for children with pediatric endocrine disease. She has a clinical interest in patients with endocrine dysfunction related to individually rare metabolic disorders such as primary mitochondrial disease, Freidreich ataxia, and lipodystrophy. She also has an interest in inherited and acquired forms of hypothalamic and pituitary dysfunction, in particular those associated with abnormal energy balance and obesity, like craniopharyngiomas. Finally, she cares for children with all types of obesity and its complications, such as type 2 diabetes mellitus and pseudotumor cerebri syndrome/idiopathic intracranial hypertension. As a physician-scientist, she investigates the neuroendocrine systems that regulate energy balance in humans. Her translational research program has two main areas of focus. First, she studies individuals with metabolic disorders with characterized by risk for diabetes mellitus, including primary mitochondrial diseases, Friedreich’s ataxia, and lipodystrophy. Second, she focuses on brain disorders associated with excess weight gain, including brain-tumor related hypothalamic obesity syndrome and pseudotumor cerebri syndrome/idiopathic intracranial hypertension. She performs detailed assessments of mitochondrial bioenergetics and metabolism in humans with these conditions using, for example, non-invasive imaging techniques, stable isotopes, and integrated metabolomics and proteomics. She complements these *in vivo* studies with *in vitro* experiments to more fully explore the tissue-specific causes and consequences of abnormal energy balance in model systems such as patient-derived cell lines. **Bio Types:** Speaker --- ### [Julie Gortze, RN](https://www.mitoaction.org/bios/julie-gortze-rn/) **Published:** October 11, 2023 **Author:** Russell Weller --- ### [Gene Kelly](https://www.mitoaction.org/bios/gene-kelly-executive-director-medical-affairs-at-stealth-biotherapeuticsgene-kelly/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Gene Kelly joined Stealth BioTherapeutics in 2014 and is currently the Executive Director of Medical Affairs. He has broad experience in pre-commercialization activities and has held leadership roles at both public and private biotechnology companies. Gene has worked closely with Mitochondrial Medicine Experts and Rare Disease Patient Advocacy Groups to gain insights that guide clinical development and disease awareness programs. He holds a bachelor’s degree in Pharmacy. **Bio Types:** Speaker --- ### [Tasia Techisky, MBA](https://www.mitoaction.org/bios/tasia-rechisky/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Tasia Rechisky is a patient, rare disease advocate and writer. Living for the past 30 years with a rare fatty acid oxidation disorder (FAOD) called VLCADD (very long chain acyl-coa dehydrogenase deficiency), she has dedicated her adulthood to advocating and sharing lessons learned with the rare disease community. She started in college giving presentations to science and medical students about life as a patient, helping these students connect their studies to real patients. Tasia has participated on the Ultragenyx Fatty Acid Oxidation Disorder Patient Leadership Council for several years during which time she helped coordinate a patient group to go to the FDA to testify on a groundbreaking drug. She is a contributor to the “Mighty” and other publications such as, “Mental Health America” on both chronic and rare disease. She is most interested in how to stay psychologically healthy while battling a rare and/or chronic illness. Recently, she testified on both federal and state-level legislations to create a Rare Disease Advisory Council, which now has an active rare disease advisory council. She is a board member and DE&I subcommittee chair of Rare New England, an organization dedicated to bringing together and provide resources to those touched by rare and complex diseases. She is also an advisory council member for Rare Disease Legislative Associates (RDLA). **Bio Types:** Speaker --- ### [Michelle Cincotti, RN](https://www.mitoaction.org/bios/michelle-cincotti/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") I became a nurse for my son Jake Bray after he was very sick for the first few years of life with LCHAD. Feeling helpless as a non-medical parent, I decided to quit my job in high tech and went back to school at age 30 for nursing while becoming a single mother and working full time. Of course, in addition to caring for Jake alone through many hospital stays. It took 8 years to complete my Associates in Nursing in 2012 at Middlesex Community College in Massachusetts. While in nursing school I worked at Lahey Hospital in Massachusetts which was a trauma level 1 hospital in the ER as a nursing assistant, where I learned almost more than I did in all of nursing school. I went on to complete my Bachelors in Nursing at Endicott College in Massachusetts graduating in 2018. I have worked in nursing homes, home care, a psychiatric unit and Cardiology, Orthopedic and ER departments at Lahey in Mass and then at Grand Strand and McLeod Hospitals in South Carolina. I recently followed my next dream and moved to Myrtle Beach, SC with Jake after he graduated high school in 2020 so we could enjoy warmer weather and be outside much more often. Jake and I love to swim and on a lighter note I bought a motorcycle for myself after graduating nursing school. As a nurse I will always remember what it is like to be “on the other side of the bed”. And as a parent my nursing experience has benefited Jake’s care in many ways. We have been to many conferences, and met with a few different metabolic doctors in various states for second opinions and clinical trials. Jake is now 21 years old and is doing very well and continues to be my inspiration. And it is now my pleasure to give back and share from my personal and professional experience. **Bio Types:** Speaker --- ### [Aaina Koacchar, MD, MBBS](https://www.mitoaction.org/bios/dr-aaina-koacchar/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Kochhar is a Board Certified Clinical and Biochemical Geneticist. She trained at Mayo Clinic, Minnesota and Stanford University, California and has been in practice for the last 10 years. She joined the team at Children’s Hospital Colorado in 2020. Dr. Kochhar has participated in peer-reviewed publications and clinical trials for rare diseases. She manages children with a variety of metabolic disorders in her clinic, including fatty acid oxidation disorders, urea cycle defects, amino acid disorders, organic acidemias. She is passionate about improving outcomes and long-term quality of life for patients and their families with Inherited metabolic diseases. **Bio Types:** Speaker --- ### [David Holtzman, MD](https://www.mitoaction.org/bios/dr-david-holtzman/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Holtzman is a pediatric neurologist and has experience treating many patients with mitochondrial disease. His current research in mitochondrial physiology has recently revealed a relationship between autism and autism spectrum disorder (ASD) and abnormal mitochondrial function. --- ### [Jamie Emory](https://www.mitoaction.org/bios/jamie-emory/) **Published:** October 11, 2023 **Author:** Russell Weller --- ### [Susan Orloff, OTR/L](https://www.mitoaction.org/bios/susan-orloff-otr-l/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Susan is owner of Children’s Special Services and has over 30 years experience helping children in both schools and the clinical setting. Susan brings fresh perspective and ideas to help adults AND children with mitochondrial disease through her hands-on experiences. [Read Susan’s article on “Understanding the Energy Connection”.](https://www.mitoaction.org/wp-content/uploads/2019/10/Article-Understanding_mitochondrial_sensory_issues.pdf) Susan is the author of Learning Re-Enabled and has won many awards for her outstanding contribution to the disability community. --- ### [Christoph Westphal, MD, PhD](https://www.mitoaction.org/bios/dr-westphal/) **Published:** October 11, 2023 **Author:** Russell Weller --- ### [Valerie Powers Smith, Esq](https://www.mitoaction.org/bios/valerie-a-powers-smith-esq/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") With thirteen years of experience in the field of special needs and disability law, Valerie A. Powers Smith, Esq. brings to [Slovak Baron & Empey, LLP](http://www.sbelawyers.com/) the following highly specialized practice areas: health care insurance, disability insurance, Medicaid, Medicare, special needs trusts, trust administration, estate planning & administration, guardianships, and accessing federal and state government disability-based benefits. Over this time, Valerie has concentrated her legal work in the area of health care law and has vigorously advocated for families and people with disabilities to gain medically necessary care from private insurance companies, Medicaid, Medicare, and other health insurance providers. She has additionally focused her practice in the areas of special needs trusts and estate planning and routinely advise families, executors, and trustees on the area of special needs law and the administration of the same. Valerie has written extensively on a variety of disability law topics, has co-authored several publications on accessing adult services, Medicaid, and health insurance; and is a regular contributor to the Arc of New Jersey’s Healthy Times Newsletter. She has also lectured for disability-related groups throughout Pennsylvania, New Jersey, and D.C. Valerie currently sits as one of the 12 members appointed by the Governor to the New Jersey Medical Assistance Advisory Council and is serving her second three-year term. She is also a member of the Board of Directors for Easter Seals of Southeastern Pennsylvania and Caregivers of New Jersey; and an Advisory Board member of Family Voices New Jersey & Autism Family Services of New Jersey. On the national level, Valerie also serves as a legal consultant for MitoAction; and is on the legal advisory board for the Turner Syndrome Foundation, Inc. Valerie can be contacted via email at . --- ### [Nancy Moore](https://www.mitoaction.org/bios/nancy-moore/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Nancy Moore from Solace Nutrition is an experts on metabolism and Medical Food with experience in developing medical foods for rare conditions such as Inborn Errors of Metabolism, Food Allergies and certain neurological disorders. --- ### [James Dykens, PhD](https://www.mitoaction.org/bios/dr-james-dykens/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. James Dykens is the Director of Investigative Cellular Toxicity at Pfizer Drug Safety Research & Development and author of the 2008 book [“Drug Induced Mitochondrial Dysfunction”](http://www.amazon.com/Drug-Induced-Mitochondrial-Dysfunction-James-Dykens/dp/0470111313/ref=sr_1_4?ie=UTF8&s=books&qid=1240382923&sr=8-4). --- ### [Pat O'Malley, MD](https://www.mitoaction.org/bios/dr-pat-omalley/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. O’Malley has cared for several families with mitochondrial disease and helped them to find quality of life and balance despite the tragic progression of the disease. Join us as we learn more about palliative care and hospice, and work to uncover the benefits and break down the myths around what is often only associated with end-of-life. Dr. O’Malley has trained in pediatrics, pediatric critical care, emergency medicine and palliative care at Massachusetts General Hospital and Children’s Hospital Boston. She has served as the director of the Pediatric ED at MGH for 25 years and is also the director of the new Pediatric Palliative Care Team. --- ### [John Raycroft](https://www.mitoaction.org/bios/john-jack-raycroft/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") John “Jack” Raycroft is a financial planner at Baystate Financial Services and a MetDESK Specialist with MetLife’s Division of Estate Planning for Special Kids. He works exclusively with families who have a dependent with special needs. Through workshops and consultations, Jack educates families (and the organizations that support them) on the issues critical to successful special needs planning. His work helps families prepare for the future and the time when they will not be present, or able, to care for their themselves or their children. He educates them on what they can do today and tomorrow to make their future more secure. Jack speaks publicly throughout Massachusetts, New Hampshire and Rhode Island on the subject of special needs planning. He has presented at multiple organizations including The National Downs Syndrome Congress and LADDERS at Massachusetts General Hospital for Children. Additionally, Jack serves as the Adjunct Planned Giving Director of *maaps*(Massachusetts Association of Approved Private Schools), a network of over 100 schools/programs serving all populations of the special needs pre-22 community. Jack provides charitable planning services to these schools upon request. Jack is a parent of a child with special needs and he volunteers his time for the North Shore Arc, the Special Olympics and The Independent Living Center of the North Shore. --- ### [Mark De Fries](https://www.mitoaction.org/bios/mark-de-fries/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Mark De Fries from Solace Nutrition is an expert on metabolism and Medical Foods. The mission of Solace Nutrition is the development of Medical Foods that target diseases which can be better managed through nutrition and thus promote a better quality of life. --- ### [John Celebi, MA](https://www.mitoaction.org/bios/joan-celebi/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Joan Celebi is a certified life coach and special needs mom, and the author of *Overwhelmed No More! The Complete System for Balanced Living for Parents of Children with Special Needs.* Through internationally acclaimed tele-workshops and tele-coaching programs, Joan helps parents successfully navigate life with a child with special needs. Joan holds a Master’s Degree in Education from Harvard University. --- ### [Carole Slipowitz, PhD](https://www.mitoaction.org/bios/carole-slipowitz-phd/) **Published:** October 11, 2023 **Author:** Russell Weller --- ### [Alex Flores, MD](https://www.mitoaction.org/bios/dr-alex-flores/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Alex Flores serves on the MitoAction Medical Advisory Board and iis Chief of Pediatric Gastroenterology and Nutrition, Floating Hospital for Children at Tufts Medical Center, and an Associate Professor at Tufts University School of Medicine. He is a graduate of the Universidad de San Carlos de Guatemala School of Medical Sciences, and received graduate training at Baylor College of Medicine, Children’s Hospital Boston/Harvard Medical School, Duke University Medical Center, Hospital Militar, Jacaltenango Hospital, Roosevelt Hospital in Guatemala, and the World Health Organization-UNICEF. Dr. Flores is board certified in Pediatric Gastroenterology and Pediatrics and works closely with Dr. Mark Korson to support metabolic and mitochondrial patients with GI dysfunction. In addition to developing the LAPEG procedure, Dr. Flores’ specialties include GI motility disorders, and general pediatric gastroenterology. --- ### [Lee Rachel Jurman](https://www.mitoaction.org/bios/lee-rachel-jurman/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Lee Rachel Jurman is a private disability advocate and case manager with [Personal Disability Consulting, Inc](http://www.personaldisability.com/). She helps adults living with disabilities and their families navigate the maze of public and private systems, and make informed decisions about living and working with disabilities. Lee has more than 30 years of experience working with people with a range of disabilities. She was executive director of the Information Center for Individuals with Disabilities, a statewide non-profit Massachusetts agency for 6 years. She subsequently led a national corporate disability consultation and referral program at Work/Family Directions for over 9 years. Ms. Jurman has worked in a number of publicly funded community programs, and understands the services and systems available to people with disabilities. She has been in private practice since 2002, bringing compassion, experience, and a determined approach to identifying and securing the resources her clients need. Lee is a summa cum laude graduate of Ohio University, with a Bachelor Degree in Music Therapy. She has a Master in Management of Human Services from the Florence Heller School at Brandeis University. Lee is married, with two daughters adopted from China. --- ### [Steve Sommer, MD, PhD](https://www.mitoaction.org/bios/dr-steve-sommer/) **Published:** October 11, 2023 **Author:** Russell Weller --- ### [Abby Usen, MS, RD](https://www.mitoaction.org/bios/abby-usen/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Abby Usen received her B.S. in Food and Nutrition Sciences and Dietetics from the University of Vermont. She completed her dietetic internship at the Frances Stern Nutrition Center and received her M.S .from the Friedman School of Nutrition Science and Policy at Tufts University. Since gradating from Tufts, she worked as a clinical dietitian/clinical nutrition manager at the Massachusetts Hospital School in Canton, Ma where she specialized in nutrition for children and adolescents with developmental disabilities. Most recently she has been an outpatient dietitian specializing in Pediatric Gastroenterology at Floating Hospital for Children at Tufts Medical Center. A great portion of her time is specifically working with patients with failure to thrive, gastrointestinal dysmotility and mitochondrial disease. She also spent 3 years working with patients having Inborn Errors of Metabolism and is the current Chair, of the Massachusetts Pediatric Practice Group. --- ### [Virginia Tawa, PharmD](https://www.mitoaction.org/bios/dr-virginia-tawa-pharmd/) **Published:** October 11, 2023 **Author:** Russell Weller --- ### [Maggie Orr, RN, MSN, EdM](https://www.mitoaction.org/bios/maggie-orr-rn/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Maggie Orr is a trained as a Family Nurse Practitioner at Yale School of Nursing and did primary care before staying home to care for her daughter, Mamie Rose, who died of mitochondrial disease (Complex I defect) in 2003. She has undergraduate degrees in Spanish and Early Childhood Education from Arizona State University, and a master’s in education from Harvard Graduate School of Education. --- ### [Marcus Favero, MD](https://www.mitoaction.org/bios/dr-marcus-favero/) **Published:** October 11, 2023 **Author:** Russell Weller --- ### [Nancy Slate, MS](https://www.mitoaction.org/bios/nancy-slate-ms/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Nancy is the research coordinator for research coordinator for Dr. Sims’ Partners DNA and Tissue Repository for Molecular Studies in Disorders of Energy Metabolism at MGH and work with Dr. Sims as a mitochondrial counselor in the Mitochondrial Clinic at MGH. She is also the study coordinator for Dr. Vamsi Mootha at the Center for Human Genetic Research at MGH where she coordinates research studies and manages the IRB protocols. --- ### [Al Muto, PharmD](https://www.mitoaction.org/bios/al-muto/) **Published:** October 11, 2023 **Author:** Russell Weller --- ### [Margaret O'Rilley, RN](https://www.mitoaction.org/bios/margaret-oriley-rn/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Margaret is a registered nurse who has been practicing for 18 years. 11 of those years have been spent at the Adult Metabolic Diseases Clinic at Vancouver General Hospital where she focuses her practice on working with adults with mitochondrial disease. Through the years, Margaret has learned a great deal about living with mitochondrial disease from the patients she works with. She is passionate about her work and about supporting this population. Her other passion is her 3 little boys, ages 2, 5 and 7. --- ### [Shellie Léger, MSW, MBA](https://www.mitoaction.org/bios/shellie-leger-msw-mba/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Shellie Léger, MSW MBA is a licensed clinical social worker. She is also a certified special ed teacher, and has worked with children and families for 25 years in various clinical settings. She has been with the Coordinated Care Clinic at MGHfC for three years, and especially enjoys working with special needs families. She founded the MGHfC Sibshops to address the needs of the typically developing sibs of medically fragile children, and to ideally restore some sense of normalcy and balance in the family. In her spare time Shellie enjoys reading and writing literary fiction, arguing politics, and singing. --- ### [Mona Inocentes](https://www.mitoaction.org/bios/mona-inocentes/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Mona Inocentes has been a nurse for 20 years and has worked for the past 15 years as an infusion specialist. She is certified in infusion nursing and currently works for ThriveRx in the Boston area. Her expertise is in complex intravenous (IV) education for both adults and children. As a nutrition liaison she is involved in the total coordination of patient nutrition from discharge to clinical follow-up at home. --- ### [Deb Pfister, MS, RDN, CNSC](https://www.mitoaction.org/bios/deb-pfister/) **Published:** October 11, 2023 **Author:** Russell Weller --- ### [Susan Pacheco, MD](https://www.mitoaction.org/bios/dr-susan-pacheco/) **Published:** October 11, 2023 **Author:** Russell Weller --- ### [John Moon](https://www.mitoaction.org/bios/john-moon/) **Published:** October 11, 2023 **Author:** Russell Weller --- ### [Matthew Weiss, MD, FCCP](https://www.mitoaction.org/bios/dr-matthew-d-weiss-md-fccp/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Matthew Weiss received an AB cum laude and with High Honors in philosophy from Dartmouth College in 1997, writing an award-winning thesis in biomedical ethics. He then attended the University of Illinois College of Medicine at Chicago, earning his MD with Honors and graduating as class valedictorian in 2001. Dr. Weiss served as an intern and resident in the Department of Medicine at the Massachusetts General Hospital, followed by training in the Harvard Combined Pulmonary and Critical Care Medicine Fellowship Program, and then completed an additional fellowship in the Harvard Medical School Division of Sleep Medicine at Beth Israel Deaconess Medical Center and Children’s Hospital. Dr. Weiss is board certified in internal medicine, pulmonary disease, critical care medicine, and sleep medicine and has co-authored numerous peer-reviewed articles in bioethics, health policy, and sleep medicine. He currently practices pulmonary, critical care, and sleep medicine at Harbor Medical Associates, a multi-specialty group practice where he also directs the sleep medicine program, and at South Shore Hospital, both in Weymouth, Massachusetts. Matthew Weiss lives with his wife and two daughters, ages 2 and 4 ½, who taught him almost everything practical that he knows about pediatric sleep medicine, in Brookline, Massachusetts. --- ### [Marnie Taimuty-Loomis, MA, LBS](https://www.mitoaction.org/bios/mannie-taimuty-loomis-ma-lbs/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Mannie Taimuty-Loomis is the founder and executive director of Jonah & The Whale Foundation, a nonprofit organization that assists families, primarily in the US and Canada, dealing with disabled and chronically ill children. Ms. Taimuty-Loomis holds a Master’s Degree in Higher Education, specializing in teaching. Her thesis focused on the transitional needs of autistic high school students wishing to pursue a college education. Adding to her expertise in Autism Spectrum Disorders, Mannie is also the co-author of Autism and Higher Education: Putting the Pieces Together, publication date TBA. In addition to running J&TWF, Mannie currently works as a Behavioral Specialist Consultant where she writes and oversees clinical intervention service plans for children with autism. Finally, Ms. Taimuty-Loomis is more than just a professional in the field – she is also a mother of five children, three of whom have suffered or continue to suffer with Mitochondrial Disease. Adding to her personal experience with the difficulties in raising a child with special needs, Ms. Taimuty-Loomis and her family not only faced the unexpected death of their son Jonah (the namesake of the Foundation) in 2001, but they also faced false MSbP allegations regarding their other two afflicted children back in 2004. Although she and her husband were vindicated of all wrongdoing, the experience has left a long-lasting impact; not only on their family and how they deal with Mitochondrial Disease, but also in how they run the Foundation and continue their mission to help families advocate responsibly and communicate effectively. --- ### [Kimberly Serra, PT, DPT, MTC, CSCS](https://www.mitoaction.org/bios/kimberly-serra-pt-dpt-mtc-cscs/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Ms. Serra received her Bachelor of Science degree in physical therapy in 1998 from the University of Connecticut and a clinical Doctorate degree in physical therapy in 2007 from the University of St. Augustine, Florida. She also holds a Bachelor of Science degree from Providence College (’93). Subsequent to her formal training, Ms. Serra has pursued a certification in advanced manual therapy also from the University of St. Augustine, Florida. Additionally, Ms. Serra is certified as a strength and conditioning specialist through the National Strength and Conditioning Association. She is a member of the American Physical Therapy Association. She offers her patients 14 years of orthopedic and sports medicine experience. She enjoys golf, soccer, figure skating, bike riding, and hanging out with friends. --- ### [Greg Enns, MD](https://www.mitoaction.org/bios/dr-greg-enns/) **Published:** October 11, 2023 **Author:** Russell Weller --- ### [Kirsten Casale](https://www.mitoaction.org/bios/kirsten-casale/) **Published:** October 11, 2023 **Author:** Russell Weller --- ### [Richard Haas, MD](https://www.mitoaction.org/bios/dr-richard-haas/) **Published:** October 11, 2023 **Author:** Russell Weller --- ### [Peter Kullar, MD, ENT](https://www.mitoaction.org/bios/dr-peter-kullar/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Peter Kullar is a clinical research fellow at Newcastle University’s Welcome Centre for Mitochondrial Disease Research. --- ### [Joseph Clark, PhD](https://www.mitoaction.org/bios/dr-joseph-clark-phd/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Clark is a professor of neurology at the University of Cincinnati College of Medicine. His many research interests include creatine deficiency disorders, glutathione and oxidative stress, and the role of cyclocreatine in the treatment of autism spectrum disorder. Dr. Clark serves as a medical advisor to the Creatine Deficiency Association ([creatineinfo.org](http://creatineinfo.org/)) and has also published numerous scientific publications and presentations on creatine, creatine transport, and creatine deficiency. Dr. Clark is also author of the book “My Ambulance Education.” Joseph F. Clark has lived in Oxford, Paris and Moscow, and now resides in Cincinnati with his partner Janice and their 10 cats. He is currently a scientist and researcher at the University of Cincinnati, studying the causes and treatments of stroke and creatine transporter deficiency (CTD). Joe has authored or co-authored more than 100 scientific journal articles and three scientific texts. Learn more about Dr. Clark and his work at http://www.josephfclark.com. --- ### [Ben Bronstein, MD](https://www.mitoaction.org/bios/ben-bronstein/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Ben Bronstein** is the Vice President of Clinical Development at Stealth Peptides Incorporated, a clinical stage biopharmaceutical company developing a novel class of mitochondria-targeted peptide therapeutics for treatment of ophthalmic and orphan diseases. In addition to his role with Stealth Peptides, Ben is a Visiting Scholar at the Wyss Institute of Biologically Inspired Engineering at Harvard University. A board certified pathologist, Ben began his professional career on the staff of the Massachusetts General Hospital and on the faculty of Harvard Medical School. He has spent the past 25 years in entrepreneurial roles at life science firms and in venture capital. Ben has founded or held senior management positions at several venture-backed life science firms, including BioSurface Technology (regenerative medicine), Peptimmune (immunotherapeutics), Vidus Ocular (glaucoma device) and Neuron Systems (dry AMD). Most recently Ben has served as a founder and senior vice president of Access BridgeGap Ventures, the life science investment unit of Access Industries, Inc. Ben is also a member of the Weill Cornell Medical College Faculty Industry Council and the Oversight Committee of the Coulter Translational Partnership program in Biomedical Engineering at Boston University. --- ### [Kathy Rivers, MD](https://www.mitoaction.org/bios/kathy-rivers-md/) **Published:** October 11, 2023 **Author:** Russell Weller --- ### [Brenda Senger, RN, MA](https://www.mitoaction.org/bios/brenda-senger-rn-ma/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Brenda Senger RN, MA is a PhD candidate at Washington State University School of Nursing. Brenda is an educator, a nurse, and parent of a child with mitochondrial disease. Brenda’s goal is to identify stress and coping in parents of children with Mito in order to educate health care professionals and provide adequate support to parents of kids with Mito. By participating in the survey (link above), you can be a part of helping healthcare providers understand the unique stressors facing parents of kids with mitochondrial disease. --- ### [Christine Knox](https://www.mitoaction.org/bios/christine-knox/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") I was born in Alberta, but raised primarily in Victoria, British Columbia Canada. Although, I have lived in most provinces of Canada, including the Arctic. Nature has been a huge part of my life, spending many hours either in the rainforest or at the beach or anywhere else I’ve lived has given me a profound love of nature in all it’s forms. Well maybe not spiders and snakes too much. My creativity began with spending hours coloring in coloring books, filling every page very carefully. Then I moved onto my first ‘real’ drawing at about 10 years old. These early drawings were centered around my surroundings and family. Pencils and pencil crayons were the first tools I learned to draw with so it’s not surprising that they have become my preferred medium. Although who knows where I’ll go next. My favorite subjects to draw from are animals and nature. Capturing the realistic feeling of fur, the smooth or rough textures found in nature are amazing to be able to portray. I primarily work on a few different surfaces when drawing, Dura-lar, Pastelmat, Bristol Board Paper or Suede Matte Board. For most of my adult life I had to concentrate on a regular income so I trained as a floral designer and eventually opened my own floral design studio. When I became ill with Mito at the age of 51, I had to close my business. I felt a deep sense of loss and purpose. I turned to my art to give me that purpose back and allow me to be creative in other ways. I began taking commissions for pet portraits with colored pencil. I’ve also started painting with acrylics again. Being able to have a flexible work schedule definitely works for me with Mito. I’m very excited to be able to mentor and share my lifetime of learning with students. I’ve always enjoyed teaching a number of different things, floral design, crocheting, knitting, drawing, crafts and quilting. To see some examples of my work you can go to my website:[ www.christineknox.ca](http://www.christineknox.ca/). --- ### [Melissa Walker, MD, PhD](https://www.mitoaction.org/bios/melissa-a-walker-md-phd/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Melissa A. Walker, MD, PhD** is a fourth year trainee in the Massachusetts General Hospital Child Neurology Residency Program. Dr. Walker’s clinical and scientific interests focus on improving the understanding and treatment of primary mitochondrial disorders. Dr. Walker received her MD and PhD degrees from Columbia University College of Physicians and Surgeons in New York City, New York. She trained in Pediatrics at the Massachusetts General Hospital for Children in Boston, Massachusetts. --- ### [Jolan Walter, MD, PhD](https://www.mitoaction.org/bios/jolan-e-walter-md-phd/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Jolan E. Walter, MD, PhD is the Director of Pediatric Immunodeficiency Program at Massachusetts General Hospital *for* Children. Dr. Walter’s clinical care focuses on patients with immune deficiency. She jointly follows patients with mitochondrial disease and immune dysfunction with the Neurogenetics Program (Dr Kathy Sims, Dr Amel Karaa and Dr Melissa Walker). She also conducts translational research on autoimmune manifestation of primary immunodeficiencies. Dr. Walter has graduated with a MD and PhD from University of Pecs, Hungary. Dr. Walter is has trained in Pediatrics at Children’s Hospital of the King’s Daughters, Eastern Virginia Medical School and in Allergy/Immunology at Boston Children’s Hospital. During her training, she conducted research both in the field of Virology and Immunology. --- ### [Katherine Sims, MD](https://www.mitoaction.org/bios/dr-katherine-sims/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Katherine Sims is a Pediatric Neurologist at the Massachusetts General Hospital. Her clinical work over the last 30 years has focused on the broad scope of neurogenetic disorders including those of the lysosome, particularly neuronal ceroid lipofuscinosis \[Batten disease, NCL disorders\], Fabry disease, Norrie disease, general neurometabolic disorders and, most recently, the primary mitochondrial energy metabolism disorders Over the last 15 years, Dr. Sims, working as clinician scientist, has directed the design and development of Patient Registries and BioRepositories for Mitochondrial, NCL and Norrie diseases. She is an expert diagnostician and works with great facility in identifying clinical cases and facilitating entry into appropriate clinical translational studies. --- ### [Matthew Kline, MD, MS, FACS](https://www.mitoaction.org/bios/dr-matthew-kline/) **Published:** October 11, 2023 **Author:** Russell Weller --- ### [Travis Wilson](https://www.mitoaction.org/bios/travis-wilson/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Travis Wilson is the president and CEO of Stealth Peptides Incorporated, a clinical stage biopharmaceutical company developing a novel class of mitochondria-targeted peptide therapeutics for treatment of ophthalmic and orphan diseases. Stealth Peptides’ lead compound in Phase 2 development, Bendavia, maintains mitochondrial bioenergetics including membrane potential and respiration under pathological conditions. Bendavia has been shown to improve cellular ATP levels in disease, and prevent pathological reactive oxygen species (ROS) formation, thereby improving compromised cardiac, renal and skeletal muscle function. Travis also serves as a director on several boards for preclinical and clinical stage companies, providing operational and management oversight to a portfolio of companies developing drugs across a broad spectrum of therapeutic focus, including oncology, cardiology and critical care. Travis is a member of the life science investment team at the Morningside Group, a private investment group. --- ### [MaryBeth Hollinger, RN, MSN](https://www.mitoaction.org/bios/marybeth-hollinger-rn-msn/) **Published:** October 11, 2023 **Author:** Russell Weller --- ### [Peter Stacpoole, MD, PhD](https://www.mitoaction.org/bios/dr-peter-stacpoole/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Stacpoole received his Ph.D. in 1972, from the University of California at San Francisco. He received his MD degree in 1976, from Vanderbilt University in Nashville, Tennessee. He also completed his internship and residency (1976-1978) training in Internal Medicine and Endocrinology Fellowship (1978-1980) training at Vanderbilt University. In 1980, Dr. Stacpoole became a member of the Department of Medicine at the University of Florida where he is currently a Professor of Medicine, Biochemistry and Molecular Biology. ##### Research Interests Dr. Stacpoole’s federally-sponsored research is broadly focused in two areas: intermediary metabolism and new drug development. He conducts patient oriented research on the Shands Hospital Clinical Research Center (CRC) and collaborates with investigators across N. America into the causes and treatment of genetic mitochondrial diseases, due to nuclear DNA or mitochondrial DNA mutations in genes that encode enzymes of carbohydrate metabolism or oxidative phosphorylation. These studies also engage collaborators with expertise in neurology, neurobehavior, clinical pharmacology, neuroscience and cell and molecular biology. Related research includes mechanistically oriented laboratory studies on the molecular and biochemical consequences of loss-of-function mutations in the mitochondrial pyruvate dehydrogenase complex (PDC) and therapeutic interventions for PDC deficiency. He also collaborates with other faculty at the University of Florida to investigate the regulation of homocystine metabolism in humans in response to different genotypes or nutritional perturbations. With regard to new drug development, Dr. Stacpoole and his colleagues have developed a prototype for a novel class of investigational drugs for the treatment of acquired or inborn errors of mitochondrial energy metabolism and lactic acidosis. The prototype of this class, dichloroacetate (DCA), is undergoing clinical trials on the CRC in healthy subjects and in children and adults with congenital lactic acidosis. Its sites and mechanisms of action are being further explored by in vitro and in vivo laboratory studies employing cell and molecular techniques and mass spectrometry. --- ### [Kendall Wallace, PhD, DABT, ATS](https://www.mitoaction.org/bios/kendall-b-wallace-ph-d-dabt-ats/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Kendall B. Wallace, Ph.D., DABT, ATS is a Professor and Associate Dean for Faculty Affairs at the University of Minnesota Medical School Duluth campus. He is also founding Director of both the University of Minnesota Toxicology Research Center and the all-University Toxicology Graduate Program. Dr. Wallace’ primary area of research is the mechanisms of involvement of mitochondria in the pathogenesis of chemical induced metabolic disorders. He has published over 300 manuscripts, book chapters, technical reports, and research abstracts, almost all of which are in primary toxicology journals. Dr. Wallace has edited scientific reference books on the topics of Free Radical Toxicology and the Molecular Biology of the Toxic Response and has served on the editorial boards for a number of leading journals in toxicology; since 2011 he has held the position of Co-Editor in-Chief for Toxicology. Besides being past President of the Society of Toxicology, Dr. Wallace has also served as President of the Mitochondrial Research Society and the Academy of Toxicological Sciences and Chair of the Board of Directors for the American Board of Toxicology, the ILSI-Health and Environmental Sciences Institute, and the United Mitochondrial Disease Foundation. Scientific Advisory panels on which Dr. Wallace has served include the U.S. EPA FQPA Scientific Review Board and Chair of the U.S. FDA Pharmaceutical Sciences Nonclinical Studies Subcommittee Expert Working Group on Biomarkers of Drug-Induced Cardiac Toxicity, the Scientific Advisory Panel of the HRSA Vaccine Injury Compensation Program Medical Advisory Panel and the U.S. FDA CFSAN Food Advisory Committee. --- ### [Tai Venuti, MPH](https://www.mitoaction.org/bios/tai-venuti/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Tai Venuti has more than 20 years of health education, marketing, sales, community and public relations experience in nonprofit, government and corporate arenas. As Allsup’s manager of strategic alliances, she develops and grows relationships with organizations that share the company’s commitment to empowering people with disabilities to live lives as financially secure and healthy as possible. Ms. Venuti is a former journalist and public relations executive. She previously managed national public health campaigns for the U.S. Department of Health and Human Services. She holds a master’s degree in public health from St. Louis University, a bachelor’s degree in journalism from Michigan State University, and is accredited by the Public Relations Society of America. --- ### [Bruce Cohen, MD, FAAN](https://www.mitoaction.org/bios/dr-bruce-h-cohen/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Bruce H. Cohen attended college at Washington University in St. Louis and a BA in chemistry, graduating summa cum laude in 1978. He received his medical degree from the Albert Einstein College of Medicine in Bronx, N.Y. in 1982 and went on to his pediatric residency at the Children’s Hospital of Philadelphia, folloed by a residency in neurology at Columbia Presbyterian Medical Center in New York. He then obtained a two-year American Cancer Society fellowship in neuro-oncology at the Children’s Hospital of Philadelphia. In 1989 Dr. Cohen joined the Cleveland Clinic’s department of Neurology, and served as chief of Pediatric Neurology from 1999-2002, with joint appointments in the Clinic’s Taussig Cancer Center, the Eepartment of Neurosurgery and the department of Pediatrics. In 2011, he joined Akron Children’s Hospital in Akron, Ohio, as Director of Pediatric Neurology and then the Director of the NeuroDevelopmental Science Center. He serves in many leadership roles within Akron Children’s Hospital. His specialty interests include adult and pediatric neuro-oncology, mitochondrial medicine, neurofibromatosis, neurometabolic diseases and pediatric neurology. He has served on a number of committees for the Children’s Oncology Group, the American Academy of Neurology (AAN), the Child Neurology Society. He currently serves as chairman of the Coding Subcommittee within the Medical Economics and Management Committee of the AAN, and Secretary-Treasurer of the CNS. His past leadership positions include Chairman of the Pediatric Section of the AAN, Chairman of the Practice Committee of the CNS and Counsellor from the Midwest of the CNS, and President of the Professors of Child Neurology. Dr. Cohen has authored 96 peer-reviewed publications, published 32 book chapters, and given 590 invited lectures. Dr. Cohen has been named among the “Best Doctors in Ohio” and “Best Doctors in America” since 1994. He also served on the board of trustees of the United Mitochondrial Disease Foundation from 1999 to 2006, was a member of the UMDF’s Scientific and Medical Advisory board, and was reappointed to the board of trustees in 2010. He is married to Anna and has four children. --- ### [Martha Rinker, JD](https://www.mitoaction.org/bios/martha-rinker-jd/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Martha Rinker JD is NORD’s Vice President of Public Policy leading the public policy team on matters affecting the rare disease community. Martha is responsible for all Federal and State legislative and regulatory issues and the development and implementation of advocacy strategy and relationships with key stakeholders. Prior to joining NORD, Ms. Rinker was the Chief Advocacy Officer for the American Association of Diabetes Educators (AADE), the Legislative Counsel and Senior Director of Policy, Practice and Advocacy for the American Podiatric Medical Association (APMA) and the Director of Government Relations for the American Orthotic and Prosthetic Association (AOPA). In addition, Ms. Rinker was the Legislative Director for Congresswoman (now Senator) Barbara Mikulski of Maryland and held staff positions with both the Pennsylvania Senate and the Maryland General Assembly. --- ### [Paul Melmeyer, MPP](https://www.mitoaction.org/bios/paul-melmeyer/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Paul Melmeyer currently serves as the Assistant Director of Public Policy at the National Organization for Rare Disorders. In this role, Paul leads the Federal policy operations in developing and advocating for the enactment and implementation of pro-rare disease patient policy. Prior to joining NORD, Paul held positions with the Center for American Progress, AARP and Senator Bob Casey (D-PA). --- ### [Tim Boyd, MPH](https://www.mitoaction.org/bios/tim-boyd/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Tim Boyd currently serves as the Associate Director of Public Policy at the National Organization for Rare Disorders. In this role, Tim leads the State policy operations in developing and advocating for the enactment and implementation of pro-rare disease patient policy. Prior to joining NORD, Tim was the Director of Domestic Policy at AIDS Healthcare Foundation where he was responsible for the development and execution of domestic policy and advocacy initiatives, including initiatives pertaining to AIDS services, drug pricing, and regulatory issues. --- ### [Kristen Roberts, MD, RD](https://www.mitoaction.org/bios/kristen-roberts/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Kristen Roberts is an Assistant Professor of Clinical Medicine at The Ohio State University Wexner Medical Center and a Registered Dietitian specializing in gastrointestinal nutrition, intestinal failure and home nutrition support. She received her bachelor’s degree in Dietetics at Bowling Green State University and her Master’s degree and internship in Human Nutrition at Arizona State University. She completed her PhD in Human Nutrition at The Ohio State University where she studied the impact of dietary interventions for disease prevention. Kristen has spent most of her clinical years working with intestinal failure patients and specializing in intestinal rehabilitation and home parenteral nutrition. She is an active member in The Ohio Society for Parenteral and Enteral Nutrition and is the coauthor of the iThrive program, which is a nutritional guide for consumers with intestinal dysmotility. Kristen has spoken nationally on the management of acid/base imbalances in clinical practice, improving nutrition support education for physicians and the management of intestinal failure patients. In addition to these presentations, she has published several articles and book chapters dedicated to the clinical management of intestinal failure. --- ### [Kris Engelstad, MS, CGC](https://www.mitoaction.org/bios/kris-engelstad-ms-cgc/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Kris Engelstad MS CGC, is a board-certified genetic counselor and a program coordinator at Columbia University Medical Center. For the past 15 years she has focused on clinical research in mitochondrial disorders, including: several clinical trials, natural history studies, NAMDC patient registry and biobank, and the Mitochondrial Replacement Therapy Survey. She provides genetic counseling services for various clinical trials, a pediatric neuromuscular clinic and for adult and pediatric patients with mitochondrial disorders. --- ### [Greg Macpherson](https://www.mitoaction.org/bios/greg-macpherson/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Greg Macpherson is Chief Executive Officer of MitoQ Ltd. He completed a Bachelor of Pharmacy at University of Otago School of Medicine in 1992. Subsequently he has been owner and director of a number of startup businesses that include New Zealand’s largest residential care services pharmacy, NZ’s first robotic dispensing laboratory, a pharmaceutical wholesaling company, and a software development company. He has been a partner and board member of a pharmacy chain associated with one of NZ’s leading retailers. --- ### [Cheryl Clow, RN](https://www.mitoaction.org/bios/cheryl-m-clow-rn/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Cheryl is a registered nurse and has been Clinical Care Coordinator in the Department of Pediatrics at Albany Medical Center for 26 years. She worked in the Section of Pediatric Endocrinology for 13 years prior to working with the Section of Genetics and Inborn Errors of Metabolism, her current position since 2003. She has worked facilitating care of patients with mitochondrial disorders during that time, both pediatric and adult. She was voted Employee of the Year at Albany Medical Center in 2014, and the Albany Times Union’s “Salute to Nurses” Nurse of the Year Finalist two years in a row, 2015 and 2016. She is currently a member of the Medical Advisory Council for Make-A-Wish Northeast NY. --- ### [Kristi Wees, MSC, CHEM](https://www.mitoaction.org/bios/kristi-wees/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Ms. Wees is a patient advocate with Empowered Medical Advocacy. She assists parents and caregivers each week in navigating toward improved quality of life for their child and their families. --- ### [Mary Castos-Summers](https://www.mitoaction.org/bios/mary-castro-summers/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Mary is the parent of 3 adult sons. Her youngest son was born with complex health needs. For the past 30 years, she has relied on research skills honed as a paralegal with her personal and then professional work experience with the New England Regional Genetics Group, the FIRST Project at the University of Massachusetts Medical School, Family TIES of Massachusetts, and now Franciscan Children’s in Brighton, MA. As a member of the committee that reviews applications for The Marcel’s Way Family Fund at MitoAction for the past 5 years, Mary has learned of the impact of mitochondrial disease and has assisted many families in finding local community resources to address their needs. Mary is passionate about community resource information-sharing and making connections among families supporting children and adults who have special health care needs. She was personally supported by others and enjoys packing back those acts of kindness. Her motto in this work is, “you may be caring for your loved one by yourself, but you should never feel alone.” --- ### [Richard Frye, MD, PhD](https://www.mitoaction.org/bios/dr-richard-frye/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Richard Frye is a pediatric neurologist and Chief of the Division of Neurodevelopmental Disorders at Phoenix Children’s Hospital. He received his MD/PhD from Georgetown University in 1998. He completed a residency in Pediatrics at the University of Miami, Residency in Child Neurology and Fellowship in Behavioral Neurology and Learning Disabilities at Harvard University/Children’s Hospital Boston and Fellowship in Psychology at Boston University. He holds board certifications in Pediatrics, and in Neurology with Special Competence in Child Neurology. Dr. Frye is a national leader in autism research. He has authored over 100 peer-reviewed publications and book chapters, and serves on several editorial boards of scientific and medical journals. --- ### [Amanda Balog, CGC](https://www.mitoaction.org/bios/amanda-balog/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Amanda Balog is a board-certified genetic counselor and is the lead genetic counselor for the Mitochondrial and Metabolic Testing Programs at GeneDx. Prior to joining GeneDx, Amanda worked for several years as a clinical and research genetic counselor specializing in immune and lysosomal storage disorders. --- ### [Guy Miller, MD, PhD](https://www.mitoaction.org/bios/guy-miller/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Guy Miller, MD, PhD is Founder, Chairman, and Chief Executive Officer of BioElectron Technology Corporation. BioElectron is a technology company focused on biological energy. Dr. Miller holds a PhD in chemistry and an MD, with subspecialty training in critical care medicine. He completed his surgical internship at University of Chicago, and completed his residency and fellowship training at Johns Hopkins, where he was an assistant professor. His research has been funded by numerous organizations including DARPA. He is an attending physician in medical surgical critical care at Stanford University Medical Center/VAPAHCS. --- ### [Michio Hirano, MD](https://www.mitoaction.org/bios/dr-michio-hirano/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Michio Hirano is a Professor of Neurology and Chief of the Division of Neuromuscular Medicine at Columbia University Medical Center. For over 20 years, Dr. Hirano’s translational research focused on mitochondrial disease and inherited myopathies. His laboratory has identified novel causative genes for mitochondrial neurogastrointestinal encephalomyopathy (MNGIE), X-linked scapuloperoneal myopathy, primary coenzyme Q10 (CoQ10) deficiencies and has studied cell and mouse models of these and other diseases including thymidine kinase 2 (TK2) deficiency. He has also been investigating allogeneic hematopoetic stem cell transplantation for MNGIE, pharmacological therapies for TK2 deficiency and, with Kris Engelstad and Dr. Dieter Egli, mitochondrial replacement therapy. Since 2009, Dr. Hirano has directed the NIH U54-funded North American Mitochondrial Disease Consortium (NAMDC). --- ### [Ann Weaver](https://www.mitoaction.org/bios/ann-weaver/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Ann is a Consumer Advocate for ThriveRx and the parent of a 19 year old son with chronic health issues. She recognizes the importance of providing teachable moments for children growing up with chronic health needs and guiding them to independence. She has advocated for parenteral and enteral consumers as an OLEY volunteer regional coordinator. As an CA she supports HPEN consumers and has developed transition materials for parents of children requiring nutrition support. Ann has presented on transitioning youth on HPEN at OLEY, AGMD and ASPEN. She has shared the perspective of consumer/caregiver at ASPEN and to other professionals, students and industry leaders in the parenteral and enteral nutrition field. Ann holds an undergraduate degree in Psychology from Illinois Wesleyan University in Bloomington, Illinois. --- ### [Sumit Parikh, MD](https://www.mitoaction.org/bios/dr-sumit-parikh/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Parikh is the Director of the Cleveland Clinic Neurogenetics, Metabolic & Mitochondrial disease program. His clinical and research interests include the genetic diagnosis and treatment of patients with mitochondrial cytopathies, inborn errors of metabolism, cognitive and developmental regression, autism, leukodystrophies and developmental delays. He is part of the North American Mitochondrial Disease Research Consortium (NAMDC) and the Primary Investigator for the Pearson Syndrome Natural History study. He is an invited lecturer at national meetings and hospitals. He completed his residency in pediatrics and fellowship in child neurology at the Children’s Hospital of Pittsburgh and received additional training in genetics and metabolism at Cleveland Clinic and Centers for Inherited Diseases of Metabolism. Dr. Parikh has had the privilege of having Bruce Cohen, Charles Hoppel and Marvin Natowicz serve as his teachers during that time. He joined the Cleveland Clinic in 2004. Since 2007, Dr. Parikh has been selected as one of “America’s Best Doctors.” He serves as Scientific & Medical Advisor to the United Mitochondrial Disease Foundation, Cyclic Vomiting Syndrome Association and the International Foundation for CDKL5 Research. He is the Past President of the Mitochondrial Medicine Society. He is an invited faculty member of the North American Metabolic Academy. He was on the scientific planning committee of the Child Neurology Society and is an ad hoc reviewer for the Journal of Child Neurology, Journal of Inherited Metabolic Disease and Molecular Genetics & Metabolism. --- ### [Reenie McCarthy](https://www.mitoaction.org/bios/reenie-mccarthy/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Reenie McCarthy is the Chief Executive Officer and a member of the Board of Stealth BioTherapeutics. Reenie is a 20+ year veteran of the investment team of Morningside, Stealth’s principal investor, with extensive experience working with private nonclinical and clinical stage companies developing drugs across a broad spectrum of therapeutic areas. --- ### [James Carr](https://www.mitoaction.org/bios/jim-carr/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Jim Carr is the Chief Clinical Development Officer of Stealth BioTherapeutics. He brings over 20 years of industry experience in the areas of clinical development, medical affairs, lifecycle management, new product planning, and global marketing to Stealth. Previously, Jim was an Executive Director in the Global Cardiovascular Franchise at GlaxoSmithKline. Prior to GlaxoSmithKline, Jim held the role of Vice President of Clinical Development at Arca Biopharma. During Jim’s time in industry, his efforts have centered on cardiovascular drug development, with a specific focus on heart failure. Jim’s educational background is a Doctor of Pharmacy degree from the University of Minnesota and post-graduate training in clinical cardiovascular pharmacology. Prior to joining the pharmaceutical industry, Jim was on the clinical faculty at the University at Buffalo-SUNY School of Pharmacy. --- ### [Hope Schreiber, PsyD, ABPP/CN](https://www.mitoaction.org/bios/hope-schreiber/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Hope Schreiber, PsyD, ABPP/CN is a clinical neuropsychologist working in the Psychiatry Department of Tufts Medical Center and Associate Clinical Professor in Tufts University School of Medicine. She has worked in both outpatient and inpatient settings for over 20 years, and has particular interest in learning and executive functioning in adolescents and young adults. She directs the College Learning Disorders/ ADHD Program at Tufts Medical Center, and has co-edited a book entitled Adult Learning Disorders: Contemporary Issues, published this year (2008). Her research interest in mitochondrial disorders developed through her work with Mark Korson, MD. Many of the teens and young adults she was referred for neuropsychological evaluation show organizational and executive function problems. Learning more about how to enhance such students’ educational progress has become an area of interest. --- ### [Parag Shah, MD, MPH](https://www.mitoaction.org/bios/parag-shah-md-mph/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Shah currently serves as the medical director of the Chronic Illness Transition Program at Lurie Children’s Hospital in Chicago, IL. The Program works to provide education to youth and staff regarding transition, advise departments on their transition programs, and conduct some research surrounding transition. Dr. Shah graduated from Albert Einstein College of Medicine and completed his residency training at Children’s Memorial Hospital in Chicago. He currently also works as a hospitalist at LaRabida Children’s Hospital. --- ### [Annette Hines, Esq](https://www.mitoaction.org/bios/annette-m-hines/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Annette M. Hines is the founding partner of Special Needs Law Group of Massachusetts, PC and has been practicing in the areas of Special Needs, Elder Law and Estate Planning for over twenty years. Her clients include individuals and families of children with special needs, the elderly, and others in the community. She received her BA for the University of Vermont, her MBA from Suffolk University, and her JD from Howard University School of Law. Ms. Hines brings personal experience with special needs to her practice, as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to the practice. Recognized as a Distinguished Citizen by ARC Massachusetts and cited for public service by both the Massachusetts State Senate and House of Representatives, Ms. Hines works tirelessly on behalf of people with disabilities. She was designated a 2016 Top Women of Law from Massachusetts Lawyers Weekly and has been named to the Massachusetts Super Lawyers list every year since 2014. Ms. Hines is a frequent expert speaker and a regular contributor to *[ThriveGlobal](https://thriveglobal.com/)*. She is also the host of the weekly podcast *[Parenting Impossible: The Special Needs Survival Podcast](https://podcasts.apple.com/us/podcast/parenting-impossible-the-special-needs-survival-podcast/id1480043957),* where she offers inspiration, support, expertise, and a wide range of discussions that will help you survive and thrive as you support your loved one with special needs. Ms. Hines is also the author of *[Butterflies and Second Chances: A Mom’s Memoir of Love and Loss](https://specialneedscompanies.com/book/),* the inspiring true story of a mother’s special needs journey, and her struggle to secure the best possible life for her child in the face of bureaucratic resistance and marital crisis. It is a story of sacrifice, dedication, and the life-altering adjustments a special needs parent has to make when confronted with the unthinkable. But most of all, it’s about love and an extraordinary mother-daughter relationship that flourished without words in the darkest shadows of adversity. --- ### [Shannon von Felden, MPP, RSDSA](https://www.mitoaction.org/bios/shannon-von-felden/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Shannon von Felden is the Director of Rare Disease Legislative Advocates, a program of the EveryLife Foundation for Rare Diseases. She works with rare disease advocates across the country to engage at the local, state, and federal level. She began her career on Capitol Hill as a Legislative Assistant for Congresswoman Shelley Berkley (NV) working on health care and veterans affairs issues. Shannon has worked with national nonprofit organizations to further their policy and advocacy goals including Juvenile Diabetes Research Foundation and National Osteoporosis Foundation. She received her Master of Public Policy from American University. --- ### [Dave Williams](https://www.mitoaction.org/bios/dave-williams/) **Published:** October 11, 2023 **Author:** Russell Weller --- ### [Margaret Klehm, RN, MPH, MSN, FNP](https://www.mitoaction.org/bios/margaret-klehm/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Margaret Klehm is nurse practitioner in the metabolic clinic at Tufts New England Medical Center. --- ### [Arthur Margolis, PharmD](https://www.mitoaction.org/bios/arthur-margolis/) **Published:** October 11, 2023 **Author:** Russell Weller --- ### [Becky Sansbury, M.Div](https://www.mitoaction.org/bios/becky-sansbury/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Becky Sansbury, M.Div., specializes in crisis care for individuals and organizations. After serving as a hospice chaplain for fourteen years, she published After the Shock: Getting You Back on The Road to Resilience When Crisis Hits You Head On. Becky provides compassionate perspectives and practical tools designed to help people stabilize and move forward, even in difficult times. Both a speaker and consultant to organizations such as Ronald McDonald House Charities® and Blueprint™ Medicines, Becky also provides emotional support within the rare disease community. --- ### [Alejandro Dorenbaum, MD](https://www.mitoaction.org/bios/alejandro-alex-dorenbaum-md/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Alejandro (Alex) Dorenbaum, M.D., is the Chief Medical Officer of Reneo Pharmaceuticals. Previously, he was Chief Medical Officer at Allakos, where he achieved proof-of-concept in clinical trials for novel therapeutic antibodies targeting inflammatory cells. He also served as Chief Medical Officer at Lumena Pharmaceuticals until its acquisition by Shire Pharmaceuticals. Prior to that, Alex worked at Genentech, where he was responsible for the respiratory programs for asthma and cystic fibrosis, and at BioMarin Pharmaceutical, where he conducted the clinical development of Kuvan. He began his career at Chiron Corporation, gaining broad expertise in several areas of drug development including biologics, small molecules and vaccines. Alex received his M.D. from the National Autonomous University in Mexico City. He completed his residency in pediatrics at University of Texas Health Science Center and held a fellowship in allergy and immunology at Baylor College of Medicine. He maintains an active academic position as Clinical Professor in Pediatrics at Stanford University School of Medicine, where he specializes in allergy and immunology. --- ### [Irina Anslem, MD](https://www.mitoaction.org/bios/irina-a-anselm-md/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Irina A. Anselm, MD, is Director of the Mitochondrial Program and Co-Director of the Neurometabolic Program at Boston Children’s Hospital. A pediatric neurologist with special interest in genetics and hereditary disorders, she cares for children with neurometabolic, neurodegenerative, and mitochondrial disorders. She serves as the Department of Neurology’s clinical expert for Boston Children’s Precision Medicine Service. Her research focuses on the genetics, diagnosis, and management of these disorders, which range from mild to devastating. She is the Principal Investigator of a study investigating the use of experimental drug dichloroacetate (DCA) as a treatment for chronic elevation of blood lactate levels resulting from mitochondrial disorders. She is a Co-investigator on a multicenter trial for treatment of patients with mitochondrial disorders with intractable seizures. She also is a Co-investigator on a natural history study of patients with creatine transporter deficiency. She has a special interest in disorders of neurotransmitter metabolism and works closely with a company that developed gene therapy for one of these disorders. Major publications include 35 original reports in peer-reviewed journals and 4 chapters, and she is a reviewer for the *Journal of Pediatric Neurology, Current Pediatric Reviews,* and the *Journal of Child Neurology*. **Bio Types:** Speaker --- ### [Kyle Bryant](https://www.mitoaction.org/bios/kyle-bryant/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") At age 17 Kyle Bryant was devastated when he was diagnosed with a rare, debilitating, life-shortening disease called Friedreich’s Ataxia. Walkers, wheelchairs, vision loss, hearing loss and a pre-mature death were all in his future. However, Kyle took this bleak situation and turned it into an opportunity to provide hope to the FA community and empower others, riding his recumbent trike thousands of miles and raising millions for FA research. Now, Kyle shares his outlook about how to turn adversity into opportunity in his keynote speeches. Kyle is sure to change perspectives and inspire your audience to action. Kyle graduated from University of California at Davis with a degree in Civil Engineering. Worked 5 years as an engineer before finding his calling through cycling and spreading empowerment to others. As the founder/director of [rideATAXIA](http://rideataxia.org/) for the [Friedreich’s Ataxia Research Alliance (FARA)](http://curefa.org/), Kyle and his team produce family friendly bike rides across the country to empower those with FA and raise funds for research. rideATAXIA currently has 6 locations nationwide and has raised over $7 million for FA research since 2007. Kyle’s favorite place to be is on his [Catrike](http://catrike.com/) and he is probably on the road or bike trail at this very moment. **Bio Types:** Speaker --- ### [Rebecca Ganetzky, MD](https://www.mitoaction.org/bios/rebecca-ganetzky-md/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Rebecca Ganetzky, MD is an assistant professor of pediatrics at the University of Pennsylvania and an attending physician in the division of Human Genetics at the Children’s Hospital of Philadelphia. Her research focuses on mitochondrial complex V deficiency and the development of clinical biochemical assays to improve the diagnosis of mitochondrial disease. Her clinical interests include management of lactic acidosis and other metabolic manifestations of mitochondrial disease. Dr. Ganetzky graduated from Oberlin College with a BA in Biology & Computer Science; she received her medical degree from the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University and completed a Pediatrics/Clinical Genetics combined residency and a Clinical Biochemical Genetics fellowship at the Children’s Hospital of Philadelphia. **Bio Types:** Speaker --- ### [Adam Johnson, MEd, Eds](https://www.mitoaction.org/bios/adam-johnson/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Adam Johnson is a mitochondrial disease patient & self-proclaimed DadVocate (a dad first & advocate second). He is a lifelong educator who lost his career after receiving a life-altering diagnosis in 2019. Feeling alone, afraid, & helpless, he sought connection with others & began advocating through social media, website, and blog. Most recently, Adam started and hosts a podcast series called Parents As Rare, part of MitoAction’s Energy In Action podcast. He also hosts a MitoAction monthly support call for men in the mito community. His overall motivation stems from the goal to own his story while supporting others along the way, including his children, family, the rare disease community & other parents facing similar challenges. --- ### [Madhu Davies, MD](https://www.mitoaction.org/bios/madhu-davies/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Madhu Davies is the Medical Director at Reneo Pharmaceuticals. Previously, Madhu has served many roles at companies developing medicines to patients with rare diseases. For more than 25 years, she has provided leadership and advisory services working in clinical development, safety, regulatory programs, gaining broad experience of drug development including biologics, small molecules and vaccines. Madhu has held significant pharmaceutical roles as medical director and CMO, in addition to medical affairs. Madhu trained in medicine in the United Kingdom and maintains an active academic interest as Visiting Professor at Cardiff University; she is Director of the Postgraduate Course in Pharmaceutical Medicine and has also edited or contributed to several textbooks and journals. **Bio Types:** Speaker --- ### [Eliza Kruger, MBA](https://www.mitoaction.org/bios/eliza-kruger/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Eliza Kruger is a Director of Global Health Economics and Outcomes Research (HEOR) at Ultragenyx and an expert in HEOR. She is passionate about supporting better, evidence-based decision-making in healthcare, particularly in rare diseases. She has 10 years of experience in academia, consulting and pharmaceutical industry in Singapore and the United States. She is originally from Australia, where she completed her undergraduate in Economics and Master of Health Economics. **Bio Types:** Speaker --- ### [Douglas Wallace, PhD](https://www.mitoaction.org/bios/douglas-c-wallace/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Douglas C. Wallace founded the field of human mitochondrial DNA (mtDNA) genetics and demonstrated that mtDNA variation has profound implications for human health and disease, the origins and ancient migrations of our ancestors, human and animal adaptation, and perhaps the origin of species. Starting in the early 1970s, he demonstrated that the mtDNA codes for inherited traits by developing the transmitochondral cybrid system and demonstrating that mixtures of mutant and normal mtDNAs (heteroplasmy) affect cellular phenotypes through exceeding quantitative energetic thresholds. In family studies, he showed that the human mtDNA is exclusively maternally inherited, that the mtDNA sequence is highly polymorphic, and that mtDNA variation correlates with the geographic origins of indigenous peoples. Concurrently, he helped define the genes and proteins coded by the mtDNA and demonstrate their essential role in mitochondrial energy production. From this foundation, he was the first to identify inherited mtDNA mutations that result in disease, initially the mtDNA missense mutation that causes Leber Hereditary Optic Neuropathy (LHON) and the protein synthesis mutation that causes Myoclonic Epilepsy and Ragged Red Fiber (MERRF) disease. Since then he has identified multiple pathogenic mtDNA mutations causing diseases as diverse as diabetes, cardiovascular disease, and Alzheimer disease. Currently, his web-based mtDNA information service, MITOMAP, now lists hundreds of clinically relevant mtDNA mutations. Wallace also showed that the accumulation of mtDNA mutations in tissues correlates with aging and age-related diseases. Pursuing his discovery that different continental populations have different groups of mtDNA variants, Wallace spent 20 years surveying the mtDNA variation from populations around the world. By correlating mtDNA sequence differences between populations with their geographic locations, Wallace was able to reconstruct the origin and radiation of women and thus of Homo sapiens sapiens. This revealed that humans arose in Africa about 200,000 years ago, that only two mtDNAs successfully left Africa to colonize Eurasia and the Americas, and that functional mtDNA variants arose as humans moved into a new environments. This led Wallace to propose that mtDNA variation which modifies energy metabolism is a major factor in permitting humans and other animals to adapt to new environments. Since the mtDNA trees of the species studied coalesce back to a single mtDNA, Wallace has proposed that mtDNA variation may be the factor that permits subspecies to occupy marginal environments as a precursor to speciation. Wallace was also among the first to clone nuclear DNA-coded mitochondrial genes, to show their relevance to disease, and to demonstrate that variants in nDNA and mtDNA genes could interact to markedly affect and individual’s phenotype. He also demonstrated that regional mtDNAs when moved to new environments can predispose to a wide range of complex diseases. Wallace was the first to develop mouse models of mitochondrial disease and to invent a procedure for introducing mtDNA mutations into the mouse female germline. This revealed that single mtDNA base changes were sufficient to produce the common metabolic and degenerative disease phenotypes. Thus, Wallace has provided compelling evidence that mtDNA variation is central to health and the common diseases. **Awards and Honors** – In recognition of his seminal contributions to human and mammalian genetics, Wallace was elected to membership in the National Academy of Science in 1995, the American Academy of Arts and Sciences in 2004, and the National Academy of Medicine in 2009. Wallace was awarded the William Allan Award by the American Society of Human Genetics in 1994, the Passano Award for Mitochondrial Genetics (with G. Attardi) in 2000, the Metropolitan Life Foundation Award for Medical Research in Alzheimer’s Disease also in 2000, and the Pasarow Award for cardiovascular disease in 2006. In 2012, he received the Gruber Genetics Prize, the world’s highest genetics honor, as well as the American College of Physicians Award for “Outstanding Work in Science as Related to Medicine.” In 2015, he was awarded Doctor Honoris Causa, Universitè Angers, France and was elected to the Accademia Nazionale delle Scienze detta dei XL (National Academy of Sciences of Italy). In May of 2017, he received the Franklin Institute’s prestigious Benjamin Franklin Medal for the Life Sciences “For demonstrating the maternal inheritance of mitochondrial DNA (mtDNA) in humans, using mtDNA variation to reconstruct ancient human migrations, identifying the first mtDNA mutation associated with an inherited disease, and showing that mutant mtDNA can profoundly affect the nuclear genome, causing complex diseases, thereby leading the way to therapies for those diseases and the aging process.” On June 20, 2017, it was announced that “The 2017 Paul Janssen Award for Biomedical Research is awarded to Dr. Douglas Wallace for pioneering the field of mitochondrial genetics and its application to the study of disease, aging, and patterns of human migration.” **Bio Types:** Speaker --- ### [Francesco Bibbiani, MD](https://www.mitoaction.org/bios/francesco-bibbiani/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Francesco Bibbiani is a board-certified neurologist with over 20 year experience in clinical development between the pharmaceutical industry and the Experimental Therapeutic Branch (ETB) of the National Institute of Health (NIH), where we conducted proof of concept trials in several neurological indications. In his past positions, Francesco conducted various clinical trials in Alzheimer disease, epilepsy and liver disease, all studies that led to multiple regulatory submissions and approvals with the FDA, EMA and other global regulatory agencies. Currently, he is the Vice President of Clinical Development at PTC Therapeutics, where he is the clinical lead of the DMD and mitochondrial epilepsy projects. Francesco received his MD degree with honors from the University of Pisa, Italy where he also completed his residency program in Neurology, with honors. **Bio Types:** Speaker --- ### [MitoAction](https://www.mitoaction.org/bios/mitoaction/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") MitoAction is a nonprofit organization founded by patients, parents, and Boston hospital healthcare leaders who had a vision of improving quality of life for children and adults with mitochondrial disease. The organization began in 2005 as an idea and has evolved from a small New England support group to a dynamic, active service organization helping thousands of patients and families. MitoAction’s mission is to improve the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, clinical research initiatives and by granting wishes for children affected by mitochondrial disease. --- ### [CureMito Foundation](https://www.mitoaction.org/bios/cure-mito-foundation/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The Cure SURF1 Foundation was founded in 2018 by a group of families determined to fight for our children’s lives. Each of us has a young child diagnosed with SURF1 Leigh syndrome. Each of us has been told by doctors that there is no treatment, no cure, and no hope. And each of us has refused to accept this as a final answer. In 2021, after successfully blazing the trail for SURF1 gene therapy at UTSW we decided to expand our efforts and changed the name of our foundation from the Cure SURF1 Foundation to the Cure MITO Foundation. Our primary focus is advancing research towards a cure for Leigh syndrome and eventually for mitochondrial disease as a whole. A successful outcome will mean not only hope for our own children, but also life-saving treatments for future generations impacted by this disease. --- ### [AllStripes](https://www.mitoaction.org/bios/allstripes/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") AllStripes (formerly RDMD) was co-founded in 2017 by CEO Nancy Yu and Onno Faber, a rare disease patient deeply frustrated by the drug development process. AllStripes’ mission is to unlock new treatments for people with rare disease. About 1 in 10 people have a rare disease, and half are children. As the first and only research platform dedicated to rare diseases, AllStripes makes it easy for patients to contribute to new treatment studies from home. We do the work to collect and analyze your de-identified medical records to help power faster, better drug development for your condition. The name AllStripes was inspired by the official symbol for the rare disease community, the zebra. When we come together and learn from each other’s experiences we can push for better treatments across all rare conditions. --- ### [Caroline Sanders](https://www.mitoaction.org/bios/caroline-sanders/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Cary Sanders is Senior Policy Director at the California Pan-Ethnic Health Network. Cary earned a Master of Public Policy from the University of California at Berkeley. Prior to joining CPEHN, Cary worked as a policy analyst for the California Immigrant Policy Center (CIPC) promoting pro-immigrant policies that address and respect the needs and contributions of California’s diverse immigrant communities and their families. She has also worked as Assistant Policy Director for SEIU United Health Care Workers-West representing over 150,000 health care workers in California and as Policy Director for Services, Immigrant Rights and Education Network (SIREN) in San Jose. Cary is proficient in Spanish after having lived and worked in Guatemala. --- ### [George Lippman](https://www.mitoaction.org/bios/george-lippman/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") George Lippman is a Social Justice Advocate and Chair of the City of Berkeley Peace and Justice Commission. --- ### [Christine Stanley, PhD, FACMG](https://www.mitoaction.org/bios/christine-stanley/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Christine Stanley, PhD, FACMG, is responsible for overseeing clinical genomic interpretations and regulatory compliance for the clinical laboratory. Prior to joining Variantyx, Christine held positions as Head of Clinical Laboratory at WuXi NextCODE, Chief Director of Clinical Genomics at Courtagen Life Sciences and Genetics Director at Athena Diagnostics. She maintains a part-time appointment as Clinical Laboratory Director of QnA Diagnostics. Christine holds a Bachelor’s degree in Genetics from Texas A&M University and a PhD in Human Genetics from the Medical College of Virginia with fellowship training at Boston University in clinical molecular genetics. She is a diplomate of the American Board of Medical Genetics and Genomics and a Fellow of the American College of Medical Genetics and Genomics. **Bio Types:** Speaker --- ### [Beth Alison Maloney, Esq](https://www.mitoaction.org/bios/beth-alison-maloney/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Beth Alison Maloney** began her legal career in the entertainment industry in Los Angeles. She is nationally known for her unique expertise in medical kidnapping cases and her ability to obtain press coverage of abusive practices by hospitals, doctors, and child protection services. Ms. Maloney is the author of three books that have substantially impacted the fields of medicine and the law, including *Saving Sammy* and *Childhood Interrupted*. Her most recent book, *Protecting Your Child from the Child Protection* *System*, is based on over 20 years of experience as a lawyer, guardian *ad litem*, and nationwide consultant in the field of child protection law. **Bio Types:** Speaker --- ### [Matthew Klein, MD, MS, FACS](https://www.mitoaction.org/bios/dr-matt-klein/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Matthew B. Klein, MD, MS, FACS is Chief Development Officer at PTC Therapeutics, Inc. Prior to joining PTC, Dr. Klein was CEO and Chief Medical Officer of BioElectron Technology Corporation, a biotechnology company focused on development of redox active small molecules for mitochondrial disease and related disorders of oxidative stress. Prior to joining BioElectron, Dr. Klein was the Auth-Washington Research Foundation Chair of Restorative Burn Surgery at the University of Washington. Dr. Klein completed his undergraduate degree at the University of Pennsylvania where he graduated summa cum laude and Phi Beta Kappa, and received his MD degree with honors from Yale University. **Bio Types:** Speaker --- ### [Various Speakers](https://www.mitoaction.org/bios/various-people/) **Published:** October 11, 2023 **Author:** Russell Weller **Bio Types:** Speaker --- ### [Charles Mitter, PhD](https://www.mitoaction.org/bios/charles-mitter/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Charles Mitter, Ph.D. is an Emeritus Professor at the College of Computer, Mathematical and Natural Sciences, University of Maryland; Former Chair, Department of Entomology --- ### [Bridgette Reineking, MS, RDN, CD](https://www.mitoaction.org/bios/bridget-reineking/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Bridget Reineking, MS, RDN, CD** is the Senior Director of Global Metabolic Nutrition Programs at Ultragenyx Pharmaceutical, working within the pharmaceutical industry for almost a decade. She has two decades of experience and several publications in the area of inborn errors of metabolism, beginning her passion as a Nutrition Assistant at the Waisman Center, while attending the University of Wisconsin-Madison to receive her undergraduate degree in dietetics. Bridget went on to complete her master’s degree at Case Western Reserve University and practiced clinically at Children’s Hospital of Wisconsin-Milwaukee before joining industry. **Bio Types:** Speaker --- ### [Sylvia Mills](https://www.mitoaction.org/bios/sylvia-mills/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Sylvia Mills** is the Director of Patient Services, Metabolic Franchise at Ultragenyx and has over two decades of patient advocacy and pharmaceutical reimbursement experience. She has worked with diverse patient populations with rare diseases and is an expert in navigating the reimbursement process. Sylvia is committed to providing exceptional service to patients and healthcare providers by helping ensure access to treatment and lowering barriers to reimbursement. --- ### [Kathryn Jordan Kemere, MD](https://www.mitoaction.org/bios/jordan-kemere/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Jordan Kemere is an internal medicine physician and assistant professor at Baylor College of Medicine where she provides primary care to adults with Intellectual and/or Developmental Disabilities (IDD). She is also the program director of the Adult Developmental Medicine Fellowship and passionately educates many healthcare professional learners in providing high quality healthcare to people with IDD. Dr. Kemere also works closely with partners at Texas Children’s Hospital to improve transition from pediatric to adult Healthcare. **Bio Types:** Speaker --- ### [Dave Keane](https://www.mitoaction.org/bios/dave-keane/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Dave Keane** has worked in the Genetics testing field since 1998. He became interested in Mitochondrial Disease in 2004 and has attended almost 20 UMDF symposia. His career has taken him from Athena Diagnostics, Transgenomic, GeneDx and now Variantyx. He has attended approximately 50 Mito grand rounds presented by Bruce Cohen, Sumit Parikh, Fran Kendall, Bob Naviaux, Amy Goldstein and others. He works closely with the UMDF and MitoAction to facilitate genetic testing for hundreds of Mito patients and has always functioned from a “the patient comes first” perspective. **Bio Types:** Speaker --- ### [Marcelle Longlade](https://www.mitoaction.org/bios/marcelle-longlade/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Marcelle Longlade is a yoga teacher, biomedical engineer, and devoted entrepreneur. She is a passionate advocate for people living with chronic conditions and disabilities because Marcelle is one of those people too. She has had a life-long journey battling complex health conditions, mainly FMF, Narcolepsy Type 1, and hEDS. Marcelle created the Chronically Surviving advocacy blog, where she shares stories from her life. As a result, others feel open to sharing their narratives to help spread awareness and develop a sense of community and belonging. The second part of her platform and business is called Asintmah Healing. She offers physical, emotional, spiritual, and practical support using a holistic model of care, specifically for those living with chronic health conditions. **Bio Types:** Speaker --- ### [Emil Kakkis, MD, PhD](https://www.mitoaction.org/bios/dr-emil-d-kakkis/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Dr. Emil D. Kakkis, M.D., Ph.D.** is Chief Executive Officer, President and Founder of Ultragenyx Pharmaceutical. Over the last 25 years, Dr. Kakkis is best known for his work developing novel treatments for rare diseases and advancing the cause of rare disease treatment through advocacy on policy issues by founding and supporting the EveryLife Foundation for Rare Diseases. In 2019, he received BIO’s Henri Termeer Visionary Leadership award for this work and a Lifetime Achievement Award from the National MPS Society. Dr. Kakkis began his academic research at Harbor-UCLA developing an enzyme replacement therapy for the rare disorder MPS I. After joining BioMarin in 1998, he guided the development and approval of two more treatments for rare diseases, MPS VI and PKU and has contributed to the development of approved or development stage products of four other rare diseases (CLN2, MPS-IVA, PKU, Achondroplasia). Dr. Kakkis went on to found Ultragenyx in 2010 to focus on developing as many rare and ultra- rare disease therapeutics as possible. The company went public in January 2014 (NASDAQ: RARE) and has built a diverse portfolio of approved therapies and product candidates aimed at addressing diseases with high unmet medical need and clear biology for treatment, for which there are typically no approved therapies treating the underlying disease. Since its founding, Ultragenyx has received approvals for XLH, TIO, MPS VII, and LC-FAOD. Dr. Kakkis graduated from Pomona College, magna cum laude and received combined M.D. and Ph.D. degrees from the UCLA Medical Scientist Program. He completed both a Pediatrics residency and Medical Genetics Training Fellowship at Harbor-UCLA Medical Center. **Bio Types:** Speaker --- ### [Jessica Riviere, MHS](https://www.mitoaction.org/bios/jessica-riviere/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Jessica Riviere, MHS** leads Global Patient Advocacy and Patient Engagement at Ultragenyx, where she and her passionate team forge strategic alliances with diverse patient advocacy groups to understand patient and caregiver perspectives across the drug discovery continuum. Her passion is building capacity that enables groups to be inform drug discovery, drive disease awareness campaigns, support equitable access to care and treatment and co-create meaningful support services for people impacted by disease and their caregivers. Early in Jessica’s career she worked on advancing the Clinton Healthcare Plan as a legislative aide to U.S. Senator Edward Kennedy. It was during her tenure at Kennedy’s office that Jessica came to appreciate the power of communities to make change and impact public policy for the greater good. Jessica’s advocacy experience spans multiple rare diseases, diabetes, HIV/AIDS and immunology with several companies including Biogen, AbbVie, Bristol Myers Squibb and Novo Nordisk. Jessica holds a BA in Psychobiology from Mount Holyoke College and a Masters of Health Science in Health Policy from the John Hopkins Bloomberg School of Public Health. **Bio Types:** Speaker --- ### [Meena Sethuraman](https://www.mitoaction.org/bios/meena-sethuraman/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Meena Sethuraman** is a second-year medical student at the University of Pittsburgh School of Medicine. She is in the Physician Scientist Training Program, a 5-year program for medical students interested in basic science and translational research. Her research is with Dr. Jerry Vockley, studying disorders of fatty acid oxidation. Meena previously received her B.S. in Neurobiology at the University of Washington. Her undergraduate and post-baccalaureate research was in gene therapy for atherosclerosis. **Bio Types:** Speaker --- ### [Christy Yang, MS](https://www.mitoaction.org/bios/christy-yang-m-s/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Christy Yang**, M.S., is a Director in Global Health Economics and Outcomes Research at Ultragenyx Pharmaceutical Inc., a Bay Area, California company dedicated to developing therapeutics for rare and ultra-rare diseases. She has 9 years of experience in real world data analytics and evidence generation. Before joining Ultragenyx, Christy was a Senior Data Scientist at Genentech and healthcare consultant at IQVIA. She has built extensive knowledge and hands-on experience in claims, electronic medical records, and survey data analyses of various disease areas. Christy received her M.S. degree from Harvard School of Public Health. **Bio Types:** Speaker --- ### [Beth Folcher](https://www.mitoaction.org/bios/beth-folcher/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Beth Folcher** received her M.Ed. In Educational Leadership from Lehigh University in 2002. She had been teaching high school history in the Pennsylvania’s public school system for over 24 years, working with all levels of special needs kids. In 2005, her son Luke was born and diagnosed with LCHAD via NBS. **Bio Types:** Speaker --- ### [Richard Boles, MD](https://www.mitoaction.org/bios/richard-g-boles-m-d/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Richard G. Boles, M.D.** completed medical school at UCLA, a pediatric residency at Harbor-UCLA, and a genetics fellowship at Yale. For over two decades, Dr. Boles’ clinical and research focus has been on changes in genes involved in energy metabolism, and more recently ion channels, and their effects on the development of common neurodevelopmental and functional disorders. Examples include autism, pain syndromes, chronic fatigue, cyclic vomiting, intestinal dysmotility/failure, and depression. He has over 80 published papers, mostly in mitochondrial medicine. He lives in the Los Angeles area. For 20 years, Dr. Boles was a faculty member at the Keck School of Medicine at USC and a practicing medical geneticist and metabolic specialist at Children’s Hospital Los Angeles. Dr. Boles became involved in genetic testing in order to facilitate the translation of the vast amounts of acquired genetic knowledge into applications that improve routine medical care, and was a Medical Director of Courtagen and Lineagen in the past. At present, Dr. Boles is the Director of the NeuroGenomics Program at Neurabilities () in Voorhees, NJ, in which he consults on patients via telemedicine. About half of the patients he currently sees as a physician have one or more functional conditions, especially cyclic vomiting syndrome, other forms of complex migraine, and/or chronic fatigue syndrome. Most of the other half have an autistic spectrum disorder or related neurodevelopmental conditions. His clinical practice is devoted to using information, including genetic testing, to guide options for therapy. In addition to California and New Jersey, he is licensed in Arizona, Florida, and Pennsylvania, but with the current pandemic he can consult via telemedicine with patients anywhere in the USA. As part of the Peer-To-Peer Program, Dr. Boles can assist physicians to order, understand, and act on genetic testing data both nationwide and internationally. Dr. Boles also does legal consulting, especially for those with multiple functional conditions that others are considering fictitious disorder/Munchausen-by-proxy/medical child abuse. Finally, he is the primary designer of EnergyNeeds® and SpectrumNeeds®, nutritional products with 40 and 33 active ingredients, respectively, designed for individuals with neurodevelopmental and functional disorders, with an emphasis on assisting mitochondrial function ([www.neuroneeds.com](http://www.neuroneeds.com/)). **Bio Types:** Speaker --- ### [Gena Padgett, LP](https://www.mitoaction.org/bios/gena-padgett/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Gena Padgett** is a licensed school psychologist and teacher for the Deaf and hard of hearing in the state of Indiana. She completed her Bachelor’s degree in Deaf Education at Converse College in Spartanburg, South Carolina and received her Master’s degree in Linguistics from Gallaudet University in Washington, DC. Gena proceeded to Indiana State University in Terre Haute, Indiana where she received her training in School Psychology. She has been an educator for over 25 years with a specialty in evaluating students with low incidence disabilities and health conditions. **Bio Types:** Speaker --- ### [Tobin Chettiath, PharmD, MBA](https://www.mitoaction.org/bios/tobin-chettiath/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Tobin Chettiath**, PharmD, MBA is currently Senior Medical Director, Metabolic, North America at Ultragenyx Pharmaceutical and has been with the company since 2017. He has also served as Director of Medical Science Liaisons, Metabolic, North America at Ultragenyx. Prior to joining Ultragenyx, Tobin has spent the last 14 years working on rare diseases in the plasma pharmaceutical industry, including with companies such as Bayer Biologicals (later Talecris and now part of Grifols), Octapharma, and Baxter Bioscience (later Baxalta, Shire and now Takeda). Tobin received a bachelor degree in Biochemistry and Cell Biology from the University of California, San Diego, a Doctor of Pharmacy degree from the University of Illinois in Chicago, and a Master in Business Administration degree from The George Washington University. **Bio Types:** Speaker --- ### [Kristin Voorhees, MA](https://www.mitoaction.org/bios/kristin-voorhees/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Kristin Voorhees is an Associate Director of Patient Advocacy at Ultragenyx Pharmaceutical where she has the honor of representing the experiences of rare disease communities and helping to integrate the perspectives of patient and families into company and program decision-making. Kristin has more than 10 years of experience in spearheading patient engagement and patient-focused programs in close collaboration with patients, caregivers, clinicians, researchers, and the biopharmaceutical and diagnostics industries. Kristin holds a BA in Communication Studies from James Madison University and a Master of Health Communication from Emerson College and Tufts School of Medicine. **Bio Types:** Speaker --- ### [Laura Pisani-Betancourt, MD](https://www.mitoaction.org/bios/laura-pisani-betancourt/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Laura Pisani-Betancourt**, MD is the Medical Director of Global Clinical Development at Ultragenyx Pharmaceutical. **Bio Types:** Speaker --- ### [Mark Tarnopolsky, BPE, MD, PhD](https://www.mitoaction.org/bios/dr-mark-tarnopolsky/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Tarnopolsky is a neuromuscular and neurometabolic clinician-scientist who received an MD and PhD (Cell Biology and Metabolism) from McMaster University. He currently holds an endowed chair from McMaster Children’s Hospital Foundation in the area of neuromuscular and neurometabolic genetic disorders and follows over 500 patients with primary mitochondrial disorders. He has published over 500 peer reviewed papers and has an *h-*index of 133. His research focuses on pharmacological, nutraceutical and exercise therapies for neuromuscular and neurometabolic disorders, aging, obesity and other disorders that affect the mitochondria and muscle function. He is the founder, CEO and CSO of Exerkine Corporation which is a bio-technology/nutraceutical company developing therapies for aging, obesity, muscular dystrophy and mitochondrial disorders. **Bio Types:** Speaker --- ### [Laura Pisani, MD](https://www.mitoaction.org/bios/dr-laura-pisani/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Laura Pisani, Medical Director in Global Clinical Development at Ultragenyx Pharmaceutical, is a passionate rare disease expert and advocate, bringing her clinical and academic background to clinical development. Laura received her BS in Medical Biotechnology and her MD from the Federico II University, Naples, Italy, where she was first exposed to the world of rare diseases and clinical trials by working in Niemann-Pick C disease. She went on to residency training in Pediatrics at Northwell Health, followed by fellowship training in Medical Genetics at the Icahn School of Medicine at Mount Sinai, both in New York. After working in Columbia University as a metabolic geneticist, she moved back to Northwell Health, where she successfully opened and directed a new New York state inherited metabolic disorder newborn screening center. She then joined Ultragenyx to further her commitment to help bring novel therapeutics to children and adults with rare disorders. She is currently an MBA Healthcare student at UNC Fayetteville State. She lives in the Bay Area, which she loves hiking, with her husband Joey and her daughters Freya and Arwen. She is an avid long distance runner, travel and languages enthusiast and big sci-fi and fantasy fan, who can be spotted on a weekend at the start line of a marathon, as well as at a Comic Con! **Bio Types:** Speaker --- ### [Casey Burns, RD, CSP, CNSC](https://www.mitoaction.org/bios/casey-burns/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Casey Burns has been a metabolic dietitian at Children’s Hospital Colorado for 15 years. She has co-authored many patient education materials and articles on metabolic disorders and loves working hands-on with patients to help them better understand their diagnosis. **Bio Types:** Speaker --- ### [Emily Holl](https://www.mitoaction.org/bios/emily-holl/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Emily Holl is the Director of The Sibling Support Project at Kindering, the first national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special developmental and health concerns. Emily is a social worker, author, and trainer who has provided workshops and groups for siblings and families, presented extensively on sibling issues, and has conducted and published sibling research. A sibling, and board member of the national Sibling Leadership Network, Emily has written about her experiences in blogs, magazines and books such as “Thicker than Water.” She was a co-editor of “The Sibling Survival Guide: Indispensable Information for Adult Brothers and Sisters of People with Disabilities,” published by Woodbine House in 2014. Emily earned a Bachelor of Arts from the University of Massachusetts, a Master of Fine Arts from Columbia University, and a Master of Social Work from Hunter College at the City University of New York. Learn more at [www.siblingsupport.org](http://www.siblingsupport.org/). **Bio Types:** Speaker --- ### [Pamela Lane, MSW, LCSW](https://www.mitoaction.org/bios/pamela-lane/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Pam received her BSW from East Tennessee State University and her MSW from University of South Carolina. She has been working as a licensed clinical social worker for over 30 years serving children and adults in medical, mental health, and community settings. She has provided trainings for medical staff, school staff, nursing students, and MSW students on numerous topics including families in crisis, complex family systems, child abuse, suicide prevention, crisis intervention, behavioral health, child development and assessment, and professional boundaries. Her experience includes working with individuals and families across the lifespan including preschoolers, school aged children, teens, and adults in mental health services and has provided individual, family, and group therapies. She has been active with community advocacy with training and consultations for families and other community partners. **Bio Types:** Speaker --- ### [Marie Norris, MS, RDN, CD, CNSC, PhD](https://www.mitoaction.org/bios/marie-norris/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Marie Norris is a metabolic dietitian and doctoral student at the University of Utah investigating the way a lipid, ceramide, contributes to disease pathogenesis in fatty acid oxidation disorders, which is a new and exciting avenue of sphingolipid research. Mounting evidence reveals that elevated ceramides contribute to cardiomyopathy and heart failure in both humans and rodents, and that cardiac function improves with ceramide depletion. The overarching goal of her doctoral research is to identify novel mechanisms by which ceramides contribute to cardiomyopathy pathogenesis and heart failure progression in patients with fatty acid oxidation disorders. Specifically, she critically tests whether ceramides are necessary and sufficient to induce cardiac hypertrophy, fibrosis, apoptosis, and mitochondrial dysfunction in animal models of fatty acid oxidation disorders. She was recently awarded with the University of Utah Graduate Student Travel Award to present her research at the Genetic Metabolic Dietitians International Conference. Prior to starting her PhD, she was a metabolic dietitian at Seattle Children’s Hospital where she carefully crafted complex nutrient prescriptions for each patient based on clinical, biochemical, social, and physical parameters. In this role, she also actively participated in clinical research, published papers outlining nutrition therapy for fatty acid oxidation disorders, published a paper detailing nutrition-specific considerations to make when using Triheptanoin, and published a study of carnitine deficiency among critically ill patients receiving ECMO therapy. With a particular fondness for lipid metabolism, she grew especially passionate about improving care for patients with fatty acid oxidation disorders and decided to pursue a PhD. She is committed to these patients and determined to identify novel therapeutic targets for them. **Bio Types:** Speaker --- ### [Eric Goetzman, PhD](https://www.mitoaction.org/bios/dr-eric-goetzman/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Following his undergraduate studies at the University of Minnesota-Morris, Eric Goetzman obtained a PhD in Medical Genetics from the University of Alabama-Birmingham, where he investigated fatty acid and metabolism and rare mitochondrial disorders. After completing post-doctoral training at the Mayo Clinic and UPMC Children’s Hospital of Pittsburgh, he joined the research faculty of the University of Pittsburgh School of Medicine in 2006. He is currently an Associate Professor of Pediatrics where he continues to research various aspects of energy metabolism, mitochondrial function, and rare metabolic diseases. **Bio Types:** Speaker --- ### [Michael Decker](https://www.mitoaction.org/bios/dr-michael-decker/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Michael J. Decker, MD, FAAP, is medical director of the Complex Care Clinic at UPMC Children’s Hospital of Pittsburgh and an assistant professor of pediatrics at the University of Pittsburgh School of Medicine. Dr. Decker received his medical degree from the University of Minnesota School of Medicine, Minneapolis. He then completed his pediatrics residency and fellowship in pediatric emergency medicine at UPMC Children’s Hospital of Pittsburgh. Following completion of his fellowship he spent 10 years in private practice with CCP-Pittsburgh Pediatrics. In 2006, Dr. Decker returned to UPMC Children’s as a member of the Paul C. Gaffney Diagnostic Referral Service, now known as the Paul C. Gaffney Division of Pediatric Hospital Medicine. In July 2020, he took over as director of the Complex Care Clinic. Dr. Decker has always enjoyed caring for and advocating for children with medical complexity and special health care needs. His time in primary care and as a hospitalist at UPMC Children’s have afforded him with the skills and experience to care for this unique population of patients. He is a fellow and a member of the section of Pediatric Hospital Medicine for the American Academy of Pediatrics. He is also a member of the Pennsylvania Medical Society. Outside of the hospital, Dr. Decker enjoys anything that includes his family and sports. View the full list of Dr. Decker’s publications on PubMed. ([https://pubmed.ncbi.nlm.nih.gov/?term=Decker+MJ&cauthor\_id=12524574](https://pubmed.ncbi.nlm.nih.gov/?term=Decker+MJ&cauthor_id=12524574)) **Bio Types:** Speaker --- ### [Peter McGuire, MS, MMBCh](https://www.mitoaction.org/bios/dr-peter-mcguire/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Peter McGuire received his bachelor’s in psychology from Villanova University, a master’s in microbiology and immunology from New York Medical College, and a [M.B.B.Ch](http://m.b.b.ch/). with honors (equivalent to an M.D.) from the Royal College of Surgeons in Ireland. After completing a combined residency in pediatrics and medical genetics at Mount Sinai Medical Center, he was awarded a fellowship in biochemical genetics from the American College of Medical Genetics and Genzyme. After completing his training, he remained as a junior faculty member in the Program for Inherited Metabolic Diseases at Mount Sinai. Dr. McGuire is board certified in Pediatrics, Clinical Genetics and Biochemical Genetics. In 2010, Dr. McGuire moved to the National Institutes of Health (NIH) to join the Physician Scientist Development Program to accelerate his translational research program. He was appointed to the position of tenure track investigator in 2016. Throughout his career, Dr. McGuire has been focused on improving the care of patients with disorders of mitochondrial metabolism. By combining his training in immunology and biochemical genetics, he fashioned a translational research program to understand host-pathogen interactions in disorders of mitochondrial metabolism. His NIH Clinical Center protocols, the [**NIH MINI Study**](https://www.genome.gov/Current-NHGRI-Clinical-Studies/Metabolism-Infection-Immunity-Study-MINI), is the first organized effort to study viral infection, immune function, and disease progression in patients with disorders of mitochondrial metabolism. **Bio Types:** Speaker --- ### [Marguerite Duane, MD, MHA, FAAFP](https://www.mitoaction.org/bios/dr-marguerite-duane/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Marguerite Duane, a board certified family physician, is co-founder and Executive Director of FACTS – the Fertility Appreciation Collaborative to Teach the Science, an organization dedicated to educating healthcare professionals and students about scientifically valid natural or fertility awareness based methods (FABMs). She also serves as an Adjunct Associate Professor at Georgetown University, where she directs an elective on FABMs and their role in women’s health and family planning. Dr. Duane see patients with Modern Mobile Medicine, a direct primary care house-calls based practice in Washington, DC and is currently completing a primary care research fellowship at the University of Utah. Dr. Duane received her M.D. degree from the State University of New York at Stony Brook and completed her Family Medicine residency at Lancaster General Hospital in Pennsylvania. She received a Bachelor of Science with Honors and a Master of Health Administration degree from Cornell University. Dr. Duane is trained as a Creighton, FEMM and NeoFertility Medical consultant, and a TeenSTAR educator. She has published articles on the effectiveness of FABMs and the use of apps for tracking fertility. Dr. Duane balances her career as a teacher and Family Physician, with her role as a mother and wife. She is married to a fellow family physician, Dr. Kenneth Lin, and they are the parents of 4 young children. **Bio Types:** Speaker --- ### [Jan Smeitink, MD, PhD](https://www.mitoaction.org/bios/dr-jan-smeitink/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Jan Smeitink obtained his training in Pediatrics at the Radboud university medical center, Nijmegen, The Netherlands whereafter he completed a 3 year training in metabolic disease at the Wilhelmina Children’s Hospital, Utrecht, The Netherlands. From 1996 until May 2020 he was the Head of the Department of Metabolic Diseases at the Radboud university medical center with a special interest in the study of mitochondria in health and disease. Since May 2020 he is fully employed as Chief Executive Officer of Khondrion BV. Smeitink has more than 25 years of experience in patient care, diagnostics, counselling and research in the field of primary mitochondrial disease. In 1996 he founded the Radboud Centre for Mitochondrial Medicine. He has initiated, supervised and collaborated in many national and international research programs, and has published over 400 peer reviewed scientific articles (including N Eng J Med, Science, Nature Genetics, Cell Metabolism, American Journal of Human Genetics, Lancet Neurology: H-index above 80). He has been invited to give more than 100 lectures including many key-lectures, and seminars all over the world and has organized key meetings and courses on mitochondrial medicine that significantly contributed to the continuing success of the field (Euromit conferences, Frontiers in Bioenergetics, Systems Biology of Bioenergetics, focused courses on Mitochondrial Medicine). Smeitink received the Prinses Beatrix Foundation Jubilee Award (2006) for his research on mitochondrial medicine and an Honorary Membership of the Pediatric Neurology association of Hong Kong (2011). He has given numerous interviews to national and international newspapers, radio stations and television. From 2008-2014 he was Director of the Institute of Genetic and Metabolic Disease one of the leading research institutes of the Radboud university medical center. From 2010 – 2015 he was chairman of the Centre for Systems Biology and Bioenergetics. Prof. Dr. Smeitink has obtained several major grants and was the coordinator of the 6th Framework Program EUMITOCOMBAT (2004-2008) funded by the European Commission and the ongoing KHON2TREAT 7th Framework Program Grant. Four of his former students have become full professor at international institutes, while most others have enrolled in research staff positions. In October 2013 he was awarded a membership of the Academia Europaea. In April 2016 he was honoured with the highly prestigious Knight in the Order of the Dutch Lion in view of his services to medical research. In September 2019 he was honoured with the RCMM Achievement Award in view of his contributions to mitochondrial medicine. Jan Smeitink has extensive collaborations with many mitochondrial patient organisations and researchers from all over the world. Jan is the founding CEO of the clinical stage, pharmaceutical company, Khondrion ([www.khondrion.com](http://www.khondrion.com)), which became fully operational in November 2012. The company’s lead product sonlicromanol is currently in phase 2b and long-term open label extension studies in adults with MELAS spectrum disorders. Recently, the first children were enrolled in a phase 2 trial. **Bio Types:** Speaker --- ### [Mark Korson, MD](https://www.mitoaction.org/bios/dr-mark-korson/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Mark Korson graduated in medicine from the University of Toronto and completed a pediatric residency at Toronto’s Hospital for Sick Children, followed by a genetics/metabolism fellowship at Boston’s Children’s Hospital. He directed the metabolic clinics at Boston Children’s Hospital until 2000 and across town at Tufts Medical Center until 2014. He co-founded and co-directs the North American Metabolic Academy, the premier educational experience around metabolic disease for genetics trainees on this continent. In 2017, he joined VMP Genetics as Director of Education and Physician Support Services, providing remote assistance to clinicians caring for patients with proven or suspected metabolic disease. He also directs a very active education program that addresses knowledge gaps among non-genetic physicians, as well as non-physician health professionals who work in metabolic clinics but who have never had any formal training in this specialty. He initiated and oversees at VMP Genetics the Patient-Teacher Registry and Patient-Teacher Video Catalog, with the aim of ensuring that the patient voice plays a bigger role in the education of health professionals. Regionally, he is on the board of the New England Regional Genetics Network, and as a founding board member of Rare New England, hosts their annual Rare Disease Day Speakers Series in New England and their online Genetics Career Fairs. **Bio Types:** Board of Directors, Medical Advisory Committee, Speaker --- ### [Allen Williams](https://www.mitoaction.org/bios/allen-williams/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Allen Williams joins MitoAction with extensive experience in business and software development. He is currently the Product Director for Dualboot Partners, a business and software development company focused on product innovation, strategy, design, front and backend development, fractional CTO, QA, and PMO. Prior to joining Dualboot, Allen served as Director of Business Development for Heartland Global, which acquired Springboard Retail, where he played an integral role in launching the retail industries leading POS system, helping to scale the company from $0 – $5M in annual revenue. Allen earned his B.S. from Bentley University. He lives with his wife and children in Hingham, MA. **Bio Types:** Board of Directors --- ### [Natashia Cheatham](https://www.mitoaction.org/bios/natashia-cheatham/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Natashia Cheatham is a diversity trained leader with national experience across all spectrums of healthcare, finance, human capital, compliance, and business development avenues. She served as Global Operations Leader of Global Health Management, LLC overseeing a portfolio of initiatives in home health, hospice, therapy operations, and medical clinics, CEO of Townsend Addiction and Treatment Centers and most recently Regional Director of Operations at Behavioral Health Groups in Baton Rouge, LA. Natashia is a member of the American College of Healthcare Executive (FACHE Fellowship) and Chairperson for the Behavioral Health Group Diversity and Inclusion Committee. She earned her B.S. from Louisiana State University, and her Master’s Degree from Mississippi College. Natashia lives in New Orleans, LA. **Bio Types:** Board of Directors --- ### [Andrew Nierenberg, MD](https://www.mitoaction.org/bios/andrew-nierenberg/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Andrew A. Nierenberg, M.D. graduated from the Albert Einstein College of Medicine of Yeshiva University, Bronx, NY, did his residency in psychiatry at New York University/Bellevue Hospital, and studied clinical epidemiology at Yale University as a Robert Wood Johnson Clinical Scholar. Dr. Nierenberg then joined the faculty at Harvard Medical School, first at McLean Hospital in Belmont, Massachusetts and then at Massachusetts General Hospital (MGH), where he holds his current positions. He is also Honorary Professor in the School of Medicine, Faculty of Health at Deakin University, Geelong Australia and the Honorary Skou Professor of Psychiatry at Aarhus University in Denmark. Dr. Nierenberg has published over 485 papers and has been listed in *The Best Doctors in America* for the treatment of mood and anxiety disorders in every edition since 1994. In 2000, he was awarded the Gerald L. Klerman Young Investigator Award and in 2014 the Gerald L. Klerman Senior Investigator Award by the Depression Bipolar Support Alliance. In 2013, Dr. Nierenberg was awarded the prestigious Brain and Behavior Research Foundation Colvin Prize for outstanding achievement in mood disorders research. In 2014, he was awarded the Mentorship Award for Exceptional Mentorship in the Research Arena at MGH. In 2014, 2015, 2016, and 2017, he was listed among the World’s Most Influential Scientific Minds by Clarivate Analytics in recognition of ranking among the top 1% of researchers for most cited papers in psychiatry worldwide with over 25,000 citations and an h-factor of 79. Dr. Nierenberg’s primary interest is innovative treatments for bipolar disorder. He lectures extensively, both nationally and internationally, teaches, supervises, maintains an active clinical practice, consults to industry, and conducts clinical trials funded by federal, foundation, industry, and philanthropic sources. Dr. Nierenberg is the deputy editor of Depression and Anxiety and editor of *Psychiatric Annals*. He is a member of the editorial boards of over 15 journals including the *Journal of Clinical Psychiatry, Journal of Clinical Psychopharmacology, Journal of Affective Disorders, Australian New Zealand Journal of Psychiatry, and Bipolar Disorders* and serves as a peer reviewer for over 35 psychiatric journals. --- ### [Jenevieve Woods](https://www.mitoaction.org/bios/jenevieve-woods/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Contact Jenevieve at . **Bio Types:** Staff --- ### [Soozi Scheller, MS, MTS, FCP](https://www.mitoaction.org/bios/soozi-scheller/) **Published:** October 11, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Since 2019, Soozi has been doing Program Support for MitoAction through patient advocacy and research. She has also taken on the role of MitoSocial Moderator since MitoSocials become virtual. Soozi is a graduate of UC Berkeley in Conservation and Resource Studies. First a botanist, then a special education teacher, Soozi decided to earn a master’s to better support children with disabilities. She also trained as a practitioner in the medical model for natural family planning. She found MitoAction in 2012 when she started having pronounced mito symptoms and called Mito 411 for help. Soozi is a Biotechnology/Ethics graduate student now at John Paul II Institute in Washington, D.C. and she specializes in mother-child health studying recent breakthroughs in understanding the woman’s cycle in order to understand women’s health which includes mitochondria. Soozi has three children, one lost to a miscarriage. Service dogs have played a positive role in her family. “My mother had mitochondrial-disease-like symptoms before they were recognizable. She was very disabled by them. I am so grateful to have found MitoAction when I needed help. I am happy to offer support especially when people feel isolated, baffled, or defeated by the disease. We are here to accompany you in your journey, however unique it may be.” Contact Soozi at . **Bio Types:** Staff --- ### [John Kelly](https://www.mitoaction.org/bios/john-kelly/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") John Kelly is the former Vice President / Senior Director of Government Affairs and Public Policy for SourceAmerica. In his roles with SourceAmerica over the past 19 years, John conceived, staffed and sponsored multiple nationwide initiatives in partnership with federal and state agencies, state, disability organizations, educational institutions, philanthropic entities and impacted individuals to map the future of disability across multiple sectors. John developed passed legislation for protection and preservation of thousands of jobs, advocated for community members with significant and life-impacting disabilities and averted damaging legislation and converted it to a positive outcome through support from key members of Congress and by securing a Statement of Administration Policy from the White House. John serves on the Board of Directors of Workability International and is a member of the Board for the Virginia Board for People with Disabilities. John earned his B.S. from Mary Washington College. John lives in Virginia with his wife and children. **Bio Types:** Board of Directors --- ### [Paul Harty](https://www.mitoaction.org/bios/paul-harty/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Paul Harty is the Chief Solutions Officer of Sevenstep RPO, a Motion Recruitment Partners company. Sevenstep is a leading provider of large-scale hiring solutions, using a unique team-based model of RPO services delivery. Paul is responsible for the companies strategic solutions suite of services and leads the innovation team that drives new technology approaches to solve clients most urgent talent recruiting and talent management strategies. Prior to joining Sevenstep, Paul spent 15 years building and managing a successful technology recruiting and placement businesses. He lives in the Boston area with his wife and children. His son, Matthew, died of Pyruvate Dehydrogenase Deficiency at the age of 8. While searching for answers for his son’s disabilities and managing through a long diagnosis process, Paul discovered MitoAction as a strong support system and a way to gain knowledge about Mito. Paul became an active member to guarantee that other caregivers or patients who are faced with Mito have access to continued support and knowledge that is so necessary when dealing with rare disease. **Bio Types:** Board of Directors --- ### [Jessica Fein](https://www.mitoaction.org/bios/jessica-fein/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Jessie is the vice president of corporate marketing and creative services for Bright Horizons, the world’s leading provider of employer-sponsored child care and work/life solutions. She is a former opinion columnist for the Sunday Boston Globe and is the author of “Moving On: How to Make the Transition from College to the Real World.” Prior to working at Bright Horizons, Jessie ran her own writing business, Fein Print. Jessie is the mom of three incredible children, Jonah, Dalia, and Theo. Dalia has the mitochondrial disease MERRF Syndrome. **Bio Types:** Board of Directors --- ### [Saad Dinno, RPh, FIACP, FACA](https://www.mitoaction.org/bios/saad-dinno/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Saad Dinno, RPh, FIACP, FACA, has given lectures on mitochondrial disease across the country as well as in Australia. His staff works with patients and their providers on insurance coverage issues, compliance, taste, dosage form, counseling on the medications being dispensed, and other relevant Mito information and general questions. He is a member of the Massachusetts Independent Pharmacy Association, Massachusetts Pharmacist Association, National Community Pharmacist Association, and International Academy of Compounding Pharmacists. He is the past president of the Massachusetts Independent Pharmacy Association and previously served on the Professional Compounding Centers of America (PCCA) Advisory Board. Saad has received numerous awards, including being named the Margaret Bauman Outstanding Medical Professional for his work serving the autism community. He was also named Massachusetts Innovative Pharmacist of the Year, PCCA Pharmacist of the Month, and received a Fellowship distinction from the International Academy of Compounding Pharmacists. Additionally, Saad serves on Emerson Hospital’s Care Transition Collaborative Committee, the Eliot Community Human Rights Committee, Cardinal Distribution East Advisory Board and the MitoAction Marcel Way Fund Committee. He received his Bachelor of Science degree in pharmacy from the Massachusetts College of Pharmacy and Health Sciences. **Bio Types:** Board of Directors --- ### [Jeannie Freeman](https://www.mitoaction.org/bios/jeannie-freeman/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") After serving as a volunteer for several months, Jeannie officially joined the MitoAction team in January 2018. Although she had never heard of mitochondrial disease until she started working for MitoAction, Jeannie has dedicated herself to learning about this rare disease so she can help MitoAction continue to expand the ways in which we serve the Mito community. Jeannie oversees the day-to-day operations of MitoAction, as well as the Marcel’s Way Family Fund, scholarships, Matthew Harty Camper Fund, MitoSocials, and MitoPlaydates. “I couldn’t be happier to be a part of the MitoAction team! I truly love all that we do and feel so fortunate to be a part of something that touches the lives of so many people.” Contact Jeannie at [jeannie@mitoaction.org](jeannie@mitoaction.org) or call 734-552-8911. **Bio Types:** Staff --- ### [Phillip Borden, MBA](https://www.mitoaction.org/bios/philip-borden/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Philip Borden is Managing Partner for Galen Partners. Prior to Galen, Philip was with Riverside Partners, a private equity firm based in Boston, where he was responsible for the firm’s investments in healthcare companies. Philip attended Duke University and earned an MBA from Harvard Business School, where he was a Baker Scholar. Philip has lived in the Greater Boston area for more than a decade and currently resides in Cambridge with his wife, Catherine. Catherine suffers from mitochondrial disease, and Philip became involved with MitoAction following her diagnosis. Catherine and Philip have a vizsla named Rummy, who brings them lots of joy (but sometimes chews their furniture and shoes). **Bio Types:** Board of Directors --- ### [Gordon Russell](https://www.mitoaction.org/bios/gordon-russell/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Gordon Russell is a native Bostonian. He grew up in Weston, MA and attended Hobart College and the Boston University School of Fine Arts. He lost his wife, Sandra, to MELAS in 2008. Gordon is the owner of In The Pink Stores Inc., which he and Sandra founded in 1996. In The Pink operates six retail clothing stores in Massachusetts. Gordon has two children, Buck and Jonathan, and resides in Wellesley, MA. During Sandra’s struggle with MELAS, Gordon and his boys experienced firsthand the support and guidance provided by MitoAction and came to fully understand how critical a role the organization plays. Gordon is serving on the MitoAction board to support MitoAction’s evolution and to ensure MitoAction will always be positioned to provide vital support to individuals and families affected by mitochondrial disease. **Bio Types:** Board of Directors --- ### [Tom Keery](https://www.mitoaction.org/bios/tom-keery/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Thomas R. Keery, II is the General Partner of the Keery Family Limited Partnership, a real estate partnership with commercial and residential properties in Massachusetts. Prior to entering the real estate business, Tom was president of Frost Motors Inc., a Newton, MA dealership holding company. In operation since 1934, Tom joined the family business upon his graduation from Ithaca College in 1975 with a degree in Communications. Since 1985, Tom had been the Dealer Principal, and has successfully grown the business, acquiring and selling several dealerships. In 2002, he was named the Massachusetts recipient of Time Magazine’s Quality Dealer Award, which is given annually to automobile dealers in recognition of their leadership in community and Industry affairs. Tom is a member and past president of the Rotary Club of Newton, a member of St. Peter’s Church in Weston, a past director and officer of the YMCA, and a member and past director of the Newton Needham Chamber of Commerce. He is also a current member of the Board of Directors of the Village Bank in Newton. Tom’s sister Sandra passed away in 2008 due to MELAS. Born in Newton in 1953, Tom resides in Weston with his wife, Laura, where they raised their four children. He enjoys golf and cycling. **Bio Types:** Board of Directors --- ### [Ann Lanoue, RN](https://www.mitoaction.org/bios/ann-lanoue/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Ann Lanoue works tirelessly as the school nurse at Algonquin Middle School in Averill Park, NY. The school has more than 700 students and 100 staff members. Ann’s knowledge is matched with a tremendous desire to continually grow, learn, and support everyone at the school. Ann joined the Averill Park Central School District after a long career in nursing at a local hospital. Rare is the day that Ann takes a lunch break. She arrives to school early each day, works tirelessly without ever saying “no” to anyone, and regularly stays after school for several hours each day. Ann has led efforts to secure funding for the high school athletics program and modified athletics at the middle school, which were cut due to budget constraints. Each year, Ann coordinates giving hundreds of Christmas gifts and Thanksgiving meals to needy families in the community with the support of Kiwanis. Ann also makes sure that no student goes hungry, regularly connecting students and parents with resources to support them in difficult times. Ann has helped so many families that are in either crisis or struggling with what to do next as a result of major, catastrophic illnesses. Ann was selected as one of the top 10 nurses in the Capital Region and was featured in “Salute to Nurses.” **Bio Types:** Medical Advisory Committee --- ### [Amel Karaa, MD](https://www.mitoaction.org/bios/dr-amel-karaa/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Amel Karaa is a board-certified internist and clinical geneticist, director of the mitochondrial disease programs at the Massachusetts General Hospital in Boston (The Mito Clinic). She received an international baccalaureate in biology and chemistry (magna cum laude) from the Franzoesiches Gymnasium in Berlin and a medical degree (summa cum laude) from the Universite of Medicine et Pharmacy de Tunis in Tunisia. She has also completed her internal medicine residency and clinical genetic and metabolism fellowship through Harvard-wide programs. She received the 2013 United Mitochondrial Disease Foundation (UMDF) Fellowship and is currently overseeing clinical care for pediatric and adult mitochondrial disease patients and conducting clinical research and clinical trials for mitochondrial disease. She was elected president of the Mitochondrial medicine Society in June of 2018 and sits on the scientific and medical board of the Mitochondrial Disease Action Committee (MitoAction) and the United Mitochondrial Disease Foundation (UMDF). Dr. Karaa is also a founder and a board member of newly launched Mitochondrial Care Network (MCN), a US-wide network developing centers of excellence for mitochondrial disease and a principal site investigator for the North American Mitochondrial Disease Consortium (NAMDC). She is committed to being an advocate for her mitochondrial disease patients and their families, to educate health care providers in recognizing and treating mitochondrial patients within the community and to be a catalyst for bringing a much-needed cure to this population of patients. **Bio Types:** Medical Advisory Committee --- ### [Frances Kendall, MD](https://www.mitoaction.org/bios/dr-frances-kendall/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Frances Kendall is one of the pioneers in the field and is a Harvard-trained board-certified Clinical Biochemical Geneticist who founded the very first clinical mitochondrial disease program in the United States. Over decades of a career specializing in Metabolic, Mitochondrial, and Inherited Disorders, she: founded one of the first commercial laboratories focused on rare metabolic and mitochondrial disorders; pioneered telemedicine and private practice in rare genetics by founding VMP Genetics which has branched into 3 divisions (Direct Patient Care, Education, Physician to Physician Support); was the head of genetics for a large hospital system; authored chapters on mitochondrial medicine for medical texts and numerous research articles; lectures at medical schools and nursing schools on these disorders; is a frequent guest speaker at medical conferences on mitochondrial disease and autism; often acts as an expert witness in Federal court cases; and has appeared on national news outlets to offer expert opinion. She currently sees children and adult patients from around the world in either her VMP Genetics clinic offices in Atlanta, GA or by telemedicine. **Bio Types:** Medical Advisory Committee --- ### [Michael Kendall](https://www.mitoaction.org/bios/michael-kendall/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Michael Kendall has an extensive business background leading companies engaged in diverse marketplaces such as advertising, printing, graphic arts, executive recruiting, oil, retail, in-home services, technology, laboratory services, and healthcare. He managed the overall business aspects of one of the first commercial laboratories focused on rare metabolic and mitochondrial disorders, co-founder/Treasurer for a past mitochondrial foundation, and co-founded VMP Genetics. He developed the model for delivering telemedicine in rare genetics before there was a word for telemedicine, had the vision for expanding VMP Genetics expertise into 3 distinct divisions (Direct Patient Care, Education, Physician to Physician Support), and was an early adopter of leveraging social media in medicine. **Bio Types:** Medical Advisory Committee --- ### [Darius Adams, MD](https://www.mitoaction.org/bios/dr-darius-adams/) **Published:** October 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Darius Adams completed his internship and residency in Genetics at the Mount Sinai Medical Center in New York City, where he received comprehensive training in genetics and dysmorphology. He remained at Mount Sinai for an additional year to complete a fellowship in Metabolic/Biochemical Genetics. Dr. Adams was certified as a Clinical Geneticist by the American Board of Medical Genetics in September 2002 and 2012 and as a Clinical Biochemical Geneticist in September 2005. Dr. Adams joined the Pediatrics Department at Albany Medical Center in July 2003 as an attending physician and an Assistant Professor. He is now Medical Director of the Goryeb Children’s Hospital Genetics and Metabolism Division in addition to the Personalized Genomic Medicine Program at Atlantic Health System in Morristown, NJ. He also directs the Lysosomal Storage Disease program at Atlantic Health System and follows patients with Gaucher, Fabry, Pompe and Morquio A. --- ## Landing Pages ### [Mitochondrial Disease Symptoms](https://www.mitoaction.org/landing-page/mitochondrial-disease-symptoms/) **Published:** December 3, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Mitochondrial diseases are a varied group of disorders characterized by impaired energy production. The symptoms of mitochondrial disease can arise in any organ at any age. Some symptoms are hallmarks of mitochondrial disease and are called “red flag” symptoms. ![](https://www.mitoaction.org/wp-content/uploads/2024/07/Young-boy-and-his-mother-meeting-with-a-doctor-1024x683.webp)### Neurologic - Cerebral stroke-like lesions in a nonvascular pattern (brain lesions that do not appear like a regular stroke on imaging) - Basal ganglia disease (physical dysfunction, such as would occur with Parkinson’s disease) - Encephalopathy (brain disease) - Neurodegeneration (the progressive loss of structure or function of neurons, including death of neurons) - Epilepsia partialis continua (recurrent epileptic seizures that affect specific areas and recur every few seconds or minutes for extended periods) - Myoclonus (jerky contraction of groups of muscles) - Ataxia (loss of control of body movements) - MRI findings consistent with Leigh disease (in basal ganglia or brain stem) - Characteristic magnetic resonance spectrometry (MRS) peaks ### Cardiovascular - Hypertrophic cardiomyopathy with rhythm disturbance (thick heart muscle that can lead to irregular heartbeat) - Unexplained heart block in a child - Cardiomyopathy with lactic acidosis (build up of lactic acid in the body) - Dilated cardiomyopathy with muscle weakness - Wolff-Parkinson-White arrhythmia (a disorder of the heart’s electrical system that can cause fast heartbeat, palpitations, shortness of breath, and fainting) ![](https://www.mitoaction.org/wp-content/uploads/2025/01/Man-Visiting-the-Eye-Doctor-Ophthalmologist-—-MitoAction-1024x683.webp)### Ophthalmologic - Retinal (the back of the eye) degeneration with signs of night blindness, color-vision deficits, decreased visual acuity, or pigmentary retinopathy - Ophthalmoplegia paresis (weakness or paralysis of eye muscles) - Fluctuating, dysconjugate eye movements (eyes not moving together) - Ptosis (droopy upper eyelid) - Sudden or insidious-onset optic neuropathy/atrophy (damage to the optic nerve) ### Gastroenterological - Unexplained liver failure - Severe dysmotility (digestive tract muscles are impaired; food does not move through the system) - Pseudo-obstructive episodes (problem with gut motility that mimics an obstruction) ### Other - A newborn, infant, or young child with unexplained hypotonia (low muscle tone), weakness, failure to thrive, and a metabolic acidosis (particularly lactic acidosis) - Exercise intolerance that is not in proportion to weakness - Hypersensitivity to general anesthesia - Episodes of acute rhabdomyolysis (death of muscle fibers, which are then released into the blood stream) --- ## Mito Doctors ### [Richard Boles](https://www.mitoaction.org/mito-doctors/richard-boles/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Austin Larson](https://www.mitoaction.org/mito-doctors/austin-larson/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Kumarie Latchman](https://www.mitoaction.org/mito-doctors/kumarie-latchman/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Fran Kendall](https://www.mitoaction.org/mito-doctors/fran-kendall/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Joshua Baker](https://www.mitoaction.org/mito-doctors/joshua-baker/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Dmitriy Niyazov](https://www.mitoaction.org/mito-doctors/dmitriy-niyazov/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Amel Karaa](https://www.mitoaction.org/mito-doctors/amel-karaa/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Marni Faulk](https://www.mitoaction.org/mito-doctors/marni-faulk/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Amy Goldstein](https://www.mitoaction.org/mito-doctors/amy-goldstein/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Bruce Cohen](https://www.mitoaction.org/mito-doctors/bruce-cohen/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Fernando Scaglia](https://www.mitoaction.org/mito-doctors/fernando-scaglia/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Irina Anselm](https://www.mitoaction.org/mito-doctors/irina-anselm/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Andrea Gropman](https://www.mitoaction.org/mito-doctors/andrea-gropman/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Jaya Ganesh](https://www.mitoaction.org/mito-doctors/jaya-ganesh/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Gregory Enns](https://www.mitoaction.org/mito-doctors/gregory-enns/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Carol Greene](https://www.mitoaction.org/mito-doctors/carol-greene/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Johan Van Hove](https://www.mitoaction.org/mito-doctors/johan-van-hove/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Kevin Houston](https://www.mitoaction.org/mito-doctors/kevin-houston/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Margherita Milone](https://www.mitoaction.org/mito-doctors/margherita-milone/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Amit Sachdev](https://www.mitoaction.org/mito-doctors/amit-sachdev/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Bryan Hainline](https://www.mitoaction.org/mito-doctors/bryan-hainline/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Richard Frye](https://www.mitoaction.org/mito-doctors/richard-frye/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Renata Gallagher](https://www.mitoaction.org/mito-doctors/renata-gallagher/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Shawn McCandless](https://www.mitoaction.org/mito-doctors/shawn-mccandless/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Melissa Walker](https://www.mitoaction.org/mito-doctors/melissa-walker/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Ralitza Gavrilova](https://www.mitoaction.org/mito-doctors/ralitza-gavrilova/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Michio Hirano](https://www.mitoaction.org/mito-doctors/michio-hirano/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Mary Koenig](https://www.mitoaction.org/mito-doctors/mary-koenig/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Uta Lichter-Konecki](https://www.mitoaction.org/mito-doctors/uta-lichter-konecki/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Sumit Parikh](https://www.mitoaction.org/mito-doctors/sumit-parikh/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Russell Saneto](https://www.mitoaction.org/mito-doctors/russell-saneto/) **Published:** April 12, 2024 **Author:** Russell Weller --- ### [Richard Haas](https://www.mitoaction.org/mito-doctors/richard-haas/) **Published:** April 12, 2024 **Author:** Russell Weller --- ## Resources ### [Expert Series: NARP: Understanding the Spectrum of Disease](https://www.mitoaction.org/resources/expert-series-narp-understanding-the-spectrum-of-disease/) **Published:** August 21, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Sep-11-1-1024x1024.png)NARP (Neuropathy, Ataxia, and Retinitis Pigmentosa) is a mitochondrial disorder with a broad and variable clinical spectrum that can affect the nervous system, vision, movement, swallowing, cognition, and energy. This talk will explore the history and genetics of NARP, how genetic confirmation informs diagnosis and care, and how symptoms such as ataxia and energy impairment can manifest in ways that are often misunderstood. We will also discuss current approaches to symptom management, multidisciplinary care, and the evolving treatment landscape for individuals living with NARP. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_pdK_3jyJRSKxID5a6ORHGw) ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Image-8-20-26-at-352-PM-2.jpeg)Lily Walson is a clinical geneticist in the Division of Medical Genetics at Emory University, specializing in the diagnosis, risk assessment, and management of genetic disorders in children and adults, with a focus on adult-onset conditions. She has a particular interest in evaluating multisystem presentations of mitochondrial disorders, including unexplained fatigue, myopathy, hearing loss, and early-onset diabetes. Lily Walson, MD, MS Assistant Professor of Human genetics Emory University School of Medicine **Tags:** education, expert series, NARP, research **Resource Categories:** Day-to-Day with Mito, Research, Understanding Mito **Resource Type:** Expert Series --- ### [MitoArtisan’s Playtime – Course 10: Zebra Butterfly](https://www.mitoaction.org/resources/mitoartisans-playtime-course-10-zebra-butterfly/) **Published:** September 8, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/09/MitoArtisans-Course-10-4-1024x1024.png)**Course 10 Description:** Butterflies go through a metamorphosis; this makes me think of our bodies and how Mito changes us. We are forced to adapt in ways that we never anticipated. We strive to create balance in our energy needs; our life takes on a duality in the way we can be many iterations of ourselves depending on how we feel at any given time. Mito forces us to transform who we are in the world and shapes us into something new. Mito brought me back to my roots as an artist, had me begin *Mito Quilts of Hope* to advocate for our community and give comfort to those of us dealing with Mitochondrial Disease. I would not have done these things without my diagnosis. What has been your transformation? Think of this as we draw and feel free to share that with us through the session. **Supplies needed:** 1. **Drawing Paper** 1. Any type of paper will work. 2. Christine will be using Pastelmat No.6 paper in the color Anthracite which is a dark grey but feel free to use white paper. She is choosing to use the gray to demonstrate new techniques to everyone. 2. **Transferring Image below** 1. You may choose to free draw the picture below (bring the outline to the session) or trace the drawing given. 2. Many artists use transfer paper. You can choose to transfer the drawing to your paper by using a piece of graphite or carbon paper and draw over the line drawing. If you wish you can apply color directly on the printed copy of the drawing. It won’t be quite as nice as you won’t be able to blend the edges the way I’ll demonstrate, but do what you need to do to feel successful. 3. **Drawing Tools** 1. Please don’t feel bound to a particular medium, but the artist will work with Faber Castell Polychromos colored pencils if you would like to mimic her technique. 2. Faber Castell Polychromos 1. Black: 199 2. Grey: Warm Grey III 272, Warm Grey IV 273 3. Yellow: Light Chrome Yellow 106 4. Orange: Cadmium Orange 111 5. Yellow Green: Cadmium Yellow Lemon 205 6. Green: Permanent Green Olive 167 3. Kneadable eraser or a Tombow Mono Zero, if you have a white eraser this will also work. If you have any questions feel free to email Christine Knox before or after the session: christineknox0@gmail.com *(that is a zero)* This session is meant for our entire community!! No matter your ability, we would love for you to join us and participate! [Zebra Butterfly\_ Final Doc](https://www.mitoaction.org/wp-content/uploads/2026/09/Zebra-Butterfly_-Final-Doc.pdf)[Download](https://www.mitoaction.org/wp-content/uploads/2026/09/Zebra-Butterfly_-Final-Doc.pdf) [Register](https://mitoaction-org.zoom.us/meeting/register/wjNIEfTlQkepQXUw-EXvDw) ## About the Speaker ![](https://www.mitoaction.org/wp-content/uploads/2026/09/Image-9-8-26-at-751-AM.jpeg)#### Christine Knox I was born in Alberta, but raised primarily in Victoria, British Columbia Canada. Although, I have lived in most provinces of Canada, including the Arctic. Nature has been a huge part of my life, spending many hours either in the rainforest or at the beach or anywhere else I’ve lived has given me a profound love of nature in all it’s forms. Well maybe not spiders and snakes too much. My creativity began with spending hours coloring in coloring books, filling every page very carefully. Then I moved onto my first ‘real’ drawing at about 10 years old. These early drawings were centered around my surroundings and family. Pencils and pencil crayons were the first tools I learned to draw with so it’s not surprising that they have become my preferred medium. Although who knows where I’ll go next. My favorite subjects to draw from are animals and nature. Capturing the realistic feeling of fur, the smooth or rough textures found in nature are amazing to be able to portray. I primarily work on a few different surfaces when drawing, Dura-lar, Pastelmat, Bristol Board Paper or Suede Matte Board. For most of my adult life I had to concentrate on a regular income so I trained as a floral designer and eventually opened my own floral design studio. When I became ill with Mito at the age of 51, I had to close my business. I felt a deep sense of loss and purpose. I turned to my art to give me that purpose back and allow me to be creative in other ways. I began taking commissions for pet portraits with colored pencil. I’ve also started painting with acrylics again. Being able to have a flexible work schedule definitely works for me with Mito. I’m very excited to be able to mentor and share my lifetime of learning with students. I’ve always enjoyed teaching a number of different things, floral design, crocheting, knitting, drawing, crafts and quilting. To see some examples of my work you can go to my website:[ www.christineknox.ca](http://www.christineknox.ca/). **Resource Categories:** Day-to-Day with Mito, Understanding Mito **Resource Type:** MitoArtisans Playtime --- ### [Energy in Action Podcast Episode 165: Mitoman Takes on American Ninja Warrior](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-165-mitoman-takes-on-american-ninja-warrior/) **Published:** September 2, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/09/Episode-165-1024x1024.png)Sean Laughlin, known as “Mitoman,” is a teenager living with mitochondrial disease who has become a nationally competitive ninja athlete and competed on *American Ninja Warrior*. Alongside his mom, Christine, Sean shares the realities of training with Mito, the adaptations and recovery his body requires, and how ninja has given him a supportive community, meaningful friendships, and the chance to pursue something he loves. ## About this Episode **Mitoman Takes on American Ninja Warrior** Living with mitochondrial disease means constantly managing energy, pain, and physical limitations. For teenager Sean Laughlin, it also means competing on *American Ninja Warrior*. Known as “Mitoman,” Sean joins Marcy with his mom, Christine, to share how he went from struggling with feeding intolerance and low energy to becoming a nationally competitive ninja athlete. They talk about the backyard ninja course his dad built, the adjustments that allow him to train with Mito, and the unforgettable experience of earning a buzzer on *American Ninja Warrior* while more than 40 friends and supporters cheered him on from the sidelines. Sean and Christine also open up about the realities behind those incredible moments. Sean relies on a feeding tube for his nutrition, lives with daily pain and exhaustion, and often needs significant recovery time after training and competitions. But ninja has given him something beyond competition: a community where he can simply be a teenager, friendships built around something other than his disease, and a chance to show other kids facing physical challenges what may still be possible. Now ranked among the top ninja athletes in his age group, Sean has his sights set on returning to *American Ninja Warrior* and taking his journey even further. **Learn More About MitoAction** Website: [Homepage – MitoAction](https://www.mitoaction.org/) Facebook: [Mitoaction](https://www.facebook.com/MitoAction) Instagram: [MitoAction (@mitoaction) • Instagram profile](https://www.instagram.com/mitoaction) LinkedIn: X: [MitoAction (@MitoAction) on X](https://x.com/MitoAction) **Tags:** energy in action, mito, podcast **Resource Type:** Podcasts --- ### [Expert Series: Understanding the Current Landscape of Insurance Coverage for Rare Diseases](https://www.mitoaction.org/resources/expert-series-understanding-the-current-landscape-of-insurance-coverage-for-rare-diseases/) **Published:** March 6, 2026 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/03/March-20-Maynard-2-1024x1024.png)As our community celebrates the approval of two new therapies, understanding how to access coverage successfully has never been more important. In partnership with the Little Hercules Foundation and its founder, Kelly Maynard, this special MitoAction Expert Series will break down today’s evolving insurance landscape, including Medicaid, Medicare, ACA protections, and pharmacy vs. medical coverage, while also taking you behind the scenes to understand how claims are processed, how coding and prior authorizations impact access, and how to read and respond to an Explanation of Benefits. This practical, empowering session will equip patients and caregivers with the knowledge needed to anticipate barriers, avoid common missteps, and confidently advocate for timely access to treatment # Sponsored by: ![](https://www.mitoaction.org/wp-content/uploads/2026/08/ucb.png) https://youtu.be/2JN2e3QZFIw [View Slides](https://www.mitoaction.org/wp-content/uploads/2026/03/Kelly-Maynard-Slides-Insurance-Landscape.pdf) **Tags:** expert series, insurance **Resource Categories:** Understanding Mito **Resource Type:** Expert Series --- ### [Clinician Panel](https://www.mitoaction.org/resources/clinician-panel-3/) **Published:** August 31, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/X8uvbEN2EoI **Resource Type:** IMC 2026 --- ### [Pregnancies in Women with Long-Chain Fatty Acid Oxidation Disorders](https://www.mitoaction.org/resources/pregnancies-in-women-with-long-chain-fatty-acid-oxidation-disorders/) **Published:** August 31, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/4hk1Ev29yXk [Slides](https://www.mitoaction.org/wp-content/uploads/2026/08/Pregnancies-in-lcFAODs-2026-IMC-Virtual-FAOD-Conference.pdf) ## About the Speaker ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Image-8-31-26-at-1157-AM.jpeg)Prof. Dr. Sarah Grünert is a pediatric metabolic specialist working at the University Children’s Hospital Freiburg and associate professor of the Medical Faculty of the University Freiburg. After completing her medical studies in Freiburg, Innsbruck, London and Oxford, she performed her fellowship in Pediatrics at the University Medical Centre in Freiburg, Germany. In 2011, she completed a postdoctoral research fellowship at the University Children’s Hospital Zürich, Switzerland. Her main clinical and research interests are fatty acid oxidation defects, hepatic glycogen storage diseases, and disorders of ketone body metabolism. She also is subnetwork coordinator for these diseases in the European Reference Network for Hereditary Metabolic Disorders (MetabERN). **Resource Type:** IMC 2026 --- ### [Developing of a Cell-in-a-Dish Model to Study Peripheral Neurology in LCHADD](https://www.mitoaction.org/resources/developing-of-a-cell-in-a-dish-model-to-study-peripheral-neurology-in-lchadd/) **Published:** August 31, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/68uNEAjJSDQ Slides ## About the Speaker ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Image-8-31-26-at-1150-AM.jpeg)“I received my Master’s degree in Biochemistry and Molecular Biology from the University of Chinese Academy of Sciences. Prior to joining Aarhus University, I worked as a research assistant at Qilu Hospital, China, where my research focused on mitochondrial diseases. I am currently a PhD student in the Department of Clinical Medicine at Aarhus University, Denmark. My research centers on developing and applying the “LCHADD PN-in-a-dish” model in combination with biochemical analyses and multi-omics approaches to investigate fatty acid oxidation-related neuropathy. Through this work, I aim to advance the understanding of peripheral neuropathy in LCHADD and related metabolic disorders, including diabetes, and to support the development of future therapeutic strategies.” **Resource Type:** IMC 2026 --- ### [Cultivating a New Normal: A Guide for New Families with FAODS](https://www.mitoaction.org/resources/cultivating-a-new-normal-a-guide-for-new-families-with-faods/) **Published:** August 31, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/U4XX_n2vs0M [Slides](https://www.mitoaction.org/wp-content/uploads/2026/08/Arnold-Harry-Final.pdf) ## About the Speakers ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Image-8-31-26-at-1144-AM.jpeg)Dr. Arnold graduated from Indiana University with degrees in biology and chemistry, and has a Masters degree in Medical Genetics from Indiana University-Purdue University at Indianapolis. She graduated from medical school from Upstate Medical University, and completed a residency in Pediatrics at Northwestern University. Her genetics training was at the University of Colorado and she is boarded in Clinical Biochemical Genetics and Clinical Genetics. Dr. Arnold was Clinical Director and most recently Clinical Research Director at the University of Pittsburgh. She is an Emeritus Professor, and a consultant with VMP Genetics. Dr. Arnold is the past president of the Society for Inherited Metabolic Disorders, and recipient of the Shapira award for the best member’s paper in Molecular Genetics and Metabolism. She has a long-standing interest in fatty acid oxidation disorders, working with Dr. Vockley for 13 years. ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Image-8-31-26-at-1145-AM.jpeg)Stephanie’s son was diagnosed in 2008 with LCHAD deficiency. She spent her son’s early years educating herself through research, journal articles, work groups, and clinicians. She worked alongside her son’s dietitian to publish a children’s book called “My Special Body” geared toward educating young children with LC-FAODs. She is passionate about education, mentorship, and advocacy. In 2022 Stephanie joined the MitoAction team to support the greater mitochondrial community. **Resource Type:** IMC 2026 --- ### [Ultragenyx Study Updates & Initiatives](https://www.mitoaction.org/resources/ultragenyx-study-updates-initiatives/) **Published:** August 31, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/z3FlsIls1iQ **Resource Type:** IMC 2026 --- ### [Beyond Traditional Physical Therapy: Exploring New Paths in Metabolic Care](https://www.mitoaction.org/resources/beyond-traditional-physical-therapy-exploring-new-paths-in-metabolic-care/) **Published:** August 31, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/pnx4QMYey3Q [Slides](https://www.mitoaction.org/wp-content/uploads/2026/08/Pam-Tucker-PT-Presentation-2026-F.pdf) ## About the Speakers: ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Image-8-31-26-at-1132-AM.jpeg)Dr. Pamela Tucker, PT, DPT, is a physical therapist at Bethany Children’s Health Center, where she practices on the medical rehabilitation unit, specializing in the care of medically complex pediatric patients. She earned her undergraduate degree from Duke University and her doctorate in Physical Therapy from Franklin Pierce University. Dr. Tucker brings a diverse clinical background spanning acute care, inpatient rehabilitation, and outpatient physical therapy, with experience treating infant, pediatric, and adult populations. Her clinical expertise focuses on neurorehabilitation, functional mobility, and optimizing participation and independence across the continuum of care. A recognized national and international speaker, Dr. Tucker has contributed to the advancement of rehabilitation practice through multiple peer-reviewed publications and professional presentations. She is committed to translating evidence into practice and advancing interdisciplinary care for individuals with complex medical and neurological conditions. Her research interests include physical therapy interventions for children with inherited metabolic disorders, aquatic physical therapy, concussion management, and robotic-assisted mobility training. Dr. Tucker is currently working on a physical therapy protocol to recover from rhabdomyolysis. ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Image-8-31-26-at-1132-AM-1.jpeg)Brian Weber, DPT, CFMT, FFMT, FAFS, FAAOMPT is the founder of KINECIO Physical Therapy in Woodbury, Minnesota, where he specializes in second opinions and complex case management. Dr. Weber received his Doctorate in Physical Therapy from the University of Iowa and completed fellowships in Functional Manual Therapy through the Institute of Physical Art and Applied Functional Science through the Gray Institute. Hiswork focuses on integrating advanced manual therapy, movement science, and whole-body clinical reasoning to improve movement, performance, and quality of life. **Resource Type:** IMC 2026 --- ### [Understanding LC-FAOD Guidelines](https://www.mitoaction.org/resources/understanding-lc-faod-guidelines/) **Published:** August 31, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/B5oVN8kkNi4 Slides ## About the Speaker ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Image-8-31-26-at-1124-AM.jpeg)Besides being an active member of INFORM Network, Professor Karall is responsible for inherited metabolic disorders in her current position as a Consultant to the Department for Child and Adolescent Medicine at Medical University of Innsbruck. FAOD dietary research as well as other treatment options, such as anaplerotic therapies, are her primary areas of focus. Professor Karall’s training included neuropediatrics and neonatology / pediatric intensive care, and she is an International board-certified Lactation Consultant. **Resource Type:** IMC 2026 --- ### [FAOD Updates](https://www.mitoaction.org/resources/faod-updates/) **Published:** August 31, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/sBNEy1zTG64 [Slides](https://www.mitoaction.org/wp-content/uploads/2026/08/Vockley-FAOD-Updates.pdf) ## About Speaker ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Image-8-28-26-at-223-PM-2.jpeg)Dr. Vockley received his undergraduate degree at Carnegie-Mellon University in Pittsburgh, Pennsylvania, and received his MD and PhD degrees in Medicine and Genetics from the University of Pennsylvania School of Medicine in Philadelphia, Pennsylvania. He completed his pediatric residency at the Denver Children’s Hospital, Denver, Colorado, and his postdoctoral fellowship in Human Genetic and Pediatrics at Yale University School of Medicine in New Haven, Connecticut. Before assuming his current position in Pittsburgh, Dr. Vockley was Chair of Medical Genetics in the Mayo Clinic School of Medicine. Dr. Vockley is internationally recognized as a leader in the field of inborn errors of metabolism. His current research focuses on mitochondrial energy metabolism, novel therapies for disorders of fatty acid oxidation and amino acid metabolism, and population genetics of the Plain communities in the United States. He has published over 400 peer reviewed scholarly articles and is the principal or Co-investigator on multiple NIH grants. Dr. Vockley also has an active clinical research program and participates in and consults on multiple gene therapy trials. Dr. Vockley has served on numerous national and international scientific boards including the Advisory Committee (to the Secretary of Health and Human Services) on Heritable Disorders in Newborns and Children where he was chair of the technology committee. He has been elected as a Fellow/Member of the American Association for the Advancement of Science, the Association of American Physicians, and the American Society for Clinical Investigation. Dr. Vockley is a Founding Fellow of the American College of Medical Genetics and Genomics, and currently serves on its board of directors. He is co-founder and co-chair of the International Network on Fatty Acid Oxidation Research and Therapy (INFORM). He has served as chair of the Pennsylvania State Newborn Screening Advisory Committee and is a past president of the Society for the Inherited Metabolic Disorders (SIMD). He is co-founder and editor of the SIMD North American Metabolic Academy. He provides support for numerous family advocacy groups including MitoAction, the United Mitochondrial Disease Foundation, the National PKU Association, and the Organic Acidemia Association. He has received the National Organization of Rare Diseases Scientific and Medical Trailblazer Rare Impact Award (2025) The Organic Acidemia Association Award of Excellence (2021), and the March of Dimes Champion for Babies Award (2015). **Resource Type:** IMC 2026 --- ### [From Supplements to Weight Loss- Maximizing Your Nutrition Health](https://www.mitoaction.org/resources/from-supplements-to-weight-loss-maximizing-your-nutrition-health/) **Published:** August 31, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/Qz-AoUIUHd4 Slides ## About Speaker ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Image-8-28-26-at-223-PM-3.jpeg)Melanie Gillingham is a professor in Molecular and Medical Genetics at Oregon Health & Science University in Portland, OR. She completed her PhD in Nutrition Science at the University of Wisconsin-Madison and a post-doctoral fellowship in Genetics at OHSU. As a metabolic dietitian, she has been investigating nutrition interventions in patients with fatty acid oxidation disorders for 25 years. **Tags:** faod, mito, nutrition, research **Resource Categories:** Care Management, Day-to-Day with Mito, Exercise **Resource Type:** IMC 2026 --- ### [Emerging Genetic Therapies for FOADs](https://www.mitoaction.org/resources/emerging-genetic-therapies-for-foads/) **Published:** August 28, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/Xxnq6z_kuLg Slides ## About Speakers: ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Image-8-28-26-at-223-PM.jpeg)Melanie Gillingham is a professor in Molecular and Medical Genetics at Oregon Health & Science University in Portland, OR. She completed her PhD in Nutrition Science at the University of Wisconsin-Madison and a post-doctoral fellowship in Genetics at OHSU. As a metabolic dietitian, she has been investigating nutrition interventions in patients with fatty acid oxidation disorders for 25 years. ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Image-8-28-26-at-223-PM-1.jpeg)Dr. Koeberl attended Carleton College, and then Mayo Medical School and Graduate School, before moving to UCSF for his pediatrics residency. He then completed fellowship training in Clinical and Biochemical Genetics at the University of Washington, before joining the Division of Medical Genetics in the Department of Pediatrics at Duke University in 1999. He serves as Medical Director for the Pediatrics Biochemical Genetics Laboratory and sees patients in the Metabolic Clinic. His research has focused on the development of new therapy for inherited metabolic disorders, including glycogen storage disease type Ia and Pompe disease. He initiated a clinical trial of AAV8 gene therapy for Pompe disease that is ongoing. His laboratory is currently developing genetic therapies for trifunctional protein deficiency and LCHAD deficiency. ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Image-8-28-26-at-223-PM-2.jpeg)Dr. Vockley received his undergraduate degree at Carnegie-Mellon University in Pittsburgh, Pennsylvania, and received his MD and PhD degrees in Medicine and Genetics from the University of Pennsylvania School of Medicine in Philadelphia, Pennsylvania. He completed his pediatric residency at the Denver Children’s Hospital, Denver, Colorado, and his postdoctoral fellowship in Human Genetic and Pediatrics at Yale University School of Medicine in New Haven, Connecticut. Before assuming his current position in Pittsburgh, Dr. Vockley was Chair of Medical Genetics in the Mayo Clinic School of Medicine. Dr. Vockley is internationally recognized as a leader in the field of inborn errors of metabolism. His current research focuses on mitochondrial energy metabolism, novel therapies for disorders of fatty acid oxidation and amino acid metabolism, and population genetics of the Plain communities in the United States. He has published over 400 peer reviewed scholarly articles and is the principal or Co-investigator on multiple NIH grants. Dr. Vockley also has an active clinical research program and participates in and consults on multiple gene therapy trials. Dr. Vockley has served on numerous national and international scientific boards including the Advisory Committee (to the Secretary of Health and Human Services) on Heritable Disorders in Newborns and Children where he was chair of the technology committee. He has been elected as a Fellow/Member of the American Association for the Advancement of Science, the Association of American Physicians, and the American Society for Clinical Investigation. Dr. Vockley is a Founding Fellow of the American College of Medical Genetics and Genomics, and currently serves on its board of directors. He is co-founder and co-chair of the International Network on Fatty Acid Oxidation Research and Therapy (INFORM). He has served as chair of the Pennsylvania State Newborn Screening Advisory Committee and is a past president of the Society for the Inherited Metabolic Disorders (SIMD). He is co-founder and editor of the SIMD North American Metabolic Academy. He provides support for numerous family advocacy groups including MitoAction, the United Mitochondrial Disease Foundation, the National PKU Association, and the Organic Acidemia Association. He has received the National Organization of Rare Diseases Scientific and Medical Trailblazer Rare Impact Award (2025) The Organic Acidemia Association Award of Excellence (2021), and the March of Dimes Champion for Babies Award (2015). **Resource Type:** IMC 2026 --- ### [Family and Patient Panel](https://www.mitoaction.org/resources/family-and-patient-panel/) **Published:** August 31, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/OB1HuVVMXfI **Tags:** FAOD support, IMC, support **Resource Categories:** Caregivers & Family, Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC 2026 --- ### [Stealth BioTherapeutics & NuPOWER Trial Update](https://www.mitoaction.org/resources/stealth-biotherapeutics-nupower-trial-update/) **Published:** March 1, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Stealth’s lead investigational compound elamipretide targets the inner mitochondrial membrane, binds to cardiolipin and has been shown to improve mitochondrial function. It is being studied in rare diseases linked to mitochondrial dysfunction such as primary mitochondrial myopathy and Barth syndrome. Stealth will share lessons from the SPIMM 301 and TAZPOWER studies, explain how these results helped design the NuPOWER trial, describe how we think this product works and share information about their Expanded Access Program. https://youtu.be/VxESnkPpR8c **Resource Categories:** Clinical Trials **Resource Type:** Expert Series --- ### [MitoArtisan's Playtime - Course 4: The Horse of a Different Color & Stripes](https://www.mitoaction.org/resources/mitoartisans-playtime-course-4-horse-of-a-different-color/) **Published:** February 6, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Download the Course 4 Supply List, Description, and Outline Sketch and watch the video below.** [Title\_ Description (1)](https://www.mitoaction.org/wp-content/uploads/2025/02/Title_-Description-1.pdf)[Download](https://www.mitoaction.org/wp-content/uploads/2025/02/Title_-Description-1.pdf) https://youtu.be/EHDB4LKckqs **Here are some of our Artisan’s creations!** [![](https://www.mitoaction.org/wp-content/uploads/2025/02/MitoArtisans-Playtime-4-—-Zebra-7-788x1024.jpg)](https://www.mitoaction.org/wp-content/uploads/2025/02/MitoArtisans-Playtime-4-—-Zebra-7-scaled.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2025/02/MitoArtisans-Playtime-4-—-Zebra-6-788x1024.jpg)](https://www.mitoaction.org/wp-content/uploads/2025/02/MitoArtisans-Playtime-4-—-Zebra-6-scaled.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2025/02/MitoArtisans-Playtime-4-—-Zebra-5-788x1024.jpg)](https://www.mitoaction.org/wp-content/uploads/2025/02/MitoArtisans-Playtime-4-—-Zebra-5-scaled.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2025/02/MitoArtisans-Playtime-4-—-Zebra-4-788x1024.jpg)](https://www.mitoaction.org/wp-content/uploads/2025/02/MitoArtisans-Playtime-4-—-Zebra-4-scaled.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2025/02/MitoArtisans-Playtime-4-—-Zebra-3-788x1024.jpg)](https://www.mitoaction.org/wp-content/uploads/2025/02/MitoArtisans-Playtime-4-—-Zebra-3-scaled.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2025/02/MitoArtisans-Playtime-4-—-Zebra-2-788x1024.jpg)](https://www.mitoaction.org/wp-content/uploads/2025/02/MitoArtisans-Playtime-4-—-Zebra-2-scaled.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2025/02/MitoArtisans-Playtime-4-—-Zebra-1-788x1024.jpg)](https://www.mitoaction.org/wp-content/uploads/2025/02/MitoArtisans-Playtime-4-—-Zebra-1-scaled.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2025/02/MitoArtisans-Playtime-4-—-Zebra-8-788x1024.jpg)](https://www.mitoaction.org/wp-content/uploads/2025/02/MitoArtisans-Playtime-4-—-Zebra-8-scaled.jpg)[![](https://www.mitoaction.org/wp-content/uploads/2025/02/MitoArtisans-Playtime-4-—-Zebra-9-768x1024.jpg)](https://www.mitoaction.org/wp-content/uploads/2025/02/MitoArtisans-Playtime-4-—-Zebra-9-scaled.jpg) **Resource Type:** MitoArtisans Playtime --- ### [Evening Expert Series: Cooking Demo](https://www.mitoaction.org/resources/evening-expert-series-cooking-demo/) **Published:** June 6, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Are you a teen/young adult FAOD exploring cooking and food options? Join Chef and Foodservice Consultant Glenn Noffsinger as he demos for us cooking options in the FAOD Kitchen. You will receive an ingredient list in advance so you can choose to cook alongside Glenn. This time will be filled with good food and good conversation. Come ready to cook and connect with other FAODs around food! **Tags:** expert series **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** FAOD Expert Series --- ### [Fatty Acid Oxidation Disorders](https://www.mitoaction.org/resources/fatty-acid-oxidation-disorders/) **Published:** February 5, 2016 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") What are fatty acid oxidation disorders, and why are they related to mitochondrial disorders? Additional areas of discussion include: - Do patients with mitochondrial defects also have the potential to have fatty acid oxidation defects? - How do disorders of metabolism such as FAOD and mitochondrial disease impact the body’s ability to grow, develop and function? - What is the current focus in research for understanding and treating FAODs? **Special appreciation to Ultragenyx Pharmaceutical for support of this presentation.** **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** Expert Series, FAOD Expert Series --- ### [FAOD: The Other Mitochondrial Energy Diseases](https://www.mitoaction.org/resources/upcoming-dr-vockley-faod-the-other-mitochondrial-energy-diseases/) **Published:** October 4, 2019 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/OS0-02gfIWs **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** Expert Series, FAOD Expert Series --- ### [Energy in Action Podcast Episode 162: Nutrition Advice Mito Patients Need](https://www.mitoaction.org/resources/action-in-energy-podcast-episode-162-nutrition-advice-mito-patients-need/) **Published:** July 15, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/07/Episode-162-1-1024x1024.png)In this episode of *Energy in Action*, Marcy speaks with leading mitochondrial expert Dr. Tarnopolsky about the science behind nutrition and mitochondrial disease. Together, they explore evidence-based insights on food, supplements, sleep, brain fog, protein, creatine, and popular diet trends—helping separate fact from fiction. Whether you’re looking to boost energy, better understand the mitochondrial cocktail, or make informed nutrition choices, this conversation offers practical guidance grounded in research. ## Episode Highlights Nutrition is one of the most talked-about—and most misunderstood—topics in the mitochondrial disease community. In this episode, Marcy sits down with internationally recognized mitochondrial expert Dr. Tarnopolsky for a practical, evidence-based conversation about what actually matters when it comes to food, supplements, brain fog, and long-term health. From the role of sleep in cognitive function to the science behind creatine, protein intake, processed foods, and popular fad diets, Dr. Mark cuts through the noise and explains what the research really says. Whether you’re wondering if the mitochondrial cocktail is worth taking, trying to improve your energy levels, or looking for realistic ways to support your health through nutrition, this episode is packed with actionable insights. Dr. Tarnopolsky is a Professor of Pediatrics and Head of the Division of Neuromuscular and Neurometabolic Disorders at McMaster University and McMaster Children’s Hospital. A globally respected researcher and clinician, he has spent decades studying mitochondrial disease, muscle disorders, nutrition, exercise, and metabolic health. His work has helped shape how clinicians think about supplements, creatine, and lifestyle interventions for people living with mitochondrial disease, making him one of the leading voices in the field today. **Learn More About MitoAction** Website: [https://www.mitoaction.org](https://www.mitoaction.org/) Facebook: Instagram: LinkedIn: Twitter/X: **Tags:** energy in action, nutrition, patient advice, podcast **Resource Categories:** Caregivers & Family, Nutrition, Research, Understanding Mito **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 163: Exercise Without Fear: How to Build Stronger Mitochondria Safely](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-163-exercise-without-fear-how-to-build-stronger-mitochondria-safely-copy/) **Published:** August 7, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Episode-163-1-1024x1024.png)Living with mitochondrial disease can make exercise feel overwhelming, but the right approach can improve both health and quality of life. In this episode, Dr. Tarnopolsky shares practical, evidence-based guidance on how to exercise safely, build confidence, and make movement work for your body. Whether you’re just getting started or getting back into a routine, you’ll walk away with realistic strategies to help you move with confidence. ## Episode Highlights **Exercise Without Fear: How to Build Stronger Mitochondria Safely** Exercise can feel intimidating when you live with mitochondrial disease, especially if you’re worried about pain, fatigue, or overdoing it. In this episode, Dr. Tarnopolsky returns to the podcast to explain why movement remains one of the most powerful tools we have for improving mitochondrial health and quality of life. He breaks down the difference between endurance and resistance training, how to start safely at your own level, why recovery is just as important as exercise itself, and how even small improvements in fitness can make everyday activities feel easier. Whether you’re new to exercise or trying to regain confidence after setbacks, this conversation offers practical, evidence-based guidance to help you move forward. Dr. Tarnopolsky is a neurologist, neuromuscular specialist, researcher, and internationally recognized expert in mitochondrial disease, exercise physiology, and nutrition. Drawing on decades of clinical experience and research, he shares why exercise should never be an all-or-nothing proposition, how patients can avoid common mistakes, and why personalized, sustainable movement remains one of the most effective interventions available for improving both healthspan and mitochondrial function. **Learn More About MitoAction** Website: [Homepage – MitoAction](https://www.mitoaction.org/) Facebook: [Mitoaction](https://www.facebook.com/MitoAction) Instagram: [MitoAction (@mitoaction) • Instagram profile](https://www.instagram.com/mitoaction) LinkedIn: X: [MitoAction (@MitoAction) on X](https://x.com/MitoAction) **Tags:** energy in action, exercise, mito support, podcast, research, wellness **Resource Categories:** Exercise, Research, Understanding Mito **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 164: The Research Unlocking Mitochondrial DNA](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-164-the-research-unlocking-mitochondrial-dna/) **Published:** August 19, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Episode-164-2-1024x1024.png)In this episode of Energy in Action, Marcy Young talks with Dr. Bill Copeland about the science behind mitochondrial DNA replication and what decades of research are revealing about mitochondrial disease. From POLG and Twinkle mutations to new approaches for diagnosis and treatment, Dr. Copeland shares the discoveries advancing the field and what gives him hope for the future of mito research. ## Episode Highlights **The Research Unlocking Mitochondrial Disease** What happens when the machinery responsible for copying mitochondrial DNA doesn’t work the way it should? In this episode, Marcy Young talks with Dr. Bill Copeland, leader of the Mitochondrial DNA Replication Group at the National Institute of Environmental Health Sciences, about the science behind mitochondrial DNA replication and what his decades of research are revealing about mitochondrial disease. Dr. Copeland breaks down complex topics including POLG and Twinkle mutations, heteroplasmy, mitochondrial DNA deletions, and the technique his team developed to detect deletions that conventional methods can miss. He also explains how this work is improving our understanding of disease and helping researchers identify new paths toward diagnosis and treatment. Dr. Copeland also shares what gives him hope about where mitochondrial disease research is headed. From new discoveries about the structure and function of proteins involved in mitochondrial DNA replication to promising small-molecule approaches being investigated by researchers around the world, the field has changed considerably in recent years. Just as importantly, Dr. Copeland discusses why training the next generation of mitochondrial researchers and connecting directly with patients and families are essential to moving the science forward. **Learn More About MitoAction** Website: [Homepage – MitoAction](https://www.mitoaction.org/) Facebook: [Mitoaction](https://www.facebook.com/MitoAction) Instagram: [MitoAction (@mitoaction) • Instagram profile](https://www.instagram.com/mitoaction) LinkedIn: X: [MitoAction (@MitoAction) on X](https://x.com/MitoAction) **Tags:** DNA, energy in action, podcast, POLG, research **Resource Categories:** Day-to-Day with Mito, Research, Understanding Mito **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 158: Why Sleep Matters More Than You Think with Mitochondrial Disease](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-158-why-sleep-matters-more-than-you-think-with-mitochondrial-disease/) **Published:** May 26, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/05/Episode-158-1-1024x1024.png)In this episode of *Energy in Action*, Marcy Young welcomes back Dr. Mark for a practical and deeply informative conversation about sleep, fatigue, and mitochondrial health. **EPISODE HIGHLIGHTS** For people living with mitochondrial disease, sleep is not just rest. It is part of how the body restores, rebuilds, and prepares for the next day. In this episode of *Energy in Action*, Marcy Young welcomes back Dr. Mark for a practical and deeply informative conversation about sleep, fatigue, and mitochondrial health. Dr. Mark explains why sleep is so important for the body’s repair systems, how circadian rhythm connects to mitochondrial function, and why poor sleep can have such a noticeable impact on energy, pain, focus, and overall well-being. Marcy and Dr. Mark also talk through the everyday factors that can help or hurt sleep, from caffeine, screen time, alcohol, late meals, and exercise timing to pillows, mattresses, light, sound, naps, melatonin, sleep apnea, restless leg syndrome, and sleep tracking devices. For anyone in the mito community who struggles to fall asleep, stay asleep, or wake up feeling rested, this episode offers clear, realistic guidance on what may be worth adjusting and when to seek medical support. **Resources & Ways to Connect** - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, podcast, sleep **Resource Categories:** Care Management, Day-to-Day with Mito, Understanding Mito **Resource Type:** Podcasts --- ### [Expert Series: Understanding the FALCON Study: Investigating a Potential Therapy for Mitochondrial Disease](https://www.mitoaction.org/resources/expert-series-understanding-the-falcon-study-investigating-a-potential-therapy-for-mitochondrial-disease/) **Published:** August 17, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Aug-14-3-1024x1024.png)This presentation will dive deep into the “Falcon Study” to explain what this study is, who qualifies, the mechanism of action of the compound being studied, and how its efficacy is measured. https://youtu.be/JBH0q17oWI4 [Slides](https://www.mitoaction.org/wp-content/uploads/2026/08/MitoAction-FALCON-study-Aug-2026-1.pdf) **Tags:** expert series, Falcon Study, mitochondrial disease, research, therapy **Resource Categories:** Awareness, Day-to-Day with Mito, Research, Therapy **Resource Type:** Expert Series --- ### [Expert Series: Understanding the potential of a "CPK Meter”](https://www.mitoaction.org/resources/expert-series-understanding-the-potential-of-a-cpk-meter/) **Published:** May 26, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/05/June-18-IVDS-1-1024x1024.png)IVDS is a biotech company developing a CPK meter called, *CPK Now.* This small, handheld device will allow patients to check their creatine kinase (CK) level quickly from a fingerstick sample, so they and their care team can react sooner and monitor their care more effectively. This presentation will discuss the science behind the technology, how this meter could be used, where the research/development currently stands, and what the pipeline could look like. https://youtu.be/3qGcM4ePFLw [Slides](https://www.mitoaction.org/wp-content/uploads/2026/06/20260618-IVDS-Overview-for-Mitoaction-vF.pdf) **Tags:** CPK Meter, expert series, faod **Resource Categories:** Day-to-Day with Mito, Fatty Acid Oxidation Disorder (FAOD), Understanding Mito **Resource Type:** Expert Series, FAOD Expert Series --- ### [Energy in Action Podcast Episode 161: FAOD Families: Don’t Miss This Free Virtual Conference](https://www.mitoaction.org/resources/action-in-energy-podcast-episode-161-faod-families-dont-miss-this-free-virtual-conference/) **Published:** July 1, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/06/Episode-161-1-1024x1024.png)In Episode 161 of *Energy in Action*, Marcy sits down with MitoAction’s Stephanie Harry to preview the upcoming virtual FAOD Conference and discuss why it has become such an important resource for patients and families. They explore how the conference is shaped by community needs and highlight this year’s wide range of topics, including gene therapy, emerging research, mental health, pregnancy, and navigating school and adulthood. As MitoAction’s FAOD Program Manager and a parent of a child with FAOD, Stephanie shares how the conference creates a meaningful space for learning, support, and connection. ## **Episode Highlights** Whether you’re newly diagnosed or have been living with an FAOD for years, finding trustworthy information and connecting with others who truly understand your journey can make all the difference. In this episode, Marcy is joined by MitoAction’s Stephanie Harry to preview MitoAction’s upcoming virtual FAOD Conference and explain why it has become such a valuable resource for patients and families. They discuss how the conference is shaped by the community itself, what attendees can expect this year, and why topics ranging from gene therapy and emerging research to mental health, pregnancy, school, adulthood, and peer connection make this year’s program one of the most comprehensive yet. Stephanie Harry is MitoAction’s FAOD Program Manager and the parent of a son with a fatty acid oxidation disorder. Drawing on both lived experience and years of advocacy, she has helped grow the annual FAOD Conference into a collaborative event that brings together patients, caregivers, researchers, and clinicians from around the world. Whether you’re looking to learn, ask questions, or simply connect with others who understand life with an FAOD, this episode offers a helpful introduction to everything the conference has to offer. **Learn More About MitoAction** Website: [Homepage – MitoAction](https://www.mitoaction.org/) Facebook: [Mitoaction](https://www.facebook.com/MitoAction) Instagram: [MitoAction (@mitoaction) • Instagram profile](https://www.instagram.com/mitoaction) LinkedIn: X: [MitoAction (@MitoAction) on X](https://x.com/MitoAction) **Resource Type:** Podcasts --- ### [Alex the Great and LCHAD](https://www.mitoaction.org/resources/alex-the-great-and-lchad/) **Published:** October 6, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **ENERGY IN ACTION – EPISODE 066** Alex the Great and LCHAD Alex is in her second year of college at Texas Tech where she is studying human development and family sciences. She also has LCHAD, a long-chain fatty acid oxidation disorder. ### EPISODE HIGHLIGHTS **Can you introduce yourself and share more about LCHAD?** I’m 20 years old and a sophomore at Texas Tech University. LCHAD is a rare genetic metabolic disorder that prevents me from using fat for energy. I eat a low fat diet because my condition prevents my body from breaking down long-chain fats. I take supplements that have fats my body can use and I include limited essential fats. **How do you manage your way of eating?** I’ve known of my disease my whole life, so I’ve had a lot of experience reading nutritional labels and eating the right diet for me. That has allowed me to go to restaurants and order food that is within my limitations. I use alternatives like powdered peanut butter instead of jar peanut butter so I can eat a lot of typical fatty foods without being too restrictive. On campus I am able to eat in the dining hall and request foods be prepared in a way that I can eat them, but there’s also a dietitian on campus who keeps a nutrition log I can refer to when I need to. **What is your advice for other rare disease students considering going away to college?** I was very determined, so it’s worth trying, taking on a little more responsibility and going after dreams. It takes work to manage rare disease at college, but it’s doable. Plan with your parents to make sure there are people to support you while you adjust. **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 160: The Fight That Changed Disability Rights Forever](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-160-the-fight-that-changed-disability-rights-forever/) **Published:** June 17, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/06/Episode-156-1024x1024.png)In Episode 160 of *Energy in Action*, Matthew Cech takes listeners on a journey through the history of the disability rights movement, highlighting the people, events, and advocacy efforts that helped shape the rights and accommodations many rely on today. From the transformative community of Camp Jened to the movement that led to the Americans with Disabilities Act, Matthew shares why these stories matter and how they continue to influence accessibility, inclusion, and advocacy today. https://energy-in-action-by-mitoaction.castos.com/episodes/the-fight-that-changed-disability-rights-forever ## **EPISODE HIGHLIGHTS** Matthew Cech returns to *Energy in Action* for a conversation that sheds light on a part of disability history many people have never heard. Inspired by a college course on the psychosocial impact of disability and illness, Matthew shares the stories, advocacy efforts, and pivotal moments that helped shape the rights and accommodations people with disabilities rely on today. From the groundbreaking Camp Jened community to the protests that led to the Americans with Disabilities Act, this episode explores how ordinary people created extraordinary change—and why understanding that history still matters. Listeners may remember Matthew from a previous episode where he shared his own mitochondrial disease journey. Now a 21-year-old college student pursuing a degree in allied health, he brings both personal experience and academic insight to a discussion about disability rights, accessibility, accommodations, and the ongoing work of creating a more inclusive world. Thoughtful, hopeful, and deeply informative, this conversation is a reminder that many of the opportunities available today were earned through decades of advocacy, courage, and persistence. **Learn More About MitoAction** Website: [https://www.mitoaction.org](https://www.mitoaction.org/?utm_source=chatgpt.com) Facebook: [https://www.facebook.com/mitoaction](https://www.facebook.com/mitoaction?utm_source=chatgpt.com) X (Twitter): Instagram: [https://www.instagram.com/mitoaction](https://www.instagram.com/mitoaction?utm_source=chatgpt.com) LinkedIn: [https://www.linkedin.com/company/mitoaction/](https://www.linkedin.com/company/mitoaction/?utm_source=chatgpt.com) **Resource Type:** Podcasts --- ### [MitoArtisan's Playtime - Course 6: MitoHeart Project](https://www.mitoaction.org/resources/mitoartisans-playtime-course-6-mitohearts-project/) **Published:** August 29, 2025 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/08/MitoArtisans-Course-6-1-1024x1024.png)**Course 6 Description** *“The idea for the MitoHeart Project began one evening on a MitoChampion zoom call. During the call, I was knitting and listening to others as they discussed a recent tragedy in our Mito community. I felt so powerless to help, but as I listened, the idea of making hearts for individuals who are struggling or challenged by their health, or the loss of a loved one burned within me.” -Karen Richtman* We would like to encourage you to consider sharing love with those in our Mito Community by making a heart! The heart isn’t difficult to knit. If you are a beginner knitter who knows how to knit and purl, and ideally knows how to follow a pattern, we could use your help with making hearts! There is an ongoing need for more hearts in the Mito community. Whether you are curious about how these beautiful hearts are made, or hope to make some yourself, **we encourage you to join us on September 14th at 3pm (ET) for our next MitoArtisian Playtime.** We will lead you through the steps of making a heart, and a video of the class will be recorded for you to use in the future! If you like to knit and have never heard of mitochondrial disease, what an amazing opportunity to learn more about this community as we launch into Mitochondrial Disease Awareness Week September 15-21st! https://youtu.be/GIwmK22YCjs?si=lUkFvco7AbGViAHk [Course-6\_-MitoHeart-Project-1](https://www.mitoaction.org/wp-content/uploads/2025/08/Course-6_-MitoHeart-Project-1.pdf) [Download the Pattern](https://www.mitoaction.org/wp-content/uploads/2025/11/MItoHeartsKnitting-Pattern-10_14_25.pdf) ![](https://www.mitoaction.org/wp-content/uploads/2025/08/DKA_LOGO_RGB-4-2.jpg)**A special thanks to Darn Knit Anyway for co-hosting this event! Click [HERE](https://www.darnknitanyway.com/?y_source=1_NjYwNzUzMDMtNzE1LWxvY2F0aW9uLndlYnNpdGU%3D) to visit their website and learn more.** **Resource Type:** MitoArtisans Playtime --- ### [MitoArtisan's Playtime - Course 7: Fall Leaves Falling](https://www.mitoaction.org/resources/mitoartisans-playtime-course-7-fall-leaves-falling/) **Published:** October 13, 2025 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/10/MitoArtisans-Course-7-1024x1024.png)**Course 7 Description** *Fall brings a special kind of beauty that we all seek to enjoy in a variety of ways! The crisp air draws us outside to feel the wind on our face, and the leaves tout their glory with reds, yellows, and oranges! This course will seek to capture that beauty in a simple way, using a few colored pencils.* The most important item you’ll need is a leaf from outside. If you are unable to pick a leaf yourself, ask someone to do it for you! When you are selecting a leaf, try and find a multi-colored one that has the colors in your supply list below. **Supplies:** 1. **Colored Pencils**: Brown, Yellow, Orange, Green and Red. (It doesn’t matter what brand they are, but ideally if you have various shades, in each of these colors, that will give you great results.) 2. **Pencil Sharpener** 3. **Rubber Eraser** 4. **Leaf from Outside** 5. **Paper** (any type, however artist quality papers will give you the best results) **Special Note:** Another option is to start this session with a line drawing for a leaf. You can find one that appeals to you. Or click [HERE](https://www.supercoloring.com/sites/default/files/fif/pdf/2023/11/maple-leaf-1-a4-2-paper-crafts.pdf) to print one off. This session is meant for our entire community!! No matter your ability, we would love for you to join us and participate! **Resource Type:** MitoArtisans Playtime --- ### [Expert Series: Simplifying the Mitochondrial Medication Experience Through Compounded Mito Cocktails](https://www.mitoaction.org/resources/expert-series-simplifying-the-mitochondrial-medication-experience-through-compounded-mito-cocktails/) **Published:** May 12, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![Event poster for Monthly Mito Expert Series with title, date and time, and three speaker headshots (Bryan R. Cohen, Houry Lopedjian, Jonathan Mordis).](https://www.mitoaction.org/wp-content/uploads/2026/05/ES-June-5-Chemistry-RX-1024x1024.png)As the incidence of mitochondrial disease continues to rise, patients having a better understanding surrounding their therapies remains critical. Compounding pharmacies play a key role in simplifying medication regimens while providing affordable options. This presentation will explore the importance of compounding pharmacies while highlighting how ACHC rare disease accredited compounding pharmacies employ clinical teams that support both patients and clinicians during their treatment journey. https://youtu.be/jEgvlX30TMQ?si=itXDmBEhLL4UVI0F [Slides](https://www.mitoaction.org/wp-content/uploads/2026/06/Chem-RX-Presention-June-2026.pptx-1.pdf) **Tags:** expert series, mito cocktail **Resource Categories:** Understanding Mito **Resource Type:** Expert Series --- ### [Episode 2: Wondering Wednesdays: Ask the Genetic Counselor (February 22, 2023)](https://www.mitoaction.org/resources/wondering-wednesdays-ask-the-genetic-counselor-copy/) **Published:** February 22, 2023 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Genetics can feel like they’re written in a foreign language but you don’t have to figure it out on your own. Genetic Counselor and Mito Advocate, Devin Shuman, will host these sessions to answer questions and help make genetics feel more accessible to everyone. “Wondering Wednesdays: Ask the Genetic Counselor” will take place every 4th Wednesday of the month. https://youtu.be/DLrBZxQI1IA [Register for an upcoming presentation](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG) **Tags:** diagnosis, diagnostic report, expert series, Genetic Counselor, Genetics, mito **Resource Categories:** Diagnosis, Genetic Counselors, Genetic Testing **Resource Type:** Expert Series, Wondering Wednesdays --- ### [Episode 1: Wondering Wednesdays: Ask the Genetic Counselor (January 25, 2023)](https://www.mitoaction.org/resources/wondering-wednesdays-ask-the-genetic-counselor/) **Published:** February 25, 2023 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Genetics can feel like they’re written in a foreign language but you don’t have to figure it out on your own. Genetic Counselor and Mito Advocate, Devin Shuman, will host these informal non-recorded sessions to answer questions and help make genetics feel more accessible to everyone. “Wondering Wednesdays: Ask the Genetic Counselor” will take place every 4th Wednesday of the month. https://youtu.be/DuY6pWbJRgw [Register for an upcoming presentation](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG) **Resource Categories:** Genetic Counselors, Genetic Testing **Resource Type:** Expert Series, Wondering Wednesdays --- ### [Energy in Action Podcast Episode 159: How One FDA Meeting Gave the MELAS Community a Voice](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-159-how-one-fda-meeting-gave-the-melas-community-a-voice/) **Published:** June 3, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/06/Episode-159-3-1024x1024.png)In this episode of Energy in Action, Marcy Young is joined by PFDD panel participants Gordon, Jackie, and Cheryl for a powerful conversation about living with MELAS, speaking directly to the FDA, and the impact of advocacy within the mitochondrial disease community. Together, they share personal stories of caregiving, grief, resilience, and connection while highlighting the urgent need for greater awareness, research, and support for families affected by mitochondrial disease. ## **EPISODE HIGHLIGHTS** For families living with MELAS, the emotional toll of mitochondrial disease extends far beyond the diagnosis itself. In this episode of *Energy in Action*, Marcy Young is joined by PFDD panel participants Gordon, Jackie, and Cheryl to reflect on their experience speaking directly to the FDA about the realities of living with MELAS. Together, they share deeply personal stories about caregiving, advocacy, grief, progression, and the urgent need for better treatments and support for mitochondrial disease families. The conversation explores what it was like to prepare for such a vulnerable and high-stakes meeting, how the panelists unexpectedly formed lasting bonds through the process, and why sharing the hardest parts of this disease matters. From navigating stroke-like episodes and delayed diagnoses to the emotional impact on siblings and caregivers, this episode offers an honest look at the ripple effects of MELAS — while also highlighting the hope that comes from advocacy, connection, and being heard. **In this episode, you’ll hear:** - What a Patient-Focused Drug Development (PFDD) meeting is and why it matters for rare disease communities - Gordon’s story of his late wife’s sudden MELAS diagnosis and how MitoAction became a lifeline for his family - Jackie’s perspective as a sibling advocate supporting her brother TJ through disease progression - Cheryl’s experience caring for both her husband and son while navigating a devastating diagnosis - The emotional preparation involved in speaking directly to the FDA about life with MELAS - Why caregivers, siblings, and family members carry their own unique form of grief - How advocacy and storytelling can create urgency for treatments, research, and change - The lasting impact of connection within the mitochondrial disease community **Resources & Ways to Connect** - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, mito community, podcast **Resource Categories:** Advocacy, Care Management, Day-to-Day with Mito, Food and Drug Administration (FDA), MELAS, Understanding Mito **Resource Type:** Podcasts --- ### [Expert Series: Neuropathy and Disorders of Mitochondrial Dysfunction](https://www.mitoaction.org/resources/expert-series-neuropathy-and-disorders-of-mitochondrial-dysfunction/) **Published:** February 20, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/02/March-6-Goldstein-1024x1024.png)Dr. Amy Goldstein will join MitoAction to review the neurological system and the differences between types of neuropathies. She will explore what conditions neuropathy is most associated with, how neuropathy is diagnosed, testing options, and caveats behind testing. She will also share current management strategies (including medications, equipment, and trials). https://youtu.be/OVPXzHxIlXo **Tags:** expert series, mitochondrial dysfunction, neuropathy **Resource Categories:** Understanding Mito **Resource Type:** Expert Series, FAOD Expert Series --- ### [MitoArtisan's Playtime - Course 9: Writing as Healing Workshop](https://www.mitoaction.org/resources/mitoartisans-playtime-course-9-writing-as-healing-workshop/) **Published:** May 28, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![Promotional poster for MITO ARTISAN'S PLAYTIME: Course 9—Writing as Healing Workshop with Brad Buchanan, June 14, 2026; on the right, a close-up of a hand writing in a notebook.](https://www.mitoaction.org/wp-content/uploads/2026/05/MitoArtisans-Course-9-1024x1024.png)**Course 9 Description** Writing as Healing workshops offer a safe, supportive space to express our thoughts and feelings through words, enabling us to process trauma, accept difficult news, and rebuild resilience. We are excited to have author Brad Buchanan back with us! He will share a poem from his recent book, “The Birds of Poverty Ridge” and we will have the opportunity to learn and explore the power of writing to heal together! So grab a cup of tea, pen and paper, and come ready to dig deep and be inspired! **Supplies:** 1. Paper or Journal 2. Pencil or Pen 3. Warm mug, special treats, something fun to get your creative juices flowing [Register](https://mitoaction-org.zoom.us/meeting/register/Jm_MgtuMRhmHFs8hsTUQkw) **Resource Categories:** Day-to-Day with Mito, Understanding Mito **Resource Type:** MitoArtisans Playtime --- ### [Expert Series: Eat Smart, Power Strong: Your Mitochondrial Nutrition Grade](https://www.mitoaction.org/resources/expert-series-eat-smart-power-strong-your-mitochondrial-nutrition-grade/) **Published:** March 17, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/03/April-3-Dabari-1-1-1024x1024.png)If you were to grade your knowledge of nutrition and meal planning and preparation, would you pass? This presentation will explain the basic nutrition needs essential for overall health in individuals with mitochondrial disease. Strategies for meal planning and meal preparation- while navigating fatigue and muscle strength- will also be shared. https://www.youtube.com/watch?v=ipDqvZG58Cs [View Slides](https://www.mitoaction.org/wp-content/uploads/2026/05/MitoActionPresentation_DiVito-April-2026-PDF.pdf) [Optimized Nutrition Article](https://www.mitoaction.org/wp-content/uploads/2026/05/Optimized-Nutrition-in-Mitochondrial-Disease-Correlates-to-Improved-Muscle-Strength.9.2023.pdf) [Article Supplementary Material](https://www.mitoaction.org/wp-content/uploads/2026/05/Opt-Nutr-Article-Supplementary-Material.pdf) **Tags:** expert series, gastrointestinal motility, mitochondrial function **Resource Categories:** Treatments, Understanding Mito **Resource Type:** Expert Series --- ### [Expert Series: Lactic Acid & Mitochondrial Disease: When there’s too much of a good thing](https://www.mitoaction.org/resources/expert-series-lactic-acid-mitochondrial-disease-when-theres-too-much-of-a-good-thing/) **Published:** April 22, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![Poster announcing the Monthly Mito Expert Series on lactic acid & mitochondrial disease, featuring Dr. Rebecca Ganetzky, MD.](https://www.mitoaction.org/wp-content/uploads/2026/04/May-1-Ganetzky-1024x1024.png)Lactic acid is an essential metabolite in our body, helping move energy from tissues that generate it, to the tissues that need it the most. We will talk about what lactic acid is supposed to do and how that gets dysregulated in mitochondrial disease. Objectives include naming causes of high lactate, evaluating lactate metabolically & listing downstream impacts of high lactate. https://youtu.be/6g783Nn1QkQ?si=sz296WkHSlNL0fJW **Tags:** expert series, lactic acid **Resource Categories:** Understanding Mito **Resource Type:** Expert Series --- ### [Expert Series: Direct to Consumer Genetic Testing 101](https://www.mitoaction.org/resources/expert-series-direct-to-consumer-genetic-testing-101/) **Published:** March 15, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/03/April-16-Shuman-1024x1024.png)Join us to hear genetic counselor Devin Shuman, CGC, talk about direct-to-consumer testing (DTC). DTC testing is any genetic test that you can order for yourself without a medical health provider. These are often advertised on social media but can be sold in stores. DTC testing can be complicated and it is hard to figure how these tests differ from the testing your provider may order. Come learn the 101 about this testing before you consider buying one or before you try and figure out your results on your own. https://www.youtube.com/watch?v=kRUvCDyDTt8 **Tags:** expert series, Genetic Counselor, genetic testing **Resource Categories:** Genetic Counselors, Genetic Testing, Understanding Mito **Resource Type:** Wondering Wednesdays --- ### [Energy in Action Podcast Episode 157: Free Housing for Hospital Visits? The Resource Every Family Should Know](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-157-housing-for-hospital-visits/) **Published:** May 6, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/05/Episode-157-1-1024x1024.png)This episode highlights a simple but powerful idea: placing families in real homes—not hotels—during some of the most stressful moments of their lives. **EPISODE HIGHLIGHTS** Mike Aichenbaum, founder of Hosts for Hospitals, turned his own battle with leukemia into a mission that has now supported over 4,500 patient families traveling to Philadelphia for care. Joined by one of the organization’s hosts, Rebecca Flanner, this episode highlights a simple but powerful idea: placing families in real homes—not hotels—during some of the most stressful moments of their lives. They share how the organization works, who qualifies, and why something as small as a quiet, welcoming place to stay can completely change a family’s experience during treatment. From emotional patient stories to the logistics of matching hosts with families, this conversation sheds light on a resource that removes both financial strain and emotional isolation. If you or someone you know travels for medical care, this is an episode worth knowing about. **Resources & Ways to Connect** - Hosts for Hospitals Website: [Home – Hosts for Hospitals](https://www.hostsforhospitals.org/) - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, hospital, podcast, resources **Resource Categories:** Day-to-Day with Mito, Understanding Mito **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 156: Honoring Katie: The Rare Disease Friendships That Change Everything](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-156-honoring-katie-the-rare-disease-friendships-that-change-everything/) **Published:** May 6, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/05/Episode-156-1024x1024.png)In this deeply emotional conversation, Stephanie and Tasia reflect on the unique bond formed through rare disease, the complexity of grieving someone you never met face-to-face, and the lasting impact Katie had on their lives. **EPISODE HIGHLIGHTS** Stephanie and Tasia return to *Energy in Action* to honor their beloved friend Katie—a fierce advocate, deep thinker, and unforgettable presence in the rare disease community. Though they never met her in person, Katie became a constant in their lives, offering guidance, humor, and an unshakable commitment to helping others navigate the realities of living with a rare metabolic disorder. In this deeply emotional conversation, they reflect on the unique bond formed through rare disease, the complexity of grieving someone you never met face-to-face, and the lasting impact Katie had on their lives. They share stories of her relentless self-advocacy, her generosity in supporting others, and the way she found joy and connection despite serious illness. This episode is a powerful reminder of how meaningful these relationships can be—and why they deserve to be honored. **Resources & Ways to Connect** - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, friendship, podcast **Resource Categories:** Day-to-Day with Mito, Grief **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 155: Why Mito Care Is Finally Changing](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-155-why-mito-care-is-finally-changing/) **Published:** April 9, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/04/Episode-155-Dr.-Sanchez-1024x1024.png) In this episode of *Energy in Action*, she shares the path that led her from growing up in Colombia—where she was first exposed to children with complex medical conditions—to becoming a physician deeply committed to advancing care for some of the most challenging disorders in medicine. **EPISODE HIGHLIGHTS** Dr. Rosanna Sanchez Russo is a biochemical geneticist at Emory University who has dedicated her career to caring for patients with mitochondrial and other rare diseases. In this episode of *Energy in Action*, she shares the path that led her from growing up in Colombia—where she was first exposed to children with complex medical conditions—to becoming a physician deeply committed to advancing care for some of the most challenging disorders in medicine. She also explains what drew her specifically to mitochondrial disease and why these conditions continue to push both science and clinical care to their limits. Dr. Sanchez Russo offers a clear look at how mitochondrial care is evolving today, from earlier and more accurate diagnoses to the growing importance of multidisciplinary teams and personalized approaches to treatment. She walks through what families can expect when meeting with a geneticist, how care plans are built, and why nutrition, supplements, and emerging therapies remain areas of both promise and uncertainty. With new clinics, collaborations, and research efforts taking shape, this conversation provides an honest and hopeful perspective on where mitochondrial disease care stands today—and where it may be headed next. **Resources & Ways to Connect** - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, mito care, podcast **Resource Categories:** Care Management, Research, Understanding Mito **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 154: How Mighty Matthew Keeps Moving Forward](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-154-how-mighty-matthew-keeps-moving-forward/) **Published:** April 9, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/04/Episode-154-1024x1024.png)In this episode of *Energy in Action*, he shares his long diagnostic journey, from missed milestones and years of invasive testing to finally receiving a diagnosis of Complex I and III mitochondrial disease. **EPISODE HIGHLIGHTS** Matthew Cech has spent his entire life adapting to mitochondrial disease, but his story is about far more than the medical challenges he has faced. In this episode of *Energy in Action*, he shares his long diagnostic journey, from missed milestones and years of invasive testing to finally receiving a diagnosis of Complex I and III mitochondrial disease. He also opens up about one of the most harrowing chapters of his childhood, when a routine motility study led to sepsis, emergency surgery, a medically induced coma, and a month-long hospital stay that changed everything. Matthew also talks about living with a G-tube, J-tube, and ileostomy, the emotional reality of growing up unable to eat normally, and how much it meant to be supported by his family, school, medical team, and wider community. He reflects on the accommodations that helped him build a full life, the organizations that gave him extraordinary experiences, and the superhero identity he created for himself as “Mighty Matthew.” This is a powerful conversation about survival, perspective, and what it means to keep finding joy and purpose in a life that has asked so much. **Resources & Ways to Connect** - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** diagnosis journey, energy in action, podcast **Resource Categories:** Awareness, Day-to-Day with Mito, Diagnosis **Resource Type:** Podcasts --- ### [Expert Series: An overview of gastrointestinal motility and mitochondrial function](https://www.mitoaction.org/resources/expert-series-an-overview-of-gastrointestinal-motility-and-mitochondrial-function/) **Published:** March 11, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/03/April-3-Dabari-1-1024x1024.png)Gastroparesis and motility complications are not uncommon for those with mitochondrial disease. During this presentation, Dr. Darbari will provide a background of our understanding of gastrointestinal motility and explore the complexities that patients face with diagnosis and current treatment strategies for conditions related to mitochondrial function. He will also explain current understanding surrounding neuropathy of the gut, and explore answered and unanswered questions as to why this occurs. https://youtu.be/5ox5Ogho5Wo **Tags:** expert series, gastrointestinal motility, mitochondrial function **Resource Categories:** Treatments, Understanding Mito **Resource Type:** Expert Series --- ### [Energy in Action Podcast Episode 153: Supporting Siblings in Rare Disease Families](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-153-supporting-siblings-in-rare-disease-families/) **Published:** March 11, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/03/Episode-153-Ryan-Mendel-1024x1024.png)In this episode of *Energy in Action*, host Marcy Young speaks with Ryan about her path from a high school genetics class to working in the Mitochondrial Medicine Frontier Program at Children’s Hospital of Philadelphia, where she conducted large-scale drug screening research and presented findings at national conferences. **EPISODE HIGHLIGHTS** Ryan Mendel is a graduate student in genetic counseling who has already immersed herself in mitochondrial research, clinical care, and rare disease advocacy. In this episode of *Energy in Action*, host Marcy Young speaks with Ryan about her path from a high school genetics class to working in the Mitochondrial Medicine Frontier Program at Children’s Hospital of Philadelphia, where she conducted large-scale drug screening research and presented findings at national conferences. Ryan shares what it was like to witness both the lab side and the clinic side of mitochondrial disease—and how that dual perspective shaped her commitment to patient-centered care. Now completing her master’s degree in genetic counseling, Ryan is focusing her thesis on an often-overlooked group in rare disease families: unaffected siblings. She discusses how pediatric genetic diagnoses impact siblings emotionally, socially, and long-term—from feeling pressure to overachieve, to becoming young caregivers, to quietly carrying fear and uncertainty. Ryan explains her goal of creating practical, family-centered resources that genetic counselors can use to better support siblings from the very beginning. This conversation offers hope for the future of rare disease care and highlights the importance of treating the whole family—not just the diagnosis. **Resources & Ways to Connect** - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, Genetic Counselor, Genetics, podcast **Resource Categories:** Advocacy, Genetic Counselors **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 152: Fighting for Approval and Winning](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-152-fighting-for-approval-and-winning/) **Published:** February 18, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/02/Episode-152-1-1024x1024.png)In this episode of *Energy in Action*, host Marcy Young sits down with them to unpack the deeply personal journeys that led each of them into advocacy—from living decades with debilitating symptoms, to fighting for newborn sons in heart failure, to honoring loved ones lost too soon. **EPISODE HIGHLIGHTS** Walker, Madison, and Jordan are three relentless advocates whose determination helped push a life-changing therapy for Barth syndrome across the finish line. In this episode of *Energy in Action*, host Marcy Young sits down with them to unpack the deeply personal journeys that led each of them into advocacy—from living decades with debilitating symptoms, to fighting for newborn sons in heart failure, to honoring loved ones lost too soon. They share how grassroots organizing, congressional outreach, social media campaigns, and powerful patient testimony helped turn a devastating FDA denial into an eventual approval for elamipretide. Along the way, they reveal what it felt like to count remaining medication vials, stand outside the White House with photos of their children, and finally hear the words they had fought so hard for. Their stories are raw, hopeful, and fiercely determined—and they show exactly what can happen when rare disease families refuse to give up, not just for themselves, but for everyone still waiting for a chance. **Resources & Ways to Connect** - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** barth syndrome, drug approval, energy in action, podcast **Resource Categories:** Advocacy, Patient Stories, Treatments **Resource Type:** Podcasts --- ### [MitoArtisan's Playtime - Course 8: Writing as Healing Workshop](https://www.mitoaction.org/resources/mitoartisans-playtime-course-8-writing-as-healing-workshop/) **Published:** January 9, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/01/MitoArtisans-Course-8.png)**Course 8 Description** Did you know that there is a lot of evidence showing that writing about our feelings can benefit us in multiple ways? Expressive writing: - Reduces stress - Decreases symptoms - Strengthens immune systems - Shortens recovery periods - Improves family relationships Writing as Healing workshops offer a safe, supportive space to express our thoughts and feelings through words, enabling us to process trauma, accept difficult news, and rebuild resilience. Join MitoAction and author Brad Buchanan for our first, “Writing as Healing Workshop.” **Supplies:** 1. Paper or Journal 2. Pencil or Pen 3. Warm mug, special treats, something fun to get your creative juices flowing https://youtu.be/MOBRLCIIJ9g **Resource Categories:** Day-to-Day with Mito, Understanding Mito **Resource Type:** MitoArtisans Playtime --- ### [Energy in Action Podcast Episode 151: Hope for FAOD Patients Through Research](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-151-hope-for-faod-patients-through-research/) **Published:** February 4, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/02/Episode-151-Melanie-1024x1024.png)In this episode of *Energy in Action*, host Marcy Young speaks with Dr. Gillingham about the journey that led her from clinical dietetics into FAOD research, the impact of meeting one young patient with LCHAD early in her training, and the deeply personal connection she maintains with families affected by these rare diseases. **EPISODE HIGHLIGHTS** Dr. Melanie Gillingham is a professor of molecular and medical genetics at Oregon Health & Science University and one of the leading researchers in fatty acid oxidation disorders (FAODs). In this episode of *Energy in Action*, host Marcy Young speaks with Dr. Gillingham about the journey that led her from clinical dietetics into FAOD research, the impact of meeting one young patient with LCHAD early in her training, and the deeply personal connection she maintains with families affected by these rare diseases. They discuss the results of a five-year natural history study on LCHAD retinopathy, why puberty may be a turning point in vision decline, and how new preclinical models—from iPSC-derived retinal cells to animal studies—are driving progress toward future treatments. Dr. Gillingham also explains why nutrition research is still so limited in mitochondrial disease, how new advances in precision nutrition might change that, and what’s next in her ambitious plan to launch a national FAOD Consortium. From patient-inspired breakthroughs to surprise stories of regained mobility, this episode is a powerful reminder that real hope is rooted in rigorous science—and in the people who never stop asking what’s possible. **Resources & Ways to Connect** - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, faod, LCHAD retinopathy, podcast **Resource Categories:** Day-to-Day with Mito, Fatty Acid Oxidation Disorder (FAOD), Research **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 150: What PFDD Meetings Mean for the Mito Community](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-150-what-pfdd-meetings-mean-for-the-mito-community/) **Published:** February 4, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/02/Episode-150-Marina-1024x1024.png)In this episode of *Energy in Action*, host Marcy Young sits down with industry expert Marina Kolocha to unpack what PFDD meetings are, why they matter, and how they can help drive real progress in mitochondrial disease research and treatment. **EPISODE HIGHLIGHTS** Patient-Focused Drug Development (PFDD) meetings are one of the most powerful advocacy tools available to rare disease communities—but most patients have never heard of them. In this episode of *Energy in Action*, host Marcy Young sits down with industry expert Marina Kolocha to unpack what PFDD meetings are, why they matter, and how they can help drive real progress in mitochondrial disease research and treatment. Marina shares insights from her experience moderating over 40 PFDD meetings and breaks down the goals, structure, and long-term impact of these events. Together, they discuss the first-ever PFDD meeting focused on MELAS, scheduled for February 10, 2026, and how patients and caregivers can participate. From voicing daily challenges to shaping future drug development, this conversation offers a rare behind-the-scenes look at a process designed to amplify patient stories at the highest level. **Resources & Ways to Connect** - [Learn More About MitoAction’s MELAS PFDD Meeting](https://www.mitoaction.org/join-the-cause/patient-focused-drug-development-meeting-on-melas/) - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, pfdd, pfdd meetings, podcast **Resource Categories:** Day-to-Day with Mito **Resource Type:** Podcasts --- ### [Expert Series: Understanding TK2d and the KYGEVVI Approval](https://www.mitoaction.org/resources/expert-series-understanding-tk2d-and-the-kygevvi-approval/) **Published:** January 6, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/01/Jan-23-Chang-1024x1024.png)Join us for an informative webinar exploring KYGEVVI™ (doxecitine and doxribtimine), the first FDA-approved treatment for thymidine kinase 2 deficiency (TK2d) in adults and pediatric patients with an age of symptom onset on or before 12 years. This session will cover: - The basics of TK2d, including its genetic cause, symptoms, and how it is diagnosed - The impact of TK2d on patients and families - An overview of KYGEVVI, including how it works and who may be eligible for treatment - Important safety information and what to expect with therapy For full prescribing information and important safety details, please visit [https://www.kygevvi.com/](https://eur02.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.kygevvi.com%2F&data=05%7C02%7CSarah.Chang%40ucb.com%7C9d67851ee18d4ccb086008de4ca44849%7C237582ad3eab4d44868806ca9f2e613b%7C0%7C0%7C639032465629876092%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=a990Puj4gs77isy9TgmqEMseZaLUcmZ%2BjQbF6zkUZSg%3D&reserved=0). https://youtu.be/IA6rQ0HCJbI [View Slides](https://www.mitoaction.org/wp-content/uploads/2026/01/Brief-doxecitine-and-doxribtimine-presentation_for-patient-organizations-and-communities.pdf) **Tags:** expert series, new treatment, tk2d **Resource Categories:** TK2d, Treatments **Resource Type:** Expert Series --- ### [2026 Mito Town Meeting](https://www.mitoaction.org/resources/2026-mito-town-meeting/) **Published:** November 19, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") #### Friday, January 16, 2026 The annual mito town meeting is our way of kicking off the new year by sharing all that we have in store for the next 12 months! We will hear from organizations and companies around the globe that have special opportunities, programs, and projects for patients and families affected by mitochondrial disease. https://youtu.be/I8xt7SHnN5Q **2026 Meeting Agenda** [2026-Mito-Town-Meeting-Agenda-Instructions.docx-Google-Docs](https://www.mitoaction.org/wp-content/uploads/2026/01/2026-Mito-Town-Meeting-Agenda-Instructions.docx-Google-Docs.pdf) **Tags:** expert series, mito town meeting, research, Town Meeting **Resource Categories:** Research, Town Hall Meetings **Resource Type:** Expert Series --- ### [Energy in Action Podcast Episode 149: Creativity and Community: MitoArtisans in Action](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-149-creativity-and-community-mitoartisans-in-action/) **Published:** January 7, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/01/Episode-149-Christine-and-Steph-1024x1024.png)In this episode of *Energy in Action*, host Marcy Young sits down with Stephanie and Christine to explore how creative expression can support mental health, build confidence, and foster resilience through all stages of the mito journey. **EPISODE HIGHLIGHTS** Stephanie Harry and Christine Knox are two powerhouse voices in the mitochondrial disease community, using art as a tool for healing, connection, and empowerment. In this episode of *Energy in Action*, host Marcy Young sits down with Stephanie and Christine to explore how creative expression can support mental health, build confidence, and foster resilience through all stages of the mito journey. Whether it’s pencil drawings, music, poetry, or pottery, both women emphasize the importance of play, experimentation, and community in living fully with mito. Stephanie, MitoAction’s Patient Support Coordinator, and Christine, an artist and long-time community leader, share how their own experiences with mitochondrial disease and caregiving shaped their passion for art—and how that passion sparked two of MitoAction’s most beloved creative programs: *MitoArtisans Playtime* and the annual *MitoArt Show*. They discuss what these spaces offer for patients of all ages and abilities, why creativity belongs in everyone’s toolbox, and how you can get involved—whether as an artist, observer, or simply someone looking to reconnect with themselves. **Resources & Ways to Connect** - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, mitoartisan's playtime, podcast **Resource Categories:** Day-to-Day with Mito **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 148: Inside MitoAction: Support, Advocacy, and a Community That Cares](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-148-inside-mitoaction-support-advocacy-and-a-community-that-cares/) **Published:** January 7, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/01/Episode-148-Kira-and-Steph-1024x1024.png)In this episode, Kira, MitoAction’s CEO, and Stephanie, a longtime patient advocate and Mito411 coordinator, share updates on new therapies, how MitoAction collaborates with pharmaceutical companies and clinicians, and why patient voices are vital to progress **EPISODE HIGHLIGHTS** As we kick off a new year, Marcy sits down with Kira Mann and Stephanie Harry to explore the many ways MitoAction supports the mitochondrial disease community. From programs that provide diagnostic guidance and one-on-one support, to creative outlets like art shows and local walks, Kira and Stephanie break down everything MitoAction has to offer — and how you can get involved. Their passion, warmth, and deep knowledge of the challenges patients face shine through in this informative and inspiring conversation. Kira, MitoAction’s CEO, and Stephanie, a longtime patient advocate and Mito411 coordinator, share updates on new therapies, how MitoAction collaborates with pharmaceutical companies and clinicians, and why patient voices are vital to progress. They also highlight key programs like Wondering Wednesdays with genetic counselor Devin Shuman, monthly support groups, and the growing network of Mito Champions. Whether you’re newly diagnosed, a seasoned patient, a caregiver, or a clinician looking to support your patients more meaningfully, this episode is a roadmap to connection, empowerment, and hope. **Resources & Ways to Connect** - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** advocacy, energy in action, podcast, support **Resource Categories:** Day-to-Day with Mito **Resource Type:** Podcasts --- ### [Expert Series: Taking the risk out of MCAD deficiency: clinical trials are the path to treatment](https://www.mitoaction.org/resources/expert-series-taking-the-risk-out-of-mcad-deficiency/) **Published:** January 5, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2026/01/Dec-16-Vockley-1024x1024.png)MCAD deficiency is the most common fatty acid oxidation disorder, but it is the only one without a treatment. Patients face continued risks of becoming hypoglycemic with fasting or illness, with chronic muscle symptoms becoming increasingly recognized. This webinar will present insight into metabolic changes caused by MCAD deficiency, and two clinical trials are currently open to test new medications to treat it. https://youtu.be/ugFMVGBsVDY **Tags:** clinical trials, expert series, MCADD **Resource Categories:** Treatments **Resource Type:** FAOD Expert Series --- ### [FAOD Therapy Updates](https://www.mitoaction.org/resources/faod-therapy-updates/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=6gfvFtibyBE&list=PLTrGsiiotyLf6HvONRoU8nb1NbTR1j7SU&index=12 **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC 2025 --- ### [FAOD Cooking Tips and Tricks](https://www.mitoaction.org/resources/faod-cooking-tips-and-tricks/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=s2jJA1lEYbo&list=PLTrGsiiotyLf6HvONRoU8nb1NbTR1j7SU&index=11 **Resource Categories:** Day-to-Day with Mito, Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC 2025 --- ### [Understanding all FAODs](https://www.mitoaction.org/resources/understanding-all-faods/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=uwDSkI2wvgE&list=PLTrGsiiotyLf6HvONRoU8nb1NbTR1j7SU&index=10 **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC 2025 --- ### [Clinician Panel](https://www.mitoaction.org/resources/clinician-panel-2/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=P5SQ7mOQhQw&list=PLTrGsiiotyLf6HvONRoU8nb1NbTR1j7SU&index=9 **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC 2025 --- ### [Approaching Sports and Exercise](https://www.mitoaction.org/resources/approaching-sports-and-exercise/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=XLeCbR_szvQ&list=PLTrGsiiotyLf6HvONRoU8nb1NbTR1j7SU&index=8 **Resource Categories:** Exercise, Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC 2025 --- ### [Growing Up: Meeting New Challenges in Reproductive Health from Puberty and Beyond](https://www.mitoaction.org/resources/growing-up-meeting-new-challenges-in-reproductive-health-from-puberty-and-beyond/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=vAZV2StezMk&list=PLTrGsiiotyLf6HvONRoU8nb1NbTR1j7SU&index=7 **Resource Categories:** Aging, Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC 2025 --- ### [Ultragenyx Study Updates and New Resources](https://www.mitoaction.org/resources/ultragenyx-study-updates-and-new-resources/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=0a2z6KNHx4k&list=PLTrGsiiotyLf6HvONRoU8nb1NbTR1j7SU&index=6 **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC 2025 --- ### [FAOD Case Studies: Patient and Clinician Collaborative Problem Solving](https://www.mitoaction.org/resources/faod-case-studies-patient-and-clinician-collaborative-problem-solving/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=W0c0M260iJw&list=PLTrGsiiotyLf6HvONRoU8nb1NbTR1j7SU&index=5 **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC 2025 --- ### [Natural History Study Update](https://www.mitoaction.org/resources/natural-history-study-update/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=B9CZA39mFmA&list=PLTrGsiiotyLf6HvONRoU8nb1NbTR1j7SU&index=4 **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC 2025 --- ### [FAOD Guidelines](https://www.mitoaction.org/resources/faod-guidelines/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=82LQnqryyI8&list=PLTrGsiiotyLf6HvONRoU8nb1NbTR1j7SU&index=3 **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC 2025 --- ### [Understanding the Clinical Trial Process](https://www.mitoaction.org/resources/understanding-the-clinical-trial-process/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=w-wCwSpEg1k&list=PLTrGsiiotyLf6HvONRoU8nb1NbTR1j7SU&index=2 **Resource Categories:** Clinical Trials, Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC 2025 --- ### [Aging with a Fatty Acid Oxidation Disorder](https://www.mitoaction.org/resources/aging-with-a-fatty-acid-oxidation-disorder/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=8oUjir2QOWg&list=PLTrGsiiotyLf6HvONRoU8nb1NbTR1j7SU&index=1 **Resource Categories:** Aging, Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC 2025 --- ### [Expert Series: Understanding diseases of mitochondrial DNA maintenance](https://www.mitoaction.org/resources/expert-series-cell-danger-response-healing-copy/) **Published:** April 19, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2024/04/May-10-Bill-Copeland-1024x1024.png)This presentation will focus on the diseases that disrupt the normal process of copying our mitochondrial DNA. Dr. Copeland will summarize the genes (POLG, POLG2, TWNK, and SSBP1) that are involved in copying our mitochondrial DNA and how they participate in preventing or causing mutations in mitochondrial DNA. Then he will focus on the diseases caused by mutations in these genes and the consequences of these mutations on mitochondrial function and health. https://youtu.be/yjdM9IuXxEQ [View Slides](https://www.mitoaction.org/wp-content/uploads/2024/05/Copeland-May-10-2024compressed.pdf) **Tags:** DNA, expert series, genes, mitochondrial health **Resource Categories:** Understanding Mito **Resource Type:** Expert Series --- ### [Expert Series: Primary Mitochondrial Disease Evaluations: The evolving role of muscle biopsy](https://www.mitoaction.org/resources/expert-series-primary-mitochondrial-disease-evaluations/) **Published:** November 14, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/11/Dec-12-Peterson-1024x1024.png)Genetic testing and muscle biopsies are important tools in diagnosing mitochondrial disease, but sometimes it can be confusing how and when they are used. This presentation will seek to bring clarity around how these two different testing options are used, why clinics may choose to use one testing option over another, what information they can/cannot tell us, and how clinics use these options to determine a diagnosis of mitochondrial disease. https://youtu.be/8Rjf9gdSoEs [View Slides](https://www.mitoaction.org/wp-content/uploads/2025/12/12.12.25-Mito-Action-Lecture-JP.pdf) **Tags:** diagnosis, expert series, muscle biopsy, primary mitochondrial **Resource Categories:** Treatments **Resource Type:** Expert Series --- ### [Expert Series: FAOD For Beginners](https://www.mitoaction.org/resources/expert-series-faod-for-beginners/) **Published:** February 23, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2024/02/March-6-Arnold-1024x1024.png)This session will review how energy is produced and used in your body, and how all of the different FAOD disorders affect a patient and their metabolism. If you are new to the FAOD world and you are trying to have a better understanding as to what your/your child’s diagnosis means, come to this very important presentation! https://youtu.be/cd_bWlSAhX8?si=u7m25UliSemnQ-pG [View Slides](https://www.mitoaction.org/wp-content/uploads/2025/12/mitoaction-parent-March2024.pdf) **Tags:** beginners, expert series, faod, metabolism **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD), Understanding Mito **Resource Type:** Expert Series, FAOD Expert Series --- ### [Expert Series: Extensive DNA Sequencing in Cyclic Vomiting and Chronic Fatigue: Implication for Genetic Testing and Personalized Treatment Options](https://www.mitoaction.org/resources/expert-series-extensive-dna-sequencing/) **Published:** May 20, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2024/05/ES-June-7-Richard-Boles-1024x1024.png)In May, 2023, Dr. Boles and his research group published a scientific paper on the results of 50 people who had either whole exome or whole genome sequencing. About 30 genes were identified that are highly likely or likely to be risk factors for Cyclic Vomiting Syndrome. The vast majority of these genes involved cation (positively charge salts) channels or mitochondria (energy metabolism), suggesting that disease results from a vicious cycle of cellular over-excitation. Dr. Boles will discuss how genetic information can help find an individual’s genetic predisposition towards cyclic vomiting, and how that translates to treatment options, including those treatments generally not considered in CVS. Lastly, he will briefly discuss 18 chronic fatigue patients with extensive DNA sequencing. https://youtu.be/Bu66orEjso8 [View Slides](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoAction-genetics-CVS-ME-CFS-6-6-2024.pdf) **Tags:** CVS, cyclic vomiting, expert series **Resource Categories:** Understanding Mito **Resource Type:** Expert Series --- ### [Energy in Action Podcast Episode 147: Mindset, Mito, and the Power of Positivity](https://www.mitoaction.org/resources/energy-in-action-mindset-mito-and-the-power-of-positivity/) **Published:** December 3, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/12/Episode-147-Conway-1024x1024.png)In this uplifting episode of *Energy in Action*, host Marcy Young speaks with Greg about how mito has impacted his vision, how it shaped his diagnostic journey, and how he stays mentally and physically strong through mindset shifts, daily exercise, and community connection. **EPISODE HIGHLIGHTS** Greg Conway was diagnosed with CPEO-plus more than 20 years ago, but his outlook on life—and on mitochondrial disease—is anything but typical. In this uplifting episode of *Energy in Action*, host Marcy Young speaks with Greg about how mito has impacted his vision, how it shaped his diagnostic journey, and how he stays mentally and physically strong through mindset shifts, daily exercise, and community connection. Greg reflects on what it was like getting diagnosed in his 30s, the fear and uncertainty that followed, and the slow process of learning how to live with the disease. He shares the mental health tools that keep him going, why he never gave up biking to work, and how MitoAction support groups have helped him find kinship with others on a similar path. Along the way, Greg opens up about the emotional weight of parenting, the invisible challenges of eye-related symptoms, and what he’s learned about resilience—from himself and others. **Resources & Ways to Connect** - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, mental health, podcast **Resource Categories:** Day-to-Day with Mito **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 146: Making Nutrition Work for You: Planning Meals with Mito in Mind](https://www.mitoaction.org/resources/energy-in-action-making-nutrition-work-for-you/) **Published:** December 3, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/12/Episode-146-DiVito-1024x1024.png)In this episode, host Marcy Young welcomes Donna back to answer one of the most common—and exhausting—questions facing people with mitochondrial disease: What’s actually worth the effort when it comes to food? **EPISODE HIGHLIGHTS** Donna DiVito is a registered dietitian at the Children’s Hospital of Philadelphia and a returning guest on *Energy in Action*. In this episode, host Marcy Young welcomes Donna back to answer one of the most common—and exhausting—questions facing people with mitochondrial disease: What’s actually worth the effort when it comes to food? From grocery shopping and meal prep to what to eat when you have no energy at all, this episode is full of practical, mito-specific nutrition advice. Donna explains how to approach meal planning based on your personal budget, energy levels, and dietary needs, and she shares what to look for in protein bars, the truth about yogurt, and how to make the most of frozen foods. She offers smart swaps, time-saving tips, and thoughtful encouragement to help you feel your best without adding stress. **Resources & Ways to Connect** - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, nutrition, podcast **Resource Categories:** Day-to-Day with Mito, Nutrition **Resource Type:** Podcasts --- ### [Expert Series: Two Generations of Mitochondrial Augmentation Technology: Clinical Advances in Treating Primary Mitochondrial Disease](https://www.mitoaction.org/resources/expert-series-two-generation-of-augmentation-technology/) **Published:** October 14, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/10/Nov-6-sher-1024x1024.png)Mitochondrial Augmentation Technology (MAT) involves internalizing healthy, functional mitochondria into patient-derived cells to address mitochondrial dysfunction. Minovia has developed two generations of MAT products, studied in patients with primary mitochondrial disease in collaboration with Sheba Medical Center. In this presentation, Dr. Elad Jacoby, the treating physician, and Dr. Noa Sher, Minovia’s CSO, will discuss the promises, challenges, and clinical outcomes of this innovative therapy, providing a comprehensive review of the data to date. This session offers valuable insights for patients, families, and clinicians interested in cutting-edge mitochondrial disease therapies. https://youtu.be/biQWhuMR-aE [View Slides](https://www.mitoaction.org/wp-content/uploads/2025/11/MitoAction-Expert-Series-Nov-2025-Noa-Sher-FINAL.pdf) **Tags:** expert series, mechanical ventilation **Resource Categories:** Treatments **Resource Type:** Expert Series --- ### [Energy in Action Podcast Episode 145: Parenting with Mito- Talking About the Tough Stuff](https://www.mitoaction.org/resources/energy-in-action-how-rorys-family-built-a-life-that-works-with-lchad-copy/) **Published:** October 28, 2025 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/10/Episode-145-Devin-and-Sam-1024x1024.png) **EPISODE HIGHLIGHTS** For parents living with mitochondrial disease, one of the hardest conversations to navigate is how—and when—to talk to your kids about your diagnosis. In this deeply honest episode of *Energy in Action*, host Marcy Young speaks with genetic counselor and mito patient Devin Shuman and mito mom and nurse Sam about the emotional complexities, misconceptions, and practical realities of parenting with a rare condition. Together, they explore the judgment many parents face about their family-building decisions, the evolving medical understanding of inherited disease, and the emotional toll of trying to protect your children while also being truthful. Sam shares her journey parenting five children—four of whom show signs of mitochondrial involvement—and how her oldest daughter’s death and her other daughters’ diagnoses with spinal muscular atrophy have shaped the way her family communicates. Devin brings her dual lens as a patient and professional, reflecting on the ethics of genetic testing, the limits of certainty, and the power of age-appropriate honesty. Whether you’re a parent wondering when to open up, a caregiver navigating grief and resilience, or someone wrestling with generational fears about genetic disease, this conversation offers insight, solidarity, and space to feel your feelings without shame. **Learn More About MitoAction:** Visit MitoAction’s Website – [https://www.mitoaction.org](https://www.mitoaction.org/) Follow on Facebook – Follow on X (Twitter) – Follow on Instagram – Connect on LinkedIn – **Resources & Ways to Connect** - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, LCHADD, podcast **Resource Categories:** Caregivers & Family, Day-to-Day with Mito, Diagnosis **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 143: After the Diagnosis: Genetic Counseling & the Mito Journey with Devin](https://www.mitoaction.org/resources/energy-in-action-after-the-diagnosis-genetic-counseling/) **Published:** October 15, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/10/Episode-143-Devin-shuman-1024x1024.png)In this episode, Marcy welcomes returning guest Devin to unpack what happens *after* the diagnostic odyssey—whether you’ve received a genetic answer or are still in limbo. **EPISODE HIGHLIGHTS** In this episode, Marcy welcomes returning guest Devin to unpack what happens *after* the diagnostic odyssey—whether you’ve received a genetic answer or are still in limbo. Devin, a genetic counselor, breaks down what GCs actually do (and how they differ from physicians), why ongoing check-ins matter even years after testing, and how evolving science can change what your results mean. She explains reanalysis, mosaicism, and why new symptoms or improved technology can justify another look. They also dig into life without a confirmed variant: how to advocate for broader testing, realistic paths to specialty care, the pros/cons of clinical trial eligibility, and why belonging to the mito community can still be validating and useful while you search for answers. Devin shares practical tips for accessing genetic counseling beyond major centers (including telehealth), navigating insurance, and timing reanalysis so it’s most likely to help. **What you’ll hear:** - Genetic counselors 101: scope, training, and how they complement your care team - Why post-result follow-ups matter: updates, trials, family planning, and changing guidance - Reanalysis timing, tech improvements, and edge cases like low-level mosaicism - Strategies when testing is “negative” or inconclusive—without losing support or momentum - Access options outside big clinics, including virtual care and multi-disciplinary programs **Resources & Ways to Connect** - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, Genetic Counselor, podcast **Resource Categories:** Day-to-Day with Mito, Diagnosis, Genetic Counselors **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 144: How Rory’s Family Built a Life That Works With LCHAD](https://www.mitoaction.org/resources/energy-in-action-how-rorys-family-built-a-life-that-works-with-lchad/) **Published:** October 15, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/10/Episode-144-Rory-and-Angie-1024x1024.png)In this heartfelt conversation, Marcy sits down with mother-daughter duo Angie and Rory to talk about living with long-chain 3-hydroxyacyl-CoA dehydrogenase deficiency (LCHAD), a rare fatty acid oxidation disorder. **EPISODE HIGHLIGHTS** In this heartfelt conversation, Marcy sits down with mother-daughter duo Angie and Rory to talk about living with long-chain 3-hydroxyacyl-CoA dehydrogenase deficiency (LCHAD), a rare fatty acid oxidation disorder. Diagnosed through newborn screening, Rory has grown up navigating the challenges of her condition — from food restrictions to fatigue — with remarkable self-awareness and strength. Angie shares how the family developed “Rory Friendly” meals to make food inclusive, the importance of open communication, and how school support systems and friendships have helped Rory thrive. The conversation also explores Rory’s deep love of cheerleading, how she’s learned to self-advocate, and what it’s been like facing new complications like prolonged QT syndrome. Angie opens up about the complexities of managing care between specialties and the need for better hospital coordination. They also reflect on their experience attending the MitoAction Conference for the first time, the power of peer support, and the role of storytelling in building community. Together, they model the strength, advocacy, and connection that help families facing rare diseases feel less alone. **Resources & Ways to Connect** - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, LCHADD, podcast **Resource Categories:** Caregivers & Family, Day-to-Day with Mito, Diagnosis **Resource Type:** Podcasts --- ### [Expert Series: Managing challenges and maximizing success in chronic mechanical ventilation](https://www.mitoaction.org/resources/expert-series-managing-chronic-mechanical-ventilation/) **Published:** September 5, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/09/Oct-3-Oscar-Mayer-1024x1024.png)Mechanical ventilation can be a critical component of a comprehensive and successful plan to support a patient’s respiratory needs in helping them maximize their quality of life and reach their full potential. Doing so successfully starts with and continues to center around a discussion with a patient and his/her family about what their wishes are for the type of respiratory support and then customizing the approach accordingly. This discussion will review different approaches towards successful respiratory support for patients with mitochondrial disease. https://www.youtube.com/watch?v=e455Q3mOMeM [View Slides](https://www.mitoaction.org/wp-content/uploads/2025/10/Mito-Action-Challenge-Success-in-Ventilation.pdf) **Tags:** expert series, mechanical ventilation **Resource Categories:** Day-to-Day with Mito, Treatments **Resource Type:** Expert Series --- ### [Energy in Action Podcast Episode 142: Hearing Loss, Family, and Hope: A Student’s View on MIDD](https://www.mitoaction.org/resources/energy-in-action-hearing-loss-family-and-hope/) **Published:** September 17, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/09/Episode-142-Matt-Nuzzulo-1024x1024.png)Duke senior Matt joins host Marcy Young to share how maternally inherited diabetes and deafness (MIDD) has shaped his family—and his path in science. **EPISODE HIGHLIGHTS** Duke senior Matt joins host Marcy Young to share how maternally inherited diabetes and deafness (MIDD) has shaped his family—and his path in science. Matt describes the different ways MIDD shows up in his mother and two maternal aunts, from progressive hearing loss to diabetes and vision concerns, and how the pandemic’s masking made communication harder when lip-reading was no longer possible. He walks through their decision to pursue cochlear implants—the screening, surgery, the “switch-on,” and the hard work of relearning sound—and why that main symptom, while jarring to treat, has been life-changing. Matt also explains how his mom’s cochlear-implant work-up at the University of Pennsylvania unexpectedly led to genetic answers for the whole family, while highlighting the access and cost barriers that keep many patients from timely diagnosis. Beyond his family’s story, Matt talks about the research it inspired: studying mitochondrial biology alongside health policy to understand how hearing loss affects education and employment. He shares why he’s aiming for an MD/PhD to improve care for people like his mom and aunts, and reflects on living with uncertainty as a twin whose generation may or may not develop symptoms. This conversation is candid, thoughtful, and ultimately hopeful—proof that personal experience can fuel better science and kinder systems. **Resources & Ways to Connect** - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, hearing loss, MIDD, podcast **Resource Categories:** Caregivers & Family, Day-to-Day with Mito **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 140: Dogs for Mito Part 3: Life with a Therapy Dog](https://www.mitoaction.org/resources/energy-in-action-dogs-for-mito-part-three/) **Published:** August 20, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/08/Episode-140-Karen-1024x1024.png)In this episode of Energy in Action, host Marcy Young talks with mito patient Karen Richtman about the healing power of her therapy dog, Hugo—a gentle, long-legged Labradoodle who became both her companion and her partner in service. **EPISODE HIGHLIGHTS** In this episode of Energy in Action, host Marcy Young talks with mito patient Karen Richtman about the healing power of her therapy dog, Hugo—a gentle, long-legged Labradoodle who became both her companion and her partner in service. Karen shares how living with mitochondrial myopathy shaped her search for a calm, trainable dog; the difference between service dogs (task-trained for one handler) and therapy dogs (owner-trained to comfort others); and how she bonded with Hugo, trained through a formal 12-week class, and earned certification to visit libraries, youth programs, and in-home respite and hospice settings. Karen also explains how she sets boundaries (like masking during COVID surges) and tailors visits around Hugo’s sound sensitivity—opting for quiet spaces, small groups, and kid-led “read to the dog” or scavenger-hunt activities. At home, Hugo senses Karen’s hard days—sometimes lying gently across her to calm pain and fatigue—and out in the community he “bridges the space” between disability and possibility, giving Karen a way to volunteer sustainably. She recounts a moving hospice visit where Hugo carefully climbed onto a patient’s lap—and later curled beside him in bed—offering simple, unforgettable comfort. If you’ve wondered whether therapy-dog work could fit life with mito, Karen’s story shows how a well-matched dog, thoughtful training, and clear boundaries can create meaningful connection for others while supporting your own well-being. **Resources & Ways to Connect** - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** caregivers, energy in action, podcast **Resource Categories:** Caregivers & Family, Day-to-Day with Mito **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 139: Married to Mito](https://www.mitoaction.org/resources/energy-in-action-married-to-mito/) **Published:** August 6, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/08/Episode-139-married-to-mito-1024x1024.png)Host Marcy Young welcomes two special guests: her husband, Ira Young, and Leo Gertner, husband of active MitoAction community member Rachel P. They share how their relationships began, the moment mito entered the picture, and what “we’re in this together” looks like over years of marriage, moves, careers, and raising kids. **EPISODE HIGHLIGHTS** In this candid conversation, host Marcy Young welcomes two special guests: her husband, Ira Young, and Leo Gertner, husband of active MitoAction community member Rachel P. They share how their relationships began, the moment mito entered the picture, and what “we’re in this together” looks like over years of marriage, moves, careers, and raising kids. Leo reflects on learning about Rachel’s diagnosis early in their dating and the patience and experimentation that followed; Ira describes walking alongside Marcy through testing and a winding path to answers. Together they open up about the daily realities—planning around seating and standing, pacing weekends, dividing household and parenting tasks, navigating city vs. suburban life, and making space for rest without guilt. They talk about talking (or not) with friends and family, how kids naturally lean on each parent in different ways, the background hum of uncertainty about the future, and why community support matters. It’s an honest, empathetic look at partnership, caregiving, and choosing gratitude amid a life that isn’t always simple. **Resources & Ways to Connect** - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** caregivers, energy in action, podcast **Resource Categories:** Caregivers & Family, Day-to-Day with Mito **Resource Type:** Podcasts --- ### [You Won't Miss the Fat - Cooking One Meal for the Whole Family](https://www.mitoaction.org/resources/you-wont-miss-the-fat/) **Published:** December 6, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join FAOD parents Beth Folcher and Stephanie Harry to explore nutrition and substitutions for stress-free meal-planning that’s inclusive of the whole family. You do not have to sacrifice flavor for good nutrition. Roll up your sleeves and prepare for a cooking adventure, flexibility, and fun. Click [here](https://www.mitoaction.org/wp-content/uploads/2021/07/You-Wont-Miss-the-Fat-Tips-and-Recipes-.pdf) for more tips and tricks! https://youtu.be/QUoNhCta4LA **Resource Type:** Expert Series, FAOD Expert Series --- ### [MitoArtisan's Playtime - Course 5: Art with Low Vision for Mito Artists](https://www.mitoaction.org/resources/mitoartisans-playtime-course-5-low-vision/) **Published:** June 17, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/06/MitoArtisans-Course-5.png)**Course 5 Description and Resources** Vision loss does not have to bar you from enjoying or creating visual art. With a few modifications, mito artisans with low vision can still express themselves creatively. Join this presentation for an overview of tips and tricks for making the creative process more accessible. Learn about organization systems, positioning, sensory feedback and more. This question will also feature time for audience questions. To learn more about the artist please click [HERE.](http://joeyhernandezart.com) To review her “Adaptions Corner” blog click [HERE](https://joeyhernandezart.com/adaptation-corner-blog?blog=y). https://www.youtube.com/watch?v=z9WWS1OwdGQ [View Slides](https://www.mitoaction.org/wp-content/uploads/2025/07/Mito-Art-with-Low-Vision-.pdf) **Resource Type:** MitoArtisans Playtime --- ### [Energy in Action Podcast Episode 138: Raregivers: Turning Caregiver Burnout into Breakthroughs](https://www.mitoaction.org/resources/energy-in-action-raregivers-turning-caregiver-burnout-into-breakthrough/) **Published:** July 16, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/07/Episode-138-Cristol-1024x1024.png)Whether you’re a mitopatient, a busy parent‑caregiver, or a friend who wants to help but isn’t sure how, this episode is packed with practical tools, hard‑won wisdom, and a reminder that tending to your own heart is the first step in showing up for the people you love. **EPISODE HIGHLIGHTS** Host Marcy Young sits down with Cristol Barrett O’Loughlin—founder and CEO of RareGivers—for an honest, uplifting conversation about what it really takes to care for someone who is living with a lifelong, often‑progressive illness. Cristol shares her extraordinary back‑story as the youngest of five children, three of whom passed away from Hunter syndrome, and explains how that experience (plus her own battle with breast cancer) inspired her to create RareGivers, a global platform devoted to the emotional well‑being of patients and caregivers. She walks us through the six‑stage *RareGivers Emotional Journey Map*, why “sight, sound, taste, touch, and smell” matter for daily self‑care, and how partnerships with Microsoft and other tech leaders are translating the program into hundreds of languages. Marcy and Cristol also tackle social‑media burnout, caregiver guilt, and the power of faith, before Cristol reveals the “Hollywood ending” of her parents’ remarriage—60 years after their first wedding. Whether you’re a mitopatient, a busy parent‑caregiver, or a friend who wants to help but isn’t sure how, this episode is packed with practical tools, hard‑won wisdom, and a reminder that tending to your own heart is the first step in showing up for the people you love. **Resources & Ways to Connect** Explore RareGivers - Visit the website – [https://raregivers.global](https://raregivers.global/) - Download the Emotional Journey Map & Guidebook – - Watch Cristol’s TEDx Talk – [https://www.youtube.com/watch?v=fJNLIlkrwTw&t=11s](https://www.youtube.com/watch?v=fJNLIlkrwTw&t=11s) - Follow Raregivers on: • Facebook – • X (Twitter) – • Instagram – • LinkedIn – • YouTube – - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** caregivers, energy in action, podcast **Resource Categories:** Caregivers & Family, Day-to-Day with Mito **Resource Type:** Podcasts --- ### [Expert Series: Ins and Outs of the Mito Cocktail: Part 2 of 2](https://www.mitoaction.org/resources/expert-series-mito-cocktail-part-2/) **Published:** February 7, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/02/ES-Dec-6-Toufas-1-1024x1024.png)In the, “Ins and Outs of the Mito Cocktail: Part 2 of 2,” Dr. Toufas will expound on his December expert series where he explored how our bodies digest and absorb nutrients from food. He will dive deep into how different components of the mito cocktail work after they are absorbed in our body! If you have not watched his December Expert Series, take a moment to prepare for this webinar by watching it here! Click [HERE](https://www.mitoaction.org/resources/expert-series-ins-and-outs-mito-cocktail/) to view Part 1 of this series! https://youtu.be/_DTGtjZ7JXo [View Slides](https://www.mitoaction.org/wp-content/uploads/2025/07/MitoAction-The-Ins-and-Outs-of-the-Mito-Cocktail-Mar-2025.pdf) **Tags:** expert series, mito cocktail **Resource Categories:** Aging, Care Management, Day-to-Day with Mito, Understanding Mito **Resource Type:** Expert Series --- ### [Energy in Action Podcast Episode 137: Navigating CPEO: Talia's Search for Answers, Care, and Community](https://www.mitoaction.org/resources/energy-in-action-navigating-cpeo/) **Published:** July 2, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/07/Episode-137-talia-1024x1024.png)Together, Marcy and Talia unpack why securing genetic testing, specialty care, and even a simple referral can feel like trench warfare when you have a rare mitochondrial disease. **EPISODE HIGHLIGHTS** Mental-health therapist, mom of two, and newly diagnosed CPEO patient Talia joins host Marcy Young to share the winding, often infuriating path that finally put a name to her drooping eyelids, crushing fatigue, and stubborn back pain. She recounts how a “lazy eye” noted in theater head-shots snowballed into years of misdirection—optometrists, ophthalmologists, a false alarm for myasthenia gravis—before a neurologist labeled her condition but offered no guidance. Together, Marcy and Talia unpack why securing genetic testing, specialty care, and even a simple referral can feel like trench warfare when you have a rare mitochondrial disease. The conversation ranges from parenting with unpredictable energy, “hundred-thousand-dollar mouths” (severe dental problems common in mito), and ADHD-like brain fog to the science linking chronic stress and adverse childhood experiences (ACEs) with health outcomes—spotlighting Gabor Maté’s *When the Body Says No*. Committing to radical transparency, Talia vows to chronicle each step of her quest for a mito specialist and a full genetic work-up in future episodes, offering listeners a real-time roadmap for self-advocacy and resilience. **Resources and Ways to Connect** - **ACE (Adverse Childhood Experiences) Information & Self-Quiz** - - **Book Mentioned:***When the Body Says No* by Dr. Gabor Maté - - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** cpeo, energy in action, podcast **Resource Categories:** Care Management, Day-to-Day with Mito, Genetic Testing **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 136: Nutrition Tips for Weak Muscles and Fatigue](https://www.mitoaction.org/resources/energy-in-action-nutrition-tips/) **Published:** June 18, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/06/Episode-136-donna-divito-1024x1024.png)In this episode of *Energy in Action*, host Marcy Young and Donna explore how diet and meal timing can help patients manage common symptoms like muscle weakness, fatigue, and difficulty swallowing. **EPISODE HIGHLIGHTS** Donna DiVito is a registered dietitian at the Children’s Hospital of Philadelphia and one of the few nutrition experts with deep experience in mitochondrial disease. In this episode of *Energy in Action*, host Marcy Young and Donna explore how diet and meal timing can help patients manage common symptoms like muscle weakness, fatigue, and difficulty swallowing. They discuss the importance of meeting basic caloric needs, how antioxidants play a crucial role in mitochondrial health, and why adding simple foods like berries and nut butters can make a big difference. Donna explains how nutrition intersects with muscle strength and swallowing issues, how to work with physical and speech therapists, and what to eat during a crash. Whether you’re struggling to get enough protein, manage energy dips, or simply need smarter meal strategies, this conversation offers empowering, practical guidance for daily life with mito. **Resources and Ways to Connect** - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, fatigue, nutrition, podcast **Resource Categories:** Day-to-Day with Mito, Nutrition, Treatments **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 135: How Tisento is Advancing Mitochondrial Research](https://www.mitoaction.org/resources/energy-in-action-tisento-advancing-mitochondrial-research/) **Published:** June 12, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/06/Episode-135-Chad-Glasser-1024x1024.png)In this episode of *Energy in Action*, Chad speaks with host Marcy Young about the origins of Tisento, the science behind their lead compound Zagociguat, and why the company’s name—meaning “I hear you” in Italian—reflects their commitment to listening to patients. **EPISODE HIGHLIGHTS** Chad Glasser is the Senior Director of Clinical Research at Tisento Therapeutics, a company focused entirely on developing treatments for mitochondrial disease. In this episode of *Energy in Action*, Chad speaks with host Marcy Young about the origins of Tisento, the science behind their lead compound Zagociguat, and why the company’s name—meaning “I hear you” in Italian—reflects their commitment to listening to patients. They dive into the current PRIZM clinical trial for individuals with MELAS syndrome, including what makes this study unique: home visits, oral medication, and a crossover design that ensures all participants receive the active drug. Chad explains how the team shaped the trial based on patient interviews, and what’s next for the drug development process. For anyone living with mitochondrial disease—or considering participation in clinical research—this conversation offers clarity, hope, and a glimpse into the future of rare disease treatment. **Resources and Ways to Connect** - **Learn more about the PRIZM Trial:** - Visit [TisentoTX.com](https://www.tisentotx.com/) - Search for the PRIZM study on ClinicalTrials.gov - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, podcast, service dog **Resource Categories:** Clinical Trials, Research, Treatments **Resource Type:** Podcasts --- ### [Expert Series: All about Ketones](https://www.mitoaction.org/resources/expert-series-mito-all-about-ketones/) **Published:** March 7, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/03/ES-March-20-Gillingham-1024x1024.png)There has been interest in using Ketones as a treatment for FAOD. What exactly are ketones? This presentation will go over what ketones are, how ketones are made in the body and how ketone supplements might be a little different. We will also discuss the current evidence that ketones might be a potential treatment option and what are the key unresolved questions about ketones that are limiting the field moving forward. https://youtu.be/kR4pUzGgwYE [View Slides](https://www.mitoaction.org/wp-content/uploads/2025/03/Gillingham-Ketone-for-all-FAODs-1.pdf) **Tags:** expert series, ketones **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD), Treatments, Understanding Mito **Resource Type:** FAOD Expert Series --- ### [Expert Series: Updates on Cardiomyopathy: Diagnosis and Management in FAOD](https://www.mitoaction.org/resources/expert-series-mito-cardiomyopathy/) **Published:** April 11, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/04/April-30-Chatfield-1024x1024.png)Dr. Chatfield will discuss cardiomyopathy and LC-FAODs, share current research, the direction of which it is heading, and treatment strategies. She will also explore prolonged-QT and electrical issues, how this interacts with metabolic crisis, and ways for doctors to monitor the heart. https://youtu.be/TcEGZ_yMiqY [View Slides](https://www.mitoaction.org/wp-content/uploads/2025/05/Chatfield-Heart-FAOD-2025.pdf) **Tags:** Cardiomyopathy, expert series **Resource Categories:** Cardiology, Fatty Acid Oxidation Disorder (FAOD), Treatments **Resource Type:** FAOD Expert Series --- ### [Expert Series: Understanding Rare Genetic Variants: What Do My Results Really Mean?](https://www.mitoaction.org/resources/expert-series-mito-rare-genetic-varients/) **Published:** May 15, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/05/June-6-Russo-1024x1024.png)When a genetic variant is shared by only a handful of individuals worldwide, what does it mean for diagnosis, treatment, and research? In this session, we’ll explore the complexities of interpreting ultra-rare genetic mutations, especially in the context of mitochondrial disease. How do clinicians and geneticists determine whether a novel or rare variant is pathogenic? What frameworks are used to classify variants, and how do phenotypic data contribute to this process? Can a “variant of uncertain significance” (VUS) eventually be reclassified as clinically meaningful? Join Dr. Rossana Sanchez, Assistant Professor and Pediatric & Metabolic Geneticist at Emory Genetics, for an in-depth discussion on the scientific, clinical, and emotional challenges faced by individuals in the mitochondrial disease community who truly are “the rare among the rare.” https://youtu.be/UihoXHsAZtQ [View Slides](https://www.mitoaction.org/wp-content/uploads/2025/06/MitoAction-Expert-Series-June-2025-RLS-update-.pdf) **Tags:** expert series, rare genetic variants **Resource Categories:** Treatments **Resource Type:** Expert Series --- ### [Expert Series: Serial Casting and Toe Walking](https://www.mitoaction.org/resources/expert-series-mito-serial-casting-and-toe-walking/) **Published:** April 25, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/04/May-15-Pamela-Tucker-1024x1024.png)Do you or your child struggle with toe walking? Are you curious about why it occurs and where the concerns lie? Is toe walking reversible and what strategies do physical therapists to help with reduce it? Join Pamela Tucker as she explores these questions while also introducing us to a relatively new strategy called, “Serial Casting.” Together we will learn more about this technique, when it may be useful to explore and how it is done. https://youtu.be/mmDy8E0GJIo **Tags:** breathing, expert series, respiratory **Resource Categories:** Treatments **Resource Type:** Expert Series, FAOD Expert Series --- ### [Energy in Action Podcast Episode 134: The Fight for Educational Rights: What Mito Families Need to Know](https://www.mitoaction.org/resources/energy-in-action-educational-rights/) **Published:** May 21, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/05/Episode-134-Kuna-1024x1024.png)In this urgent and illuminating episode, Marcy Young sits down with Kuna Tavalin, Senior Policy and Advocacy Advisor at the Council for Exceptional Children, to break down what’s actually happening at the U.S. Department of Education—and what’s not. **EPISODE HIGHLIGHTS** As proposed federal changes stir confusion and anxiety, many parents of children with mitochondrial disease are left wondering what’s next for special education in America. In this urgent and illuminating episode, Marcy Young sits down with Kuna Tavalin, Senior Policy and Advocacy Advisor at the Council for Exceptional Children, to break down what’s actually happening at the U.S. Department of Education—and what’s not. Kuna explains what the Department of Education is responsible for, what it doesn’t control, and why recent executive orders have sparked panic across the disability community. She offers clear guidance for families navigating IEPs and 504 plans, demystifies enforcement and funding structures, and shares practical ways to advocate for your child right now. With warmth, honesty, and deep policy knowledge, Kuna brings clarity to a complex moment—and reminds us that informed advocacy starts with understanding your rights. **Resources and Ways to Connect** - **Learn more from the Council for Exceptional Children:** - [Council for Exceptional Children Website](https://exceptionalchildren.org/) - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, podcast, service dog **Resource Categories:** Care Management, Day-to-Day with Mito, Treatments **Resource Type:** Podcasts --- ### [Expert Series: How to Keep Airways Clear and Breathing Great - Bulbar Function and Respiratory Muscles](https://www.mitoaction.org/resources/expert-series-mito-how-to-keep-airways-clear/) **Published:** April 11, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/04/May-9-Oscar-Mayer-1024x1024.png)Patients with progressive or static neuromuscular disease, and certainly mitochondrial disease, can cause significant difficulty with airway clearance. This can be a problem on an everyday basis when a patient is well, but will become a much larger problem when a patient is acutely ill. We will discuss the link between bulbar / upper airway function, respiratory muscle weakness and airway clearance and how to optimize airway clearance and lung health. https://youtu.be/8QlLPW8tppI [View Slides](https://www.mitoaction.org/wp-content/uploads/2025/05/Bulbar-Dysfunction-MitoAction.pdf) **Tags:** breathing, expert series, respiratory **Resource Categories:** Cardiology, Fatty Acid Oxidation Disorder (FAOD), Treatments **Resource Type:** Expert Series --- ### [Energy in Action Podcast Episode 133: How to Become Paired with A Service Dog with Rachel Friedman](https://www.mitoaction.org/resources/energy-in-action-service-dogs-2/) **Published:** May 7, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/05/Episode-133-Rachel-1-1-1024x1024.png)In this episode of *Energy in Action*, Rachel joins Marcy Young to walk through her process, philosophy, and deep personal connection to her work. She shares what makes a dog suitable for service, how training evolves over time, and why a strong bond is the foundation of every successful placement. **EPISODE HIGHLIGHTS** Rachel Friedman has spent over two decades helping people with medical, psychiatric, and mobility challenges build transformative partnerships with service dogs. As the founder of A Better Pet, she combines her background in social work with her unique gift for animal behavior to match each client with their ideal “make and model” — a dog trained not just to assist, but to connect. In this episode of *Energy in Action*, Rachel joins Marcy Young to walk through her process, philosophy, and deep personal connection to her work. She shares what makes a dog suitable for service, how training evolves over time, and why a strong bond is the foundation of every successful placement. Rachel also opens up about her own unexpected health scare, and how her service dog helped her regain independence after a stroke. Whether you’ve been curious about service dogs or are considering one for yourself or a loved one, this episode is full of thoughtful insight, hard-earned wisdom, and heart. **Resources and Ways to Connect** - [Visit A Better Pet’s Website](https://abetterpet.com) - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, podcast, service dog **Resource Categories:** Care Management, Day-to-Day with Mito, Treatments **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 132: Honoring Sandra Russell Through 15 Years of Derby Day](https://www.mitoaction.org/resources/energy-in-action-derby-day/) **Published:** April 16, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/04/Episode-132-Jonathan-1024x1024.png)In this episode of *Energy in Action*, Jonathan shares how Derby Day began as a backyard tradition and grew into a high-energy Boston fundraiser drawing hundreds of guests. He walks us through the planning process, the meaningful impact of the event, and the incredible role it plays in supporting families affected by mito. **EPISODE HIGHLIGHTS** When Jonathan Russell lost his mother Sandra to mitochondrial disease, he and his family turned grief into action—launching what would become one of MitoAction’s most cherished annual events. Now in its 15th year, the Sandra K Russell Derby Day Benefit is a celebration of community, hope, and resilience. In this episode of *Energy in Action*, Jonathan shares how Derby Day began as a backyard tradition and grew into a high-energy Boston fundraiser drawing hundreds of guests. He walks us through the planning process, the meaningful impact of the event, and the incredible role it plays in supporting families affected by mito. Listeners will learn how the event supports MitoAction’s work year-round and how a portion of proceeds fund the Matthew Hardy Camper Fund—giving kids with mitochondrial disease a chance to experience the magic of summer camp. Whether you’ve attended Derby Day or are hearing about it for the first time, this episode highlights why it’s so much more than just a party—it’s a powerful tribute, a fundraising lifeline, and a joyful reminder of what we can accomplish when we come together. **Resources and Ways to Connect with MitoAction:** - [Learn more about Derby Day](https://www.mitoaction.org/events/derbyday/) - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, Genetic Counselor, podcast **Resource Categories:** Awareness, Caregivers & Family, Psychology **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 130: Faced with Medical Kidnapping: Skyler’s Story](https://www.mitoaction.org/resources/energy-in-action-faced-with-medical-kidnapping/) **Published:** March 19, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/03/Episode-130-skylar-1024x1024.png)In this episode of *Energy in Action*, Skyler bravely recounts her journey from a childhood filled with chronic illness to the moment she was taken from her family, placed into foster care, and forced to endure psychological manipulation by medical professionals who refused to believe her pain was real. **EPISODE HIGHLIGHTS** At just 13 years old, Skyler’s life took a harrowing turn when she was forcibly separated from her parents and accused of fabricating her illness. Despite years of documented medical history, suspected mitochondrial disease, and a range of debilitating symptoms, doctors and authorities dismissed her condition—leading to a traumatic case of medical kidnapping. In this episode of *Energy in Action*, Skyler bravely recounts her journey from a childhood filled with chronic illness to the moment she was taken from her family, placed into foster care, and forced to endure psychological manipulation by medical professionals who refused to believe her pain was real. She shares the devastating impact of being wrongly accused, the emotional toll on her family, and how she ultimately fought to regain control over her own medical narrative. Skyler’s resilience shines through as she reflects on the lasting trauma of the experience, her ongoing battle with mitochondrial disease, and her determination to move forward. Her story serves as a powerful warning about the dangers of misdiagnosing medical child abuse—and a testament to the importance of patient advocacy, self-trust, and never giving up the fight for proper care. **Resources and Ways to Connect with MitoAction:** - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, Genetic Counselor, podcast **Resource Categories:** Awareness, Caregivers & Family, Psychology **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 131: The Lifesaving Bonds Between Service Dogs and Their Mito Warriors](https://www.mitoaction.org/resources/energy-in-action-service-dogs/) **Published:** April 2, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/04/Episode-131-1024x1024.png)In this episode of *Energy in Action*, April and Jen share their powerful experiences with their service dogs, Bailey and Lexi. From the moment of choosing the right dog to the challenges and rewards of doing the training themselves, both women reveal how their dogs have become vital members of their medical team. **EPISODE HIGHLIGHTS** Living with mitochondrial disease means navigating a life filled with uncertainty, medical complexity, and physical limitations. For April and Jen, two women in the MitoAction community, the decision to bring a service dog into their lives became a turning point—one that offered not just support, but survival. In this episode of *Energy in Action*, April and Jen share their powerful experiences with their service dogs, Bailey and Lexi. From the moment of choosing the right dog to the challenges and rewards of doing the training themselves, both women reveal how their dogs have become vital members of their medical team. Jen recalls how Lexi detected blood clots and infections before doctors could—ultimately saving her life. April opens up about how Bailey provides walking stability, physical grounding during anxiety attacks, and comfort through complex medical procedures. They also discuss the real-world challenges of having a service dog in public spaces, the emotional depth of the bond they’ve formed, and the critical role these dogs play in managing not just their symptoms, but their dignity and independence. Jen also speaks candidly about the profound grief she and Lexi endured after the tragic loss of her wife—and how they’ve leaned on each other in the months since. Their stories are a powerful reminder of the intelligence, intuition, and love service dogs can bring—and the strength that comes from finding the right partner to walk beside you through illness and beyond. **Resources and Ways to Connect with MitoAction:** - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, Genetic Counselor, podcast **Resource Categories:** Awareness, Caregivers & Family, Psychology **Resource Type:** Podcasts --- ### [Expert Series: Introducing and Implementing Principles in Aquatic Therapy](https://www.mitoaction.org/resources/expert-series-mito-aquatic-therapy/) **Published:** March 7, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/03/April-4-Pamela-Tucker-1024x1024.png)Aquatic physical therapy provides a supportive environment to address a wide range of functional goals such as muscle strengthening, enhancing postural control, increasing core stability, reducing muscle stiffness, and facilitating mobility. This discussion will review the principles of exercise in an aquatic environment and explore how aquatic therapy can positively impact your health with a mitochondrial condition. https://youtu.be/gWlfUo3x64g [View Slides](https://www.mitoaction.org/wp-content/uploads/2025/03/Aquatic-Physical-Therapy-Tucker.pdf) **Tags:** expert series, therapy **Resource Categories:** Treatments **Resource Type:** Expert Series --- ### [Expert Series: Understanding the Pediatrician's Role in the "Growing Up Years"](https://www.mitoaction.org/resources/expert-series-growing-up-years/) **Published:** February 6, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/02/ES-Feb-20-Nale-1024x1024.png) When you have a child with a rare disease, who sees so many different doctors, it can feel challenging to know how your pediatrician fits into the picture! How do you use this very special doctor to help you navigate your questions, collaborate with other doctors, and move through the everyday life of navigating a rare disease. Join Dr. Daniel Nale as he provides practical tips and advice for patients and clinicians, after walking with an FAOD family from infancy through adulthood. https://youtu.be/0qIT4BXXpi8 [View Slides](https://www.mitoaction.org/wp-content/uploads/2025/02/Understanding-the-Pediatricians-Role-in-the-_Growing-Up-Years_.pdf) **Tags:** children, expert series, pediatrician **Resource Categories:** Aging, Care Management, Day-to-Day with Mito, Understanding Mito **Resource Type:** Expert Series, FAOD Expert Series --- ### [Energy in Action Podcast Episode 129: Mitochondrial Shifts: A Conversation with Genetic Counselor Devin Shuman](https://www.mitoaction.org/resources/energy-in-action-mitochondrial-shifts/) **Published:** March 5, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/03/Episode-129-devin-1024x1024.png)Join host Marcy Young with guest Devin Shuman —a genetic counselor who lives with a rare form of mitochondrial DNA depletion syndrome. Tune in as Devin shares her unique blend of medical knowledge and personal experience with the mito community. **EPISODE HIGHLIGHTS** In this episode of *Energy in Action*, host Marcy Young introduces Devin Shuman—a genetic counselor who lives with a rare form of mitochondrial DNA depletion syndrome and brings a unique blend of medical knowledge and personal experience to the mito community. Devin shares her diagnostic odyssey, the challenge of navigating healthcare systems that have evolved rapidly in the last decade, and how genetic testing has both expanded and restricted access to appropriate care. Together, Marcy and Devin discuss major shifts in how primary and secondary mitochondrial disease are defined, the growing emphasis on genetic confirmation, and the hope that more nuanced research will eventually help those stuck in diagnostic limbo. Devin’s down-to-earth perspective and empathetic approach highlight the importance of open communication between providers and patients. Tune in for a candid look at life with mito, the complexities of genetic testing, and the community resources that keep hope alive. **Resources and Ways to Connect with MitoAction:** - **Join Wondering Wednesdays with Devin** - A monthly, informal webinar where you can ask Devin genetic-related questions in real-time. - [Wondering Wednesdays – ](https://www.mitoaction.org/programs-support/)[MitoAction](https://www.mitoaction.org/education/monthly-expert-series/wondering-wednesdays/) - [Learn More About Dalia’s Wish](https://www.mitoaction.org/programs-support/mitoaction-programs/dalias-wish/) - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, Genetic Counselor, podcast **Resource Categories:** Care Management, Genetic Counselors **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 128: The Superhero Project's Mission to Empower Kids](https://www.mitoaction.org/resources/energy-in-action-the-superhero-project/) **Published:** March 5, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/03/Episode-128-1024x1024.png)Join host Marcy Young with guests Lisa Kollins and Taryn Cozzy from The Super Hero Project as they walk us through their powerful process: from the initial strengths-based interview with each child to the creation of custom superhero posters designed by volunteer artists worldwide. **EPISODE HIGHLIGHTS** In this uplifting episode of *Energy in Action*, host Marcy Young is joined by Lisa Kollins and Taryn Cozzy of The Superhero Project—a nonprofit that uses art to highlight the strengths and identities of children and teens living with serious illnesses and disabilities. Lisa, the project’s founder, and Taryn, the creative director, walk listeners through their powerful process: from the initial strengths-based interview with each child to the creation of custom superhero posters designed by volunteer artists worldwide. By focusing on the child’s favorite activities, unique traits, and hopes for positive change, each poster becomes more than just art—it’s a celebration of individuality and resilience, reminding families of the bright, imaginative spirit that endures beyond any medical diagnosis. Tune in to hear heartwarming stories of kids stepping into their heroic alter egos, and learn how your family can be a part of The Superhero Project’s global community of kindness. **Resources and Ways to Connect with MitoAction:** - Sign Up Your Child for a Superhero Poster (Free Service): [The Superhero Project](https://shpkids.org/) - [Learn More About Dalia’s Wish](https://www.mitoaction.org/programs-support/mitoaction-programs/dalias-wish/) - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** children, energy in action, nonprofits, podcast **Resource Categories:** Advocacy **Resource Type:** Podcasts --- ### [Expert Series: Ins and Outs of the Mito Cocktail: Pat 1 of 2](https://www.mitoaction.org/resources/expert-series-ins-and-outs-mito-cocktail/) **Published:** November 21, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2024/11/ES-Dec-6-Toufas-1024x1024.png)In the, “Ins and Outs of the Mito Cocktail: Part 1 of 2,” Dr. Toufas will explore how our bodies digest and absorb nutrients from food, and discuss what difficulties exist in getting supplements/nutrients into our cells and mitochondria. He will take a deeper look at the Krebs Cycle and Electron Transport Chain, explain which vitamins and cofactors are used in these processes, and discuss ROS (Reactive Oxygen Species)/Oxidative damage. The goal of Part 1 is to establish a better understanding of nutrition and food digestion/absorption, to paint a clearer picture of barriers encountered in supplemental therapy. Dr. Toufas will join us back again March 7, 2025 with part two of this series, diving deeper into how different components of the mito cocktail work after they are absorbed in our body! https://youtu.be/xTRMDJpHFhQ [View Slides](https://www.mitoaction.org/wp-content/uploads/2025/02/MitoAction-The-Ins-and-Outs-of-the-Mito-Cocktail-Dec-2024.pdf) **Tags:** expert series, mito cocktail **Resource Categories:** Pyruvate Dehydrogenase Complex Deficiency (PCDC), Treatments, Understanding Mito **Resource Type:** Expert Series --- ### [GAII: Finding the Balance](https://www.mitoaction.org/resources/balance/) **Published:** January 26, 2022 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction and Metabolic Dietitian, Casey Burns to learn tips on navigating diets and finding the balance with GAII. We will tackle topics related to nutrition, balancing low-fat/low-protein diets, nutritional needs for those with and without a g-tube, and much more! A question and answer time will follow the presentation! https://youtu.be/Hu6pJp-97qY **Resource Categories:** Nutrition **Resource Type:** Expert Series, FAOD Expert Series --- ### [Story Moments: Hearing From You! A non-traditional Family/Patient Panel](https://www.mitoaction.org/resources/story-moments-hearing-from-you-a-non-traditional-family-patient-panel/) **Published:** July 28, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=tYfUR70do0k&list=PLTrGsiiotyLcln_p72zZrZrds4P7VYH56&index=2 **Resource Type:** IMC, IMC 2024 --- ### [Hospital Woes: Understanding Medical Trauma and Resilience](https://www.mitoaction.org/resources/hospital-woes-understanding-medical-trauma-and-resilience/) **Published:** July 28, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=oGM2Ki_8mKU&list=PLTrGsiiotyLcln_p72zZrZrds4P7VYH56&index=5 **Resource Type:** IMC, IMC 2024 --- ### [FAODs, Puberty, and Reproductive Health](https://www.mitoaction.org/resources/faods-puberty-and-reproductive-health/) **Published:** July 27, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=2oIFQm9Fl-k&list=PLTrGsiiotyLcln_p72zZrZrds4P7VYH56&index=11 **Resource Type:** IMC, IMC 2024 --- ### [Logic, Benefit, Harm: Understanding Vitamins and Supplements](https://www.mitoaction.org/resources/logic-benefit-harm-understanding-vitamins-and-supplements/) **Published:** July 27, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=01hjNmcBsfM&list=PLTrGsiiotyLcln_p72zZrZrds4P7VYH56&index=12 **Resource Type:** IMC, IMC 2024 --- ### [Building and Maintaining Strength with an FAOD](https://www.mitoaction.org/resources/building-and-maintaining-strength-with-an-faod/) **Published:** July 27, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=Pohs5x6tv9s&list=PLTrGsiiotyLcln_p72zZrZrds4P7VYH56&index=10 **Resource Type:** IMC, IMC 2024 --- ### [Expert Panel](https://www.mitoaction.org/resources/expert-panel/) **Published:** July 27, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=lirfRXvvr2U&list=PLTrGsiiotyLcln_p72zZrZrds4P7VYH56&index=9 **Resource Type:** IMC, IMC 2024 --- ### [FAOD Cooking 101](https://www.mitoaction.org/resources/faod-cooking-101/) **Published:** July 27, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=0cIHD5U8qGU&list=PLTrGsiiotyLcln_p72zZrZrds4P7VYH56&index=8 **Resource Type:** IMC, IMC 2024 --- ### [Using Mouse Models to Study LCHADD Chorioretinopathy and Other FAODs](https://www.mitoaction.org/resources/using-mouse-models-to-study-lchadd-chorioretinopathy-and-other-faods/) **Published:** July 28, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=feezAqRk1FE&list=PLTrGsiiotyLcln_p72zZrZrds4P7VYH56&index=7 **Resource Type:** IMC, IMC 2024 --- ### [Who’s Who and What’s What: Navigating Hospitalizations for Pediatric and Adult Patients](https://www.mitoaction.org/resources/whos-who-and-whats-what-navigating-hospitalizations-for-pediatric-and-adult-patients/) **Published:** July 27, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=s1ImHMRrL90&list=PLTrGsiiotyLcln_p72zZrZrds4P7VYH56&index=12 **Resource Type:** IMC, IMC 2024 --- ### [FAOD: The Effect on Families and Food Relationships](https://www.mitoaction.org/resources/faod-the-effect-on-families-and-food-relationships/) **Published:** July 28, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=K3Im88cCsm0&list=PLTrGsiiotyLcln_p72zZrZrds4P7VYH56&index=3 **Resource Type:** IMC, IMC 2024 --- ### [Understanding Rhabdomyolysis](https://www.mitoaction.org/resources/understanding-rhabdomyolysis/) **Published:** July 28, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=TNx6kJMLpBU&list=PLTrGsiiotyLcln_p72zZrZrds4P7VYH56&index=4 **Resource Type:** IMC, IMC 2024 --- ### [Clinician Panel](https://www.mitoaction.org/resources/clinician-panel/) **Published:** February 26, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=cYRTQUH8h6E&list=PLTrGsiiotyLcln_p72zZrZrds4P7VYH56&index=1 **Resource Type:** IMC, IMC 2024 --- ### [Expert Series: Hope on the Horizon: The Vital Role of Patients in Clinical Research](https://www.mitoaction.org/resources/expert-series-hope-on-the-horizon/) **Published:** January 7, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/01/ES-Feb-7-Goldstein-4-1024x1024.png)There is unprecedented momentum in the mitochondrial disease clinical trial landscape, and the patient community plays a vital role in ensuring these trials have the potential to lead to new and effective treatments. This expert series aims to demystify clinical trial participation and answer your most pressing questions. Dr. Amy Goldstein, Clinical Director of the Mitochondrial Medicine Frontier Program will discuss what to expect if you participate in clinical trials, and highlight their importance in the drug approval process, and Chad Glasser, Sr. Director of Clinical Research at Tisento Therapeutics, will discuss the actively recruiting PRIZM MELAS study. https://youtu.be/ww_k06vb7X8 **Tags:** clinical trials, drug approval, expert series, new treatment **Resource Categories:** Clinical Trials, Treatments, Understanding Mito **Resource Type:** Expert Series --- ### [Energy in Action Podcast Episode 127: From Diagnosis to Dalia's Wish: A Loving Family's Journey With Mito](https://www.mitoaction.org/resources/energy-in-action-from-diagnosis-to-dalias-wish/) **Published:** February 5, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/02/Episode-127-Angela-Schneider-1024x1024.png)Join host Marcy Young and Angela Schneider, a devoted mother of four, whose daughter Olivia lives with a rare form of mitochondrial disease. Learn more about Olivia’s diagnosis journey and their family’s Dalia’s Wish Disney wish trip In this episode of the Energy in Action Podcast. **EPISODE HIGHLIGHTS** In this moving episode of *Energy in Action*, host Marcy Young speaks with **Angela Schneider**, a devoted mother of four, whose daughter Olivia lives with a rare form of mitochondrial disease. Angela shares how Olivia’s diagnosis brought life as they knew it to a halt—leading Angela to leave her full-time job in order to coordinate endless medical appointments, navigate complex school accommodations, and manage Olivia’s frequent surgeries and mobility challenges. Angela recounts the family’s transformational experience with **Dalias’s Wish**, a MitoAction program that grants wish trips to families affected by mito. Traveling to Give Kids the World Village in Orlando proved not only magical for Olivia and her siblings but also a much-needed reminder that joy can still bloom amidst daily health battles. Angela’s unwavering positivity and devotion to her children shine throughout, offering listeners a poignant glimpse into the resilience and hope that fuel families living with mitochondrial disease. **Resources and Ways to Connect with MitoAction:** - [Learn More About Dalia’s Wish](https://www.mitoaction.org/programs-support/mitoaction-programs/dalias-wish/) - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** dalias wish, diagnosis, diagnosis journey, energy in action, podcast **Resource Categories:** Caregivers & Family, Patient Stories **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 126: Raising Warriors: A Mother’s Journey with VLCAD](https://www.mitoaction.org/resources/energy-in-action-raising-warriors/) **Published:** January 22, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/01/Episode-126-1-1024x1024.png)Join host Marcy Young and Megan Crenshaw, a devoted mother of two young boys who both have VLCAD (Very Long-Chain Acyl-CoA Dehydrogenase Deficiency) in this heartfelt episode of the Energy in Action Podcast. **EPISODE HIGHLIGHTS** In this heartfelt episode of *Energy in Action*, host Marcy Young chats with Megan Crenshaw, a devoted mother of two young boys who both have VLCAD (Very Long-Chain Acyl-CoA Dehydrogenase Deficiency). Megan shares the unique challenges of navigating rare disease parenting during a global pandemic—from midnight feedings and managing strict dietary regimens to balancing the desire for her children’s active lives with the ever-present worry about their health. Through vulnerability and humor, Megan describes the joy she finds in her sons’ resilience and how she’s learned to give herself grace when life doesn’t match the expectations she once had. She also opens up about seeking a community that understands, celebrating her discovery of MitoAction, and embracing the power of advocacy both for her family and others in the mitochondrial disease community. **Resources and Ways to Connect with MitoAction:** - [Meg’s Podcast](https://podcasts.apple.com/ie/podcast/megs-reading-room/id1761060886) - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, mitochondrial disease care, podcast **Resource Categories:** Day-to-Day with Mito, Patient Stories, Understanding Mito **Resource Type:** Podcasts --- ### [2025 Mito Town Meeting](https://www.mitoaction.org/resources/2025-mito-town-meeting/) **Published:** December 13, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The annual mito town meeting is our way of kicking off the new year by sharing all that we have in store for the next 12 months! We will hear from organizations and companies around the globe that have special opportunities, programs, and projects for patients and families affected by mitochondrial disease. https://www.youtube.com/watch?v=bVSlduCFCFg Timestamps with speaker and company names available in the video! #### Resources Shared During Meeting For your convenience, these are the resources and links that were shared in the chat during the meeting. **01:02:04 – Kira Mann,** CEO: INFORM website: [https://informnetwork.org](https://informnetwork.org/) **01:02:13 – Stephanie Harry,** Patient Support Coordinator: **01:07:56 – Alex Fowler,** Program Coordinator: Website: [www.metabolicsupportuk.org](http://www.metabolicsupportuk.org/) **01:08:22 – Alex Fowler,** Program Coordinator: Long-chain fatty acid oxidation disorders (LC-FAOD) questionnaire: **01:10:54 – Alex Fowler,** Program Coordinator: The Living Well Movement & Symposium: **01:11:42 – Alex Fowler,** Program Coordinator: Thoughts into Action Research Project: **01:12:02 – Alex Fowler,** Program Coordinator: Information about the assessment of triheptanoin for treating LC-FAODS **01:21:34 – Kira Mann,** CEO: [www.khondrion.com](http://www.khondrion.com/) **01:26:43 – Kira Mann, CEO:** [https://www.umdf.org](https://www.umdf.org/) For Support: . UMDF Conference: UMDF Events: **01:38:43 – Stephanie Harry,** Patient Support Coordinator: SpectrumNeeds and QNeeds were in the study. [www.Neuroneeds.com](http://www.neuroneeds.com/) **01:39:15 – Cristy Balcells,** UCB: **01:42:58 – Alex Fowler,** Program Coordinator: [www.MitoWorld.org](http://www.mitoworld.org/) **01:45:20 – Stephanie Harry,** Patient Support Coordinator: **01:48:09 – Toni Mees,** Metabolic Support UK: **01:52:40 – Ashley Rowland,** CureARS: **01:58:20 – Kira Mann,** CEO: [www.mitopatients.org](http://www.mitopatients.org/) **01:59:27 – Alex Fowler,** Program Coordinator: [www.tisentotx.com](http://www.tisentotx.com/) **01:59:31 – Alex Fowler,** Program Coordinator: **02:04:58 – Alex Fowler,** Program Coordinator: **02:05:24 – Alex Fowler,** Program Coordinator: **02:16:26 – Dave Penake:** [www.saolrx.com](http://www.saolrx.com/) **02:23:00 – Cure LBSL** | Melody Kisor: [www.curelbsl.org](http://www.curelbsl.org/) **02:23:05 – Cure LBSL** | Melody Kisor: **02:33:02 – Alex Fowler,** Program Coordinator: **02:49:55 – Shelley Bowen:** Barth Syndrome Foundation Advocacy Timeline **02:54:47 – Emily Grandahl,** Marketing Coordinator: Barth Syndrome Foundation FDA Meeting Video: **02:55:59 – Katie Landes** – Stealth BioTherapeutics: The full AdComm meeting can be found here: **03:06:17 – Alex Fowler,** Program Coordinator: **03:06:32 – Alex Fowler,** Program Coordinator: **03:06:43 – Alex Fowler,** Program Coordinator: **03:06:51 – Alex Fowler,** Program Coordinator: **03:06:59 – Alex Fowler,** Program Coordinator: **03:07:49 – Alex Fowler,** Program Coordinator: If you need support or have questions don’t hesitate to reach out to Stephanie Harry, Patient Support Coordinator via our Mito411 support line at (888)- 648-6411 or via email at **03:07:51 – Emily Holl** (she/her), Sibling Support Project: SibNet on Facebook for adult sibs: **03:08:05 – Alex Fowler,** Program Coordinator: Check out our weekly support calls by going here: **03:08:24 – Emily Holl** (she/her), Sibling Support Project: The Sibling Leadership Network for adult siblings: **03:08:48 – Emily Holl** (she/her), Sibling Support Project: **03:09:10 – Emily Holl** (she/her), Sibling Support Project: And our website [www.siblingsupport.org](http://www.siblingsupport.org/) **03:09:59 – Alex Fowler,** Program Coordinator: To sign up to become a “MitoChampion” reach out to Stephanie Harry at **03:11:13 – Alex Fowler,** Program Coordinator: To check out our Annual Art Show click here: **03:12:10 – Alex Fowler,** Program Coordinator: To see past MitoArtisan Playtime Events: **03:12:57 – Alex Fowler,** Program Coordinator: To check out our Podcast Series with Marcy Young: **03:14:10 – Alex Fowler,** Program Coordinator: Sign up for Wondering Wednesdays with Devin Shuman by going here: **03:15:03 – Alex Fowler,** Program Coordinator: Learn more about Marcel’s Way: **03:15:15 – Alex Fowler,** Program Coordinator: FAOD Conference is July 25-27: **03:24:12 – Emily Grandahl,** Marketing Coordinator: MyMito App: **03:25:12 – Emily Grandahl,** Marketing Coordinator: Matthew Harty Camper Find & Scholarship: **03:25:28 – Emily Grandahl,** Marketing Coordinator: Dalia’s Wish: **03:26:26 – Emily Grandahl,** Marketing Coordinator: Energy Walks: **03:31:07 – Alex Fowler,** Program Coordinator: More information on KL1333 FALCON study: **03:31:20 – Alex Fowler,** Program Coordinator: Open access publication of KL1333 phase 1 study in Mito patients: #### 2025 Meeting Agenda [2025-Mito-Town-Meeting-Agenda-Instructions.docx-Google-Docs](https://www.mitoaction.org/wp-content/uploads/2024/11/2025-Mito-Town-Meeting-Agenda-Instructions.docx-Google-Docs.pdf) **Tags:** expert series, mito town meeting, research, Town Meeting **Resource Categories:** Research, Town Hall Meetings **Resource Type:** Expert Series --- ### [Energy in Action Podcast Episode 125: From Nurse to Advocate: Tania’s Mito Experience](https://www.mitoaction.org/resources/energy-in-action-from-nurse-to-advocate/) **Published:** January 8, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2025/01/Episode-125-1024x1024.png)In this powerful episode of Energy in Action, host Marcy Young welcomes Tania, a resilient mito patient, as she shares her compelling journey of navigating life with a rare and challenging diagnosis. Tania recounts her transition from a fulfilling career as a pediatric nurse to becoming an advocate and educator within the mitochondrial disease community. **EPISODE HIGHLIGHTS** In this powerful episode of Energy in Action, host Marcy Young welcomes Tania, a resilient mito patient, as she shares her compelling journey of navigating life with a rare and challenging diagnosis. Tania recounts her transition from a fulfilling career as a pediatric nurse to becoming an advocate and educator within the mitochondrial disease community. Together, they explore Tania’s early symptoms, the frustrations of searching for answers, and her eventual clinical diagnosis of mitochondrial disease despite inconclusive genetic testing. Tania opens up about the emotional toll of stepping away from her career, the grief of losing aspects of her identity, and the unique ways she’s found to give back—whether through mentoring medical students, supporting her family, or educating others about rare diseases. This heartfelt conversation provides hope and insight for those facing similar challenges and highlights the importance of resilience, connection, and advocacy in the face of uncertainty. **Resources and Ways to Connect with MitoAction:** - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) - [Connect with MitoAction on LinkedIn](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, mitochondrial disease care, podcast **Resource Categories:** Day-to-Day with Mito, Patient Stories, Understanding Mito **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 124: Dateability: A Dating App for the Disability and Chronic Illness Community](https://www.mitoaction.org/resources/energy-in-action-dateability/) **Published:** December 18, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2024/12/Episode-124-1024x1024.png)Whether you’re looking for love, friendship, or community, this episode will inspire you to explore *Dateability* and celebrate the movement it represents. **EPISODE HIGHLIGHTS** In this episode of *Energy in Action*, host Marcy Young sits down with sisters **Jacqueline and Alexa Child**, co-founders of *Dateability*, the first dating app designed for people with disabilities and chronic illnesses. Together, they share the story of how personal experiences with rejection, stigma, and chronic illness inspired them to create a safe, inclusive platform for connection. Jacqueline opens up about her journey with chronic illness and how traditional dating apps fell short in addressing the realities of dating with a disability. Alexa reflects on their mission to bring dating back to its roots—fostering meaningful, authentic connections without judgment. From launching the app with no prior tech experience to gaining national media recognition, the sisters explain how *Dateability* is transforming lives and breaking down societal stigmas. Whether you’re looking for love, friendship, or community, this episode will inspire you to explore *Dateability* and celebrate the movement it represents. **Guest Info and Links:** - [Create a profile at Dateability](https://info.dateabilityapp.com/) - Download the app on[ Apple](https://apps.apple.com/us/app/dateability/id6443474660) or [Android](https://play.google.com/store/apps/details?id=com.dateabilityapp&hl=en&gl=US) - Follow Dateability on Instagram:[ @DateabilityApp](https://www.instagram.com/dateabilityapp/) - Explore Dateability on[ YouTube](https://www.youtube.com/@dateabilityapp) for tutorials and more **Tags:** energy in action, mitochondrial disease care, podcast **Resource Categories:** Day-to-Day with Mito, Patient Stories, Understanding Mito **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 123: A Family of Mito Warriors who PUBLISH!](https://www.mitoaction.org/resources/energy-in-action-mito-warriors-who-publish/) **Published:** December 4, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2024/12/Episode-123-1024x1024.png)Tune in to hear J.B.’s incredible story, and don’t forget to check out *Sports Impossible* to support this amazing mother-son duo. Their journey is a testament to the power of perseverance, creativity, and community! **EPISODE HIGHLIGHTS** In this episode of *Energy in Action*, host Marcy Young welcomes J.B. McGee, a mother and advocate whose story sheds light on the complex journey of living with mitochondrial disease. J.B. shares the challenges her family faced in securing diagnoses for her two sons, Noah and Jonah, and how they overcame countless hurdles, including medical gaslighting and systemic misunderstandings. J.B. discusses her family’s experience with navigating healthcare, fighting for validation, and ultimately finding hope and understanding. She also introduces *Sports Impossible*, a heartwarming book she co-authored with her son Noah, inspired by his journey to find a sport he could play despite his physical limitations. This creative project not only gave Noah a sense of empowerment but also highlights the resilience of the mitochondrial community. **Guest Info and Links:** [Purchase *Sports Impossible* on Amazon](https://www.amazon.com/Sports-Impossible-J-P-McGee-ebook/dp/B01945JIH2/ref=sr_1_1?crid=1V6ESRZPLQAJY&dib=eyJ2IjoiMSJ9.y0CMMGNrerGSZfNN982azQ.jBIymfoEDvQ5Gj0fD3wHa79tSwV2br2WEnxUWBLXk8s&dib_tag=se&keywords=jp+mcgee+sports+impossible&qid=1718723363&sprefix=jp+mcgee+sports+impossiblw%2Caps%2C130&sr=8-1) [J.B. McGee’s Letter to Congress on Mitochondrial Disease](https://themighty.com/topic/mitochondrial-disease/letter-to-congress-from-12-year-old-with-mitochondrial-disease/) **Tags:** energy in action, mitochondrial disease care, podcast **Resource Categories:** Day-to-Day with Mito, Patient Stories, Understanding Mito **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 122: Our Space- Youth Support Group](https://www.mitoaction.org/resources/energy-in-action-out-space/) **Published:** November 20, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [](https://app.castos.com/podcasts/18538) ![](https://www.mitoaction.org/wp-content/uploads/2024/11/Episode-122-Alex-1024x1024.png)Tune in to hear Alex’s incredible story and learn how *Our Space* is making a difference for young adults in the mitochondrial disease community. **EPISODE HIGHLIGHTS** In this episode of *Energy in Action*, host Marcy Young sits down with Alex Salser, a passionate advocate and volunteer with MitoAction, to discuss her inspiring journey of overcoming challenges with LCHAD, a mitochondrial disease. Alex shares her recent milestone of graduating college in just three years, despite numerous hospitalizations, and how she continues to fight for the life she wants to live. Alex also introduces *Our Space*, the young adult support group she leads through MitoAction, designed to help those aged 18 to 30 connect, share, and navigate life with mitochondrial disease. From relationships and careers to education and insurance, *Our Space* fosters understanding, encouragement, and friendship for those facing similar challenges. **Resources and Ways to Connect with MitoAction:** - [Learn more about Our Space support calls](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/our-space/) - [Visit MitoAction’s website](https://www.mitoaction.org/) - [Follow MitoAction on Facebook](https://www.facebook.com/mitoaction) - [Follow MitoAction on Twitter](https://twitter.com/mitoaction) - [Follow MitoAction on Instagram](https://www.instagram.com/mitoaction/) **Tags:** energy in action, mitochondrial disease care, podcast **Resource Categories:** Day-to-Day with Mito, Patient Stories, Understanding Mito **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 121: April - Mito and Social Media Extraordinaire](https://www.mitoaction.org/resources/energy-in-action-mito-social-media/) **Published:** November 20, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [](https://app.castos.com/podcasts/18538) ![](https://www.mitoaction.org/wp-content/uploads/2024/11/Episode-121-April-1024x1024.png) **Tags:** energy in action, mitochondrial disease care, podcast, research **Resource Categories:** Day-to-Day with Mito, Treatments, Understanding Mito **Resource Type:** Podcasts --- ### [Expert Series: Pyruvate Dehydrogenase Complex Deficiency Essentials: including current trials/research and prospects for newborn screening](https://www.mitoaction.org/resources/expert-series-pyruvate-dehydrogenase-complex-disorder/) **Published:** October 17, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2024/10/ES-Nov-1-Bedoyan-1024x1024.png)Dr. Bedoyan will present the essentials for understanding pyruvate dehydrogenase complex deficiency (PDCD) and detail current clinical trials and therapeutics research for this disorder at UPMC Children’s Hospital of Pittsburgh. He will also describe the elements of newborn screening (NBS) and update the audience of current research and prospects for future PDCD NBS. https://youtu.be/P3x3ug6qqa0 [View Slides](https://www.mitoaction.org/wp-content/uploads/2024/11/PDCD-MitoAction-Talk-11_01_2024-final-ver2.pdf) **Tags:** clinical trials, expert series, newborn screening, pdcd **Resource Categories:** Pyruvate Dehydrogenase Complex Deficiency (PCDC), Treatments, Understanding Mito **Resource Type:** Expert Series --- ### [Expert Series: Enhancing the Lives of Mitochondrial Disease Patients Through Compounded Treatment Options](https://www.mitoaction.org/resources/expert-series-enhancin-lives-compounded-treatment/) **Published:** June 6, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2024/06/ES-July-12-Chemistry-RX-1024x1024.png)Numerous Mitochondrial disease patients consume something known as the “Mito Cocktail”. What is this exactly? How do you decide where to get components of your “Mito Cocktail” and what are the pros and cons of using a compounding pharmacy? How do compounding pharmacies work with clinicians to make sure that patients are receiving the treatments that they need? Join MitoAction and Chemistry RX as we seek to better understand these questions and the compounding pharmacy. https://youtu.be/KA30IYG8CO4 [View Slides](https://www.mitoaction.org/wp-content/uploads/2024/07/ChemRx-Presentation-2-1.pdf) **Tags:** compounded treatment, expert series, treatment options **Resource Categories:** Treatments, Understanding Mito **Resource Type:** Expert Series --- ### [The Mito Cocktail - What you need to know!](https://www.mitoaction.org/resources/the-mito-cocktail-what-you-need-to-know/) **Published:** February 15, 2019 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") One of the front-line treatment approaches to a mitochondrial disease is to use a combination, unique to each patient based on symptoms and diagnosis, of vitamins and supplements such as Coenzyme Q10, B-vitamins, L-Carnitine, Creatine, and Alpha Lipoic Acid. Compounding pharmacists Saad Dinno and Ted Toufas from Acton Pharmacy will be discussing the ingredients which make up the mysterious “Mito Cocktail.” #### Some talking points will include: - What is a compounding pharmacist? - How do ingredients in the Mito Cocktail differ from a compounding pharmacist than an over-the-counter source? - What are the side effects of the vitamins & supplements used to support adults and children with mitochondrial disease? - Which vitamins and supplements are most commonly included in a treatment regimen? **Resource Categories:** Treatments **Resource Type:** Expert Series --- ### [Energy in Action Podcast Episode 120: Mito Mom Warrior](https://www.mitoaction.org/resources/energy-in-action-mito-mom-warrior/) **Published:** October 30, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [](https://app.castos.com/podcasts/18538) ![](https://www.mitoaction.org/wp-content/uploads/2024/10/Episode-120-sharickah-1024x1024.png)Sharickah is a mito mom and a fierce fighter and advocate for her son. **EPISODE HIGHLIGHTS** **Can you share with us what your son’s diagnosis journey has been like?** My 8-year-old son was diagnosed at 6 days old with very long-chain acyl-CoA dehydrogenase (VLCAD) deficiency. At the end of my pregnancy, my doctor noticed a depletion of fluids and I was scheduled for an emergency c-section because that could be an indication of distress. After being born, my son struggled with maintaining his body temperature and blood sugar, which were the first signs of something being not quite right. As first time parents, looking to the doctors who didn’t seem concerned, we took him home from the hospital as planned. The next day, we received a call from the genetics clinic to let us know that VLCAD was flagged on the newborn screening. We went straight to the hospital and treatment began right away. The first couple of years were tough and illness led to hospital stays numerous times. **What are your son’s limitations now that he’s older?** The main two things are the fat restriction and energy output. He’s up to 14 grams a fat, which is great, but it’s still limiting. Now that he’s older, and knows how to read food labels, he’s gotten more vocal about what he wants to eat and he’s navigating his own feelings about his limitations. Energy output is key because he wants to play sports, play at recess and be active at P.E. and sometimes he pushes a bit too hard and overdoes it. **How do you navigate school and rare disease?** My son doesn’t want his friends to know that he has VLCAD. You can’t look at him and tell that anything is wrong, so it never occurred to us to have a conversation with his peers. Of course, we had a conversation with school staff. One day when he came home from school, he was telling me that a classmate asked him why he couldn’t have chocolate milk at lunch like them and he told them he didn’t want to talk about it. I’m trying to let him lead how we navigate this. As of now, none of his friends know and it seems like he wants to keep it that way. I think when the time is right and he’s ready to share that part of himself, he will. **Tags:** energy in action, mitochondrial disease care, podcast, research **Resource Categories:** Day-to-Day with Mito, Treatments, Understanding Mito **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 119: Daily Living Aids](https://www.mitoaction.org/resources/energy-in-action-daily-living-aids/) **Published:** October 29, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [](https://app.castos.com/podcasts/18538) ![](https://www.mitoaction.org/wp-content/uploads/2024/10/Episode-119-1024x1024.png)Barbara Piascik and Jackie Bumba join us from the Cleveland Sight Center store, which serves those with low and no vision by providing more than 800 innovative daily living products. They’re here to answer all of our questions about using the products available to cope with vision loss and impairment and about the support services available through the Cleveland Sight Center. **EPISODE HIGHLIGHTS** **What is a daily living aid?** They’re products, devices and equipment that help people with disabilities or the elderly to perform everyday tasks or activities. This includes personal care and mobility devices that support daily living skills so people can live independently. **There are several mitochondrial conditions that cause vision issues. When is the best time to connect with you about daily living products?** Most vision conditions are progressive and you’re aware of your vision changes. Educating yourself about the products available is important because while you may not need something now, you may need it in the future. It’s likely easier to learn how to use a product while you still have vision, compared to when you don’t. **What type of products are most beneficial for people with low or no vision?** Some CCT / reading machines have software that can take photos and read things back to you. A relatively new product is a glasses camera that reads text. Bump dots are a simple sticker that can be stuck to household items, like washing machine buttons, to help people label, mark and identify things they commonly use. We have talking clocks, watches, keychains, scales, tire gauges and tape measures— there are so many products from no tech to high tech. Technology is constantly changing and improving and we continue to evaluate new products as we make them available through the store. **How does someone get started?** When you register as a Cleveland Sight Center client, which there’s no fee for, you’re eligible for all of our services— shopping in our store, being seen in the clinic, early intervention, children’s services, vision rehab, recreational activities and more. You’ll be assigned a caseworker who will guide you and educate you about the services that will be helpful to you. If you’re not local to one of our Ohio stores, we can start with a needs analysis over the phone and we can ship products across all 50 states. **LINKS & RESOURCES MENTIONED** [**Cleveland Sight Center**](https://www.clevelandsightcenter.org/) [**Cleveland Sight Center Store**](https://store.clevelandsightcenter.org/) [**CSC Call Center**](https://www.clevelandsightcenter.org/call-center) **Tags:** energy in action, mitochondrial disease care, podcast, research **Resource Categories:** Day-to-Day with Mito, Treatments, Understanding Mito **Resource Type:** Podcasts --- ### [MitoArtisan's Playtime - Course 2: Eye to the Soul](https://www.mitoaction.org/resources/mitoartisans-playtime-course-2-eye-to-the-soul/) **Published:** October 15, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Download the Course 2 Supply List, Description, and Outline Sketch and watch the video below.** [Course-2\_-Eye-to-the-Soul](https://www.mitoaction.org/wp-content/uploads/2024/06/Course-2_-Eye-to-the-Soul.pdf)[Download](https://www.mitoaction.org/wp-content/uploads/2024/06/Course-2_-Eye-to-the-Soul.pdf) https://www.youtube.com/watch?v=KhmNeMkS5Vg **Resource Type:** MitoArtisans Playtime --- ### [Energy in Action Podcast Episode 118: Rare Disease in the Room](https://www.mitoaction.org/resources/energy-in-action-rare-disease-in-the-room/) **Published:** October 15, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [](https://app.castos.com/podcasts/18538) ![](https://www.mitoaction.org/wp-content/uploads/2024/10/Episode-118-danielle-1024x1024.png)There are tough conversations to be had around rare disease, especially when it affects children. Danielle Eaves Hernandez is a certified child life specialist and recreational therapist. She has worked with hundreds of families to support children affected by rare disease through the language they speak best— play! She’s a knowledgeable professional and advocate and we’re lucky to have her speak with us about how to best tackle some of these difficult conversations. **EPISODE HIGHLIGHTS** **I haven’t told my kids about my disease. I’m scared to talk to my kids, but I’m also scared not to talk to them. What should I do?** It’s best to start the conversation by asking kids about how they see things from their perspective. They recognize things and understand the impacts on their lives much differently when they’re younger. As they grow older and become more socially aware, they may recognize and understand more. I encourage families to do what they’re comfortable with, but I encourage everyone to come together so no one feels isolated. When conversations with kids take place, understand that they may take the information in differently, compartmentalize it and chew on it. It’s important to keep conversations open-ended. **Is it best to protect children from the truths about a parent’s rare disease to protect their childhood and avoid worry or fear they may feel?** It’s natural to want to protect children, but when the time is right that you can disclose the truth, there will be a relief that comes. It also teaches kids that we don’t have to go through scary things alone and that as a family, you’ll face the good, bad, ugly and in-between together. **If a disease isn’t invisible and where children take notice, what is your advice for supporting the children in that scenario?** I approach it from a child-led place, asking questions that help me understand their perspective. With younger children especially, playing doctor with a puppet with any medical equipment they may see in their world helps them to engage and act out what they witness. This is an important outlet to give them control, identify worries and misconceptions and then have talks about them. **Where should a family seek out to get this type of care?** Families should look for palliative care wherever they live and that’s a great place to start. If you need to find a provider, you can visit the National Hospice and Palliative Care Organization (NHPCO) online for assistance finding resources. You can also seek out therapy through a mental health professional to check in with children, even if it’s only temporary or to help support them through a big life event. **However children are affected by rare diseases, how can we help them feel hopeful?** We talk a lot in pediatric hospice and palliative care about how the things we hope for can take shape in different forms. We hope for things, but then our hopes may change with disease progression. It’s important to honor how hope can shift and change, allowing space for hope to exist and thrive, even when we’re in a situation we hoped to never be in. **LINKS & RESOURCES MENTIONED** [**Is a Worry Worrying You?**](https://www.amazon.com/Worry-Worrying-You-Ferida-Wolff/dp/1933718056) [**Cells, Genes & Protein Machines**](https://www.amazon.com/Cells-genes-protein-machines-science/dp/B000116642) [**National Hospice and Palliative Care Organization (NHPCO)**](https://www.nhpco.org/) **Tags:** energy in action, mitochondrial disease care, podcast, research **Resource Categories:** Grief, Patient Stories **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 117: Rare Sisters](https://www.mitoaction.org/resources/energy-in-action-nutritionally-aware-copy/) **Published:** October 15, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [](https://app.castos.com/podcasts/18538) ![](https://www.mitoaction.org/wp-content/uploads/2024/10/Episode-117-erin-1024x1024.png)Rare Sisters- We welcome you to our conversation of pain, envy, supporting each other and finding joy during the more difficult times. What it takes to support a friend or relative with chronic pain. **EPISODE HIGHLIGHTS** **Can you share about your rare disease journey?** I have a connective tissue disorder called Ehlers-Danlos syndrome and a lot of other diagnoses fall under the umbrella of the disease, such as celiac disease, POTS and allergies. I had multiple mis-diagnoses from the time I was young before I was officially diagnosed with Ehlers-Danlos syndrome. When I was younger, I was always getting hurt and always in pain and I thought it was normal. I would even dislocate joints and I never said anything. I had a lot of symptoms of Ehlers-Danlos syndrome that I wasn’t aware of. **How much did your rare disease impact your decision to adopt?** My husband and I have always discussed adopting, but having chronic health issues definitely played a part in our decision. It was scary to think about passing something along to a child. So many things can happen in a pregnancy and we had to consider the additional risks associated with having multiple health concerns and the effects that medications may have, or what medications I may have to change or quit taking and how that would affect me. There are so many ways to have children if you have health concerns. **How are you balancing rare disease and motherhood?** I have been a teacher for 13 years and my most recent job was an hour from my home. I love teaching, but it got too difficult to make the commute and it was affecting my ability to do my job as well as I wanted and my personal life and the things I could do on the weekends. I was also sick constantly. I found an opportunity to teach from home and I do that full time now. I’m fortunate to have the opportunity and I’m so glad that it worked out. Right after I started my current job is when we found out our daughter was going to be placed with us with little notice, so it worked out well. It has made everything a lot more manageable. **Tags:** energy in action, mitochondrial disease care, podcast, research **Resource Categories:** Grief, Patient Stories **Resource Type:** Podcasts --- ### [MitoArtisan's Playtime - Course 1: Snowdrop and Ladybird](https://www.mitoaction.org/resources/mitoartisans-playtime-course-1-snowdrop-and-ladybird/) **Published:** April 14, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Download the Course 1 Supply List, Description, and Outline Sketch and watch the video below.** [Course\_ Snowdrop & Ladybird (1)](https://www.mitoaction.org/wp-content/uploads/2024/04/Course_-Snowdrop-Ladybird-1.pdf)[Download](https://www.mitoaction.org/wp-content/uploads/2024/04/Course_-Snowdrop-Ladybird-1.pdf) https://youtu.be/_9mqKMiWCdM **Resource Type:** MitoArtisans Playtime --- ### [Expert Series: Mitochondrial Disease and PMM](https://www.mitoaction.org/resources/expert-series-pmm/) **Published:** September 11, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2024/09/ES-Sept-13-Amel-Karaa-1024x1024.png)What is Primary Mitochondrial Myopathy (PMM)? Join MitoAction and Amel Karaa as she discusses the terminology used to describe mitochondrial diseases and what constitutes “primary mitochondrial myopathy”. We will review why we use the term PMM and why we need to classify patients with mitochondrial disease within different groups. https://www.youtube.com/watch?v=Y7rb-_oFoWQ [View Slides](https://www.mitoaction.org/wp-content/uploads/2024/10/Mitochondrial-Disease-and-PMM-MitoAction-2024.pdf) **Tags:** compassionate use, expanded access, experimental therapies, expert series **Resource Categories:** Treatments, Understanding Mito **Resource Type:** Expert Series --- ### [Expert Series: Managing the Highs and Lows of Mitochondrial Disease: a review and updates on diabetes and hypoglycemia](https://www.mitoaction.org/resources/expert-series-diabetes-and-hypoglycemia/) **Published:** September 11, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2024/09/ES-October-4-1024x1024.png)Join Dr. McCormack and Dr. Guzman as they review and discuss the causes of high and low blood sugars in mitochondrial disease, while also providing important updates on mitochondrial diabetes and hypoglycemia management. https://youtu.be/H5em8l1fFZI [View Slides](https://www.mitoaction.org/wp-content/uploads/2024/10/MitoAction-pres-2024_Dysglycemia.pdf) **Tags:** diabetes, expert series, hypoglycemia **Resource Categories:** Treatments, Understanding Mito **Resource Type:** Expert Series --- ### [Blood Tests for Mitochondrial Disease Diagnosis](https://www.mitoaction.org/resources/blood-tests-for-mitochondrial-disease-diagnosis/) **Published:** September 16, 2010 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") As a follow-up discussion to Dr. Fran Kendall’s presentation on “Muscle Biopsy Testing for Mitochondrial Disease”, MitoAction welcomes Dr. Steve Sommer of MEDomics to discuss testing for mitochondrial disease using a blood sample. #### About MEDomics After 23 years in academia, Dr. Steve Sommer started MEDomics in order to apply a revolutionary technology called “NextGen sequencing” to clinical mitochondrial medicine. MEDomics sequences the entire mitochondrial DNA genome thousands of times. That sometimes allows the diagnosis of mitochondrial disease to be made with a blood sample rather than with painful muscle biopsies. MitoDx is a test of unprecedented power for diagnosing mitochondrial genome disease, which is roughly “half the elephant” of mitochondrial disease. **Resource Categories:** Diagnosis **Resource Type:** Expert Series --- ### [Current Topics in IV Therapy for Hydration and Nutrition](https://www.mitoaction.org/resources/iv-hydration-and-nutrition-current-topics-with-thrive-rx/) **Published:** October 7, 2011 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Mona Inocentes and Deb Pfister from Thrive RX discuss the latest topics in IV therapies, including answers to common questions such as: - My doctor ordered home health services for IV infusions for fluids, but since I only have it every few weeks my insurance won’t pay and it’s very cumbersome. Help?! - My child is constantly getting infections and then ends up in the hospital – I think it’s from poor line care. What can I do to help reduce the risk of infections from the catheter site? - Are people with Mito successfully using IV therapy for fluids and nutrition support outside of the hospital? What do I need to know and what should I tell my doctor? **Resource Categories:** Nutrition **Resource Type:** Expert Series --- ### [Expert Series: Expanded Access and Compassionate Use of Experimental Therapies](https://www.mitoaction.org/resources/expert-series-expanded-access/) **Published:** August 12, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2024/08/ES-Aug-23-Koenig-1024x1024.png) “Expanded Access” and “Compassionate Use” are terms that are utilized in our rare disease community, but what do they mean? How do patients learn about, get involved, better understand the qualifications, and talk with their doctor about participation in either of these programs? Join MitoAction and Dr. Koenig as we dive deep into better understanding the differences and overlap between “Expanded Access” and “Compassionate Use” therapies. https://youtu.be/u5lGCfsUNII **Tags:** compassionate use, expanded access, experimental therapies, expert series **Resource Categories:** Treatments, Understanding Mito **Resource Type:** Expert Series --- ### [Energy in Action Podcast Episode 116: Nutritionally Aware- Boosting Energy with the Foods You Eat](https://www.mitoaction.org/resources/energy-in-action-nutritionally-aware/) **Published:** August 21, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [](https://app.castos.com/podcasts/18538) ![](https://www.mitoaction.org/wp-content/uploads/2024/08/Episode-116-1024x1024.png)Claire Held is a personal nutrition coach and she joins me to talk about healthy eating to create energy and the foods that are helpful for mitochondrial care. If you have low energy, low muscle tone and fatigue, Claire will share resources and advice for how to improve these challenges. **EPISODE HIGHLIGHTS** **What is your health and professional background?** I was born prematurely and in and out of a children’s hospital many times with heart failure and kidney failure. Eventually I was diagnosed with LCHADD. In 2009 I went to college, studying metabolics because it’s such a young area of research and it’s a really important part of healthcare. I graduated with my degree in nutrition and dietetics in 2014. **How can what I choose to put in my body have a positive affect on health issues?** A lot of people with mitochondrial disease suffer from fatigue and low muscle tone, so it’s important to be aware of how you eat and to do moderate, low impact exercise. The more tired we are, the less we want to move, but doing this type of exercise will get the health rate up and help strengthen the muscles. We want to be mindful of how much of our diet is coming from simple carbohydrates or ultra-processed foods. These types of food will give you a quick glucose boost which is important to feel energized, but the crash is worse. For muscle pain, rest is important, but an increased protein intake can also help. **What factors most impact our overall feeling of exhaustion and fatigue?** There are 5 main categories: 1. External Environments (job, school, projects, political climate), 2. Internal Environments (home life, finances, relationships), 3. Biological Stressors (overdoing exercise, fighting off disease, infection or illness), 4.Weather (extreme heat, extreme cold, elevation, climate), 5. Diet and Nutrition (deficiencies, interventions). **What time-saving hacks do you have for those who don’t have the energy to meal prep in advance?** The prepared food is going to be highly processed, have excess fat and additives to preserve it. It’s tricky to not reach for prepared foods, but there are ways to ensure you’re preparing a meal that’s healthy and quick. Plan for go-to meals that don’t require you to think about the ingredients and preparation. Even if you can’t meal prep in advance, try to cut up vegetables or do other prep that will save you time later when you’re tired. **LINKS & RESOURCES MENTIONED** [**In Good Company Blog**](https://www.i-g-c.com/blog) **Tags:** energy in action, mitochondrial disease care, podcast, research **Resource Categories:** Grief, Patient Stories **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 115: Being A Mother and Physician and Struggling with Mito](https://www.mitoaction.org/resources/energy-in-action-legacy-of-liel-copy/) **Published:** August 21, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [](https://app.castos.com/podcasts/18538) ![](https://www.mitoaction.org/wp-content/uploads/2024/08/Episode-115-1024x1024.png)Rachel balances caring for herself as a mito patient, but also her two children and for the greater community through the work she does. **EPISODE HIGHLIGHTS** **What has your diagnostic journey been like?** I was born with mito and my symptoms have remained the same, but I wasn’t diagnosed until I was 17 years old. I was diagnosed in 1998 through muscle biopsy with unspecified mitochondrial myopathy and was told that my diagnosis included chronic progressive external ophthalmoplegia (CPEO), the limitation of eye movement and the weakness of the muscles around the eyes. My diagnosis seems to affect my skeletal muscles, but not other organs or smooth muscles. **How is life as a mom and what are your struggles?** Like any other parent, challenges shift as kids grow and change. Early on, I had fears that I couldn’t be an adequate mom. I came into motherhood as I came into my career, later than most people because of the fear I had in my ability to do it. As my kids grew, I couldn’t lift them and there have been other limitations along the way, depending on the day. Sometimes I still feel the reality of those limitations when they want to be lifted up into a swing or something on the playground. Bathing them is really physical, as is going up and down the stairs carrying things. My strengths come in emotionally when I talk to and play quietly with my kids. In most moments, I feel like a good mom and I’m showing my kids that not everyone has the same capacity. **What do your kids know about your rare disease?** My oldest is 6 years old, so they haven’t asked and I haven’t explained anything to them directly. I only very recently tried to open a conversation about it with my oldest, but she has really only taken notice that I’m not as strong as her dad. My plan when the time is right is to be fully forthcoming and tell them as much as I know. **What inspired your career as a physician and the work you do today?** My dad is a doctor and I’ve always had similar interests as him. I’ve remained curious about the science of medicine, but it wasn’t easy for me to decide to go to medical school. I moved from primary care to disease investigation, which is a desk job that’s better suited to my needs and strengths. I got a lot from my relationships with patients, but I feel fulfilled in the work I’m doing now and I feel a lot of satisfaction and my work is really interesting to me. **Tags:** energy in action, mitochondrial disease care, podcast, research **Resource Categories:** Grief, Patient Stories **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 111: Chemistry Rx](https://www.mitoaction.org/resources/energy-in-action-chemistry-rx/) **Published:** June 4, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [](https://app.castos.com/podcasts/18538) ![](https://www.mitoaction.org/wp-content/uploads/2024/06/Episode-111-Chemistry-Rx-1024x1024.png)Jonathan Mordis, Houry Lepedjian and Jennifer Kmetich join me from Chemistry Rx. As experts in the preparation of customized medications for patients with rare disorders, they have expertise in compounding formulations for Mitochondrial Disease and they join me for a discussion about everything compounding. **EPISODE HIGHLIGHTS** **What is a compounding pharmacy?** When you utilize a retail pharmacy, you have access to commercially available medications with standardized dosages that cater to most patients. A compounding pharmacy has the opportunity to create unique doses and dosage forms for different patients where a one-size-fits-most approach doesn’t work for treatment. As a compounding pharmacy, we have access to the active ingredients in medications and put them into differing doses and forms for a range of patients and diseases. **Why would a mito patient use a compounding pharmacy?** When it comes to mito cocktails, everyone’s body is different, and as it relates to mitochondrial disease and metabolic conditions, being able to individualize treatments is key to treating these conditions. It’s crucial to customize mito cocktails to each patient’s clinical genotype and phenotype- the way their genes present in genetic testing, physically and clinically. Different mutations require unique combinations and amounts of the ingredients that go into a mito cocktails and they all work together to compensate for a lack of specific metabolites, which is generally in a higher dose than what’s available over the counter. **How does a patient get started if they want to utilize compounding services through Chemistry Rx?** The prescriber will send the prescription to us and a nurse from our clinical team will reach out to the patient to let them know we received it and we’re working on the authorization process. They’ll gather information about insurance, medications, dietary restrictions, and any personal preferences we should take into consideration. Throughout the process, we welcome patients to reach out about any part of the process, including insurance authorizations and claim appeals. Once a mito cocktail has been customized for a patient, it will be shipped overnight on ice as frequently as needed, before the last dose is complete. **LINKS & RESOURCES MENTIONED** [**Chemistry Rx**](https://www.chemistryrx.com/) **CONNECT WITH MITOACTION** Website Facebook Twitter Instagram LinkedIn **Tags:** compounding, energy in action, podcast **Resource Categories:** Day-to-Day with Mito, Treatments, Understanding Mito **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 108: At College with Mitochondrial Disease](https://www.mitoaction.org/resources/energy-in-action-at-college-with-mito/) **Published:** April 17, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [](https://app.castos.com/podcasts/18538) ![](https://www.mitoaction.org/wp-content/uploads/2024/04/Episode-108-College-1024x1024.png)College can be a challenging and overwhelming experience for any student, but the complexities of mito disease makes college even more challenging. Natalie, Alex and Annie are all college students and they join me, along with the Mito Action CEO, Kira Mann, to talk about their experience and how Mito Action can be helpful to students who have college in their future. **EPISODE HIGHLIGHTS** **What do you wish you had known in your first year of college that can help students have a successful experience?** Plan, but also know that plans may change, and that’s okay because it’s part of the learning experience. Disability advocates are a great resource, but you can also advocate for yourself, if you need to attend classes virtually sometimes as an example. Create a margin to balance the new responsibilities and life skills so you can manage your mito and energy. There are resources on college campuses, so get to know yours and continue to advocate for yourself while you adjust to your new routine and experience. Advocacy is the number one thing that will support you through college and beyond, and it’s an important skill to have and utilize. **What is your advice for someone entering college?** Craft your college schedule in a way that works best for you, taking into account when your energy is typically highest, building in breaks, and allowing for extra time to travel around campus. As classes become more specialized and more difficult to schedule around what’s best for you, prepare yourself the best you can by getting enough sleep and taking care of yourself. **What scholarships, support and services can Mito Action provide to college students?** The Matthew Harty Camper scholarship program was established in 2015. The Matthew Harty Camper Fund was established in honor of Matthew Harty, who had mitochondrial disease, and his biggest dream was to go to summer camp, which he had to be eight years old to attend. Matthew passed away just a few days after his eighth birthday and was never able to go to camp so the program honors him and helps other mito kids fulfill their dreams. To date, we’ve granted over $200,000 in scholarships to kids looking to pursue higher education. Applications are open through May 2024. We have been building a list of resources so we can support and guide students and parents through connecting you with other families, resource sharing, and support calls. **LINKS & RESOURCES MENTIONED** [**State Vocational Rehabilitation Agencies**](https://rsa.ed.gov/about/states) [**Matthew Harty Camper Fund Scholarship Application**](https://www.mitoaction.org/programs-support/mitoaction-programs/mhcf/scholarship) **CONNECT WITH MITOACTION** Website Facebook Twitter Instagram LinkedIn **Tags:** college, education, energy in action, MIDD, podcast **Resource Categories:** Day-to-Day with Mito, School Advocacy, School Planning **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 112: Cegat Genetic Opportunities](https://www.mitoaction.org/resources/energy-in-action-cegat-genetic-opportunities/) **Published:** June 19, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [](https://app.castos.com/podcasts/18538) ![](https://www.mitoaction.org/wp-content/uploads/2024/06/Episode-112-Cegat-1024x1024.png)Eric Miller and Anil Bhardwaj join me from CeGaT, a biotechnology company and world-leader in genetic analyses for a wide range of medical, research and pharmaceutical applications. They offer a lot of resources and ways to improve patient lives in the mito community and they’ll highlight those opportunities for us in this episode. **EPISODE HIGHLIGHTS** **What is next generation sequencing?** In terms of analyzing DNA, the process has undergone shifts and is now massive parallel sequencing of the DNA. Various structures of DNA are amplified up to analyze them and make a diagnosis or look at it scientifically and perform research. For someone in genetics, next generation sequencing (NGS) allows stretches of DNA to be massively parallel amplified and see errors that may be causing a disease. **Is there a benefit for patients with a genetic diagnosis to do additional testing?** If you’ve had genetic testing, it can be beneficial to make sure the lab is re-testing in case of new markers that could be identified as causative, it would be helpful to know. **Can patients contact you directly for testing or should they go through their physician?** They can contact us directly and we will direct them through the system to access testing. If you’re requesting diagnostic testing, it has to be made by a physician, but we’re happy to connect patients to our own in-house physicians to access testing. We will also work directly with a patient’s physician and help with access to resources, education and genetic counseling. **What does the testing process look like?** We have a collection kit we make available to collect DNA by blood draw. Once the sample has been received, it will be tested and a report will be generated within a few weeks and returned to the physician. **How do you help patients with family planning?** The family planning panel analyzes all recessive mutations so they can understand any risk of passing on genetic mutations to offspring. This helps to uncover the probabilities of passing on a genetic disease and minimizing risk. **LINKS & RESOURCES MENTIONED** [**How ExomeXtra® Solves Patient Cases: A Four-Year Retrospective**](https://cegat.com/about-us/webinars/) [**CeGaT**](https://cegat.com/) **CONNECT WITH MITOACTION** Website Facebook Twitter Instagram LinkedIn **Tags:** DNA, DNA Analyzing, energy in action, Genetics, podcast, testing **Resource Categories:** Genetic Counselors, Genetic Testing, Understanding Mito **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 114: The Life and Legacy of Liel](https://www.mitoaction.org/resources/energy-in-action-legacy-of-liel/) **Published:** July 17, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [](https://app.castos.com/podcasts/18538) ![](https://www.mitoaction.org/wp-content/uploads/2024/07/Episode-114-Tamar-1024x1024.png)Tamar Fenton joins me to share the story of her daughter, Liel. Mitochondrial disease has ravaged her family and while her story may be tough to hear, it’s important because the work Tamar has done since Liel’s death is incredible and impactful. **EPISODE HIGHLIGHTS** **Who was Liel?** Liel’s life was short, but she accomplished so much and touched so many people in 21 years. She was tiny, only 4’11.5″, but mighty. Her hair was beautiful, curly and an unreal color of strawberry blond. She was spunky, tenacious, super opinionated and strong-willed, funny and wise beyond her years. Before she got sick, she was always in motion. She did kickboxing, wrote a book to demystify mental health for children, she did slam poetry competitions, she learned ASL to become a big sister to a deaf child and she once even went undercover for a tobacco program to help prevent the underage sale of tobacco products. She had a large TikTok following and she connected with the younger population, helping them through difficult times and sharing support resources with them. **What was Liel’s diagnostic journey like?** At the age of 3, she was getting strep and ear infections that wouldn’t clear up and she was diagnosed with immune disorders. As time went on and she grew, she developed other symptoms like gastrointestinal issues, hair loss, gynecological issues, mental health issues and metabolic issues and she received several additional diagnoses. I couldn’t help but think that all of the symptoms were on the same trajectory of things happening in her body that suggested her cellular communication wasn’t working. Unfortunately, we didn’t initially have the support of specialists interested in digging deeper and they suggested that everything pointed to psychological issues. For 18 months, no one would consider any other diagnosis, Liel was treated horribly, and I was accused of having Munchausen by Proxy. The journey was heartbreaking and it broke us. It was only when we went to a private clinic and paid out of pocket, did we get the chance at cellular testing. Testing revealed Liel’s mitochondria had no energy. We then did genetic testing and Liel didn’t match any known mitochondrial disease. Because she didn’t appear to have a genetic disorder, we couldn’t be seen at the mitochondrial clinic and we were left with nowhere to turn. Liel went on hospice for the last 7 months of her life and we tried to make the most of time the best we could. **Since Liel has passed, what have you been working at?** It was important to Liel that no one else had to suffer the way she did. I promised her that I would tell the whole story. I started writing to all of her doctors and medical institutions to tell them what really happened that wasn’t in their records— what happened, how we were treated, tests they didn’t order and how Liel died. In some cases, I got a short note back to tell me they were sorry for my loss, they didn’t do anything wrong and they wouldn’t be meeting with me. I sought out a partnership to help me get Liel’s story out and make a change. I found The Patient Revolution, which is an organization that’s working to change the industrialized medical system to be kind, and careful and provide the time necessary to diagnose and treat patients with empathy. When I told them about Liel, they agreed to help me. I have also recorded videos for a course called *Foundations of Care* for The Patient Revolution which is offered to doctors and medical providers to learn how to advocate and change the medical system they work in. I’m also speaking at conferences to help spread awareness about the connection between antibiotics and mitochondrial damage. **LINKS & RESOURCES MENTIONED** [**The Times of Israel: Liel and Dora**](https://blogs.timesofisrael.com/liel-and-dora/) [**PBS News: The Patient Revolution aims to expose healthcare flaws and pave the way for improvement**](https://www.pbs.org/newshour/show/the-patient-revolution-aims-to-expose-healthcare-flaws-and-pave-the-way-for-improvement) [**Tamar Speaking at MAPS 11-30-23**](https://vimeo.com/user203746231) [**The Patient Revolution**](https://www.patientrevolution.org/) [**Foundations of Care Course**](https://www.patientrevolution.org/school) **CONNECT WITH MITOACTION** Website Facebook Twitter Instagram LinkedIn **Tags:** energy in action, mitochondrial disease care, podcast, research **Resource Categories:** Grief, Patient Stories **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 113: Dr. Vockley's Journey in Mitochondrial Disease Care](https://www.mitoaction.org/resources/energy-in-action-dr-vockley/) **Published:** July 3, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [](https://app.castos.com/podcasts/18538) ![](https://www.mitoaction.org/wp-content/uploads/2024/07/Episode-113-Vockley-1024x1024.png)Dr. Jerry Vockley works everyday in the development and advancement of mitochondrial disease patient care. He is a Cleveland Family Endowed Chair in Pediatric Research, Professor of Pediatrics and Human Genetics, and Director of the Center for Rare Disease Therapy. **EPISODE HIGHLIGHTS** **What inspired your career in genetics and mitochondrial care?** I stumbled into genetics as an undergraduate and did undergrad research in genetics. My first job was also in genetics. I can’t tell you precisely what triggered my interest in genetics, but it layered on and I can’t imagine a different career. **What is your research focus and goals for that research?** In clinical and medical genetics when I started in the field, there weren’t the diagnostic advances we have now. The biggest advances came with the development of diagnostic technology. My focus is now on additional improvement and changes in technologies that have allowed us to move forward in therapy. Almost everything I do is therapy-based. The area I’m excited about is that we’re in the process of developing our first gene therapy for a fatty acid oxidation defect and we expect it’ll be in clinical trials in a couple years. Fatty oxidation disorders didn’t exist when I started my career because we didn’t know about them. To go from not knowing about them to being able to cure them is powerful. **When you go into the lab and create experiments and conduct research, is it inspired by the patients you see?** As an example of why we would do something like that, I once saw a 12-year-old girl who had whole-body psoriasis and physicians had only ever treated the psoriasis. I recognized that in addition to the rash, she was small for her age, had a small head size and she hadn’t started showing any signs of sexual maturity. I suspected her case was more than just a rash and sent samples off to look for defects in steroid metabolism. Testing came back normal and so we went into the lab to look more broadly and identified a chemical that should have been there. We were able to confirm a gene that wasn’t working and that led to us determining what the girl had and we were able to establish an effective treatment. **LINKS & RESOURCES MENTIONED** [**International Network for Fatty Acid Oxidation Research and Management (INFORM)** ](https://informnetwork.org/) **CONNECT WITH MITOACTION** Website Facebook Twitter Instagram LinkedIn **Tags:** energy in action, mitochondrial disease care, podcast, research **Resource Categories:** Research, Understanding Mito **Resource Type:** Podcasts --- ### [DTC Testing - Power & Pitfalls](https://www.mitoaction.org/resources/dtc-testing-power-pitfalls/) **Published:** April 5, 2019 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction and Dr. Fran Kendall to discuss Direct to Consumer genetic testing (DTC testing) in detail. Some talking points will include: - Strengths and limitations of DTC testing. - Studies and data surrounding follow-up confirmatory genetic testing completed in patients with varients identified in DTC testing. https://youtu.be/0h3kLpsd_5s **Resource Categories:** Diagnosis **Resource Type:** Expert Series --- ### [Energy in Action Podcast Episode 110: MitoArtisans](https://www.mitoaction.org/resources/energy-in-action-mitoartisans/) **Published:** May 15, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [](https://app.castos.com/podcasts/18538) ![](https://www.mitoaction.org/wp-content/uploads/2024/05/Episode-110-MitoArtisans-1024x1024.png)Welcome back to our fellow mito warrior, Christine Knox, who’s here to talk about a new program she’s implementing for MitoAction. **EPISODE HIGHLIGHTS** **Can you tell us about the program you’ve started and what inspired it?** I’ve noticed a lot of programs offered to the mito community are fundraising efforts geared towards people who are sports minded. That’s not in my realm of interest, so I decided to offer something artistic because I’ve been a lifelong artist. I proposed the program to MitoAction and we started MitoArtisan’s Playtime. The intention is to have monthly Zoom sessions where an artist will share their work and teach or demonstrate a technique, sharing the dialogue of the artistic journey we all go on through mito. My artwork is my healing place where I can go to escape pain, worries and stress and I think it’s important to support other mito artists in their journey as well. **What has your career in art been like?** I started drawing at about 10 years old and prior to that was a kid who loved coloring in coloring books. That’s where my love of using colored pencils began. Throughout the years, I turned to my artwork as time and energy allowed and I enjoyed exploring new mediums. About six years ago, I started taking commissions, which mostly feature animals. **Can someone who doesn’t consider themselves an artist get involved with MitoArtisan’s?** Definitely, and all ages are welcome! We walk everyone through step-by-step and there will be recordings available. There will be a list of supplies available in advance of sessions, but it’s just playing, so you can use whatever materials and supplies you have available. **When will the next session be?** The next session will be in June and we will be drawing a close-up of the human eye. Sessions are about two hours, but the recording will be available to replay if you can’t stay for the whole session. **LINKS & RESOURCES MENTIONED** [**MitoArtisan’s Playtime**](https://www.mitoaction.org/programs-support/mitoaction-programs/mitoartisans-playtime/) **CONNECT WITH MITOACTION** Website Facebook Twitter Instagram LinkedIn **Tags:** art, energy in action, podcast **Resource Categories:** Day-to-Day with Mito, School Advocacy, School Planning **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 109: Breath Taking](https://www.mitoaction.org/resources/energy-in-action-at-breath-taking/) **Published:** May 2, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [](https://app.castos.com/podcasts/18538) ![](https://www.mitoaction.org/wp-content/uploads/2024/05/Episode-109-Breath-Taking-1024x1024.jpg)Jessica Fein is the author of Breath Taking: A Memoir of Family, Dreams, and Broken Genes. She’s also an essayist, and advocate, a speaker and the host of the I Don’t Know How You Do It podcast, which features guests who triumph over seemingly impossible challenges. Jessica is a working mom of three children and she’s a relentless warrior in the memory of her dynamic daughter who she lost to an ultra rare mitochondrial disease, Myoclonic epilepsy with ragged red fibers (MERRF). Her work encompasses hope and humor, gift and grace, the tools that make up her personal survival kit. **EPISODE HIGHLIGHTS** **What inspired you to write your book?** The first thing I wrote was about my daughter Dalia’s diagnosis. I wrote a piece on my computer and I sent it to Huffington Post where it was published as an article and featured on the front page. I loved sharing in that way because so many people could relate. When we were in the hospital, I had a lot of time to write about the experience and one day I started writing more with the intention of publishing a memoir. **How did Dalia’s passing affect your other two children and how has being a mother changed for you?** Losing Dalia shifted every single thing in our lives. It was so intense while we were going through it that we didn’t realize how our lives were defined by what we were living through, logistically, physically, emotionally and spiritually. Our other children grew up in this intensity. They handled it, reacted to it and dealt with it in different ways from each other and in ways that continue to evolve. My youngest rarely wants to talk about it and our oldest has become an EMT which is in direct response to growing up in and sharing the responsibility of medical care. My children are who they are because of Dalia and my husband and I are also different in so many ways because of Dalia. My children are both so open, compassionate, empathetic and courageous and I know that growing up as Dalia’s siblings contributes to those traits. **How are you involved with MitoAction?** I’m proud to be part of MitoAction and the incredibly important impact the organization has. I feel like I was lucky to find MitoAction early in our diagnosis journey. One of the biggest gifts we’ve received was that since Dalia’s passing, the wish trip program was re-named to Dalia’s Wish. It’s a tremendous program that gives children and families the opportunity to spend a week at Give Kids The World Village and it’s the trip of a lifetime. **LINKS & RESOURCES MENTIONED** [**Breath Taking: A Memoir of Family, Dreams, and Broken Genes**](https://www.jessicafeinstories.com/book) [**I Don’t Know How You Do It Podcast**](https://www.jessicafeinstories.com/podcast) [**Courageous Parents Network**](https://courageousparentsnetwork.org/) [**May 14th Book Talk with Jessica Fein**](https://courageousparentsnetwork.org/events/book-talk-with-jessica-fein-breath-taking-rare-girl-in-a-world-of-love-and-loss) [**Give Kids The World**](https://www.gktw.org/) [**Dalia’s Wish**](https://give.mitoaction.org/campaign/dalias-wish/c186295) **CONNECT WITH MITOACTION** Website Facebook Twitter Instagram LinkedIn **Tags:** college, education, energy in action, MIDD, podcast **Resource Categories:** Day-to-Day with Mito, School Advocacy, School Planning **Resource Type:** Podcasts --- ### [Expert Series: The Cell Danger Response, Healing, and Mitochondrial Disease](https://www.mitoaction.org/resources/expert-series-cell-danger-response-healing/) **Published:** March 8, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2024/03/April-Robert-Naviaux-1024x1024.png)When genetic or environmental conditions threaten normal cell functions, an ancient cellular response is activated that first triggers inflammation, then initiates the cellular defenses and steps needed to repair any injury. This response starts with mitochondria and the cell and is called the cell danger response (CDR). All stressed cells release extracellular ATP (eATP) in proportion to the degree of stress, then return to baseline once that stress is resolved. New research has shown that *acquired hypersensitivity to eATP signaling* (purinergic signaling) can cause many secondary symptoms of mitochondrial disease. New medicines are in development that target ATP-related signaling, improve mitochondrial fatty acid oxidation (FAO), and decrease fatigue, pain, and the risk of depression. Improvements in neurodevelopment, several secondary symptoms of mitochondrial disease, and the core symptoms of complex medical disorders like autism have been found in recent clinical trials. https://www.youtube.com/watch?v=ZYy0GeSkxKo **Tags:** expert series, healing **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD), Research, Treatments, Understanding Mito **Resource Type:** Expert Series --- ### [Energy in Action Podcast Episode 107: Mo's Personal Journey](https://www.mitoaction.org/resources/energy-in-action-mos-personal-journey/) **Published:** April 15, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [](https://app.castos.com/podcasts/18538) ![](https://www.mitoaction.org/wp-content/uploads/2024/04/Episode-107-mo-1024x1024.png)Mo has Maternally Inherited Diabetes and Deafness (MIDD), caused by a mutation in his mitochondrial DNA. Mo is married, in his 30’s with two children and he joins me to tell his story and to share his diagnostic journey. **EPISODE HIGHLIGHTS** **Where did your diagnostic journey begin?** I first noticed that I was struggling to hear about the age of 26, and had the standard hearing test done, which revealed significant hearing loss in a high-frequency range. I got hearing aids to help improve my hearing ability. About six months later, I learned my sugar was high at a routine physical and I was prescribed medication for pre-diabetes. I met with a geneticist and an endocrinologist and was later diagnosed with mito 11 years later, which explained the existence of two separate health issues. **How do you deal with hearing loss in your day-to-day?** As advanced as hearing aids are, hearing is always on my mind, from worrying about my batteries lasting to hearing in certain instances. When my wife isn’t home, I worry about not hearing my children in another room, especially overnight when I’m not able to hear without my hearing aids. **How transparent are you with your children about your diagnosis?** My daughters are 5 and 7 and they know I have challenges, but they’re too young to understand all the specifics. I use a CGM, which is a monitor in my arm, and we call it a sugar button. They know that when my sugar is low, my sugar button will beep, and they like to let me know when it sounds. They also know I have a gross medicine, my mito cocktail. And they know about my hearing aids and that if I don’t have my ears in, they have to be really loud and talk right into my ear. **Are there additional MIDD symptoms that you don’t experience?** It’s been a challenge to find other people like me. I have connected with people through MitoAction, but I’m the only one with my condition. I haven’t had a drastic progression over the years, so it’s hard to say what will change in the future. **CONNECT WITH MITOACTION** Website Facebook Twitter Instagram LinkedIn **Tags:** diagnosis, energy in action, MIDD, podcast **Resource Categories:** Care Management, Day-to-Day with Mito, Treatments **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 106: Angel Flight New England](https://www.mitoaction.org/resources/energy-in-action-angel-flight-new-england/) **Published:** March 27, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [](https://app.castos.com/podcasts/18538) ![](https://www.mitoaction.org/wp-content/uploads/2024/03/Episode-106-Angel-Flight-NE-1024x1024.png)Kirk Walters and Larry Camerlin of Angel Flight New England are here to share about the organization, how they can assist patients who need to travel for medical care and the other resources they assist with. **EPISODE HIGHLIGHTS** **What is Angel Flight New England’s mission?** We are a nonprofit organization with a mission of flying people, free of charge, for medical care. We carry out our mission with the help of 450 volunteer pilots, our commercial airline partners— Jet Blue and Cape Air, dedicated staff and generous donors. Through the support we receive, we ensure no one is deprived of life-saving medical care. We want to be part of the treatment team, bringing people hope, letting them know they’re cared for and embraced whether they take one flight or one thousand flights with us. **What if someone is located outside of New England?** We have pilot organizations throughout the United States, so if we can’t arrange a flight, we connect with our partners and turn to our other resources. Through a pharmaceutical partner in the rare disease community, we have been able to provide international service. **What resources do people have when they arrive at their destination?** We rely on Earth Angels— our ground crew. Where we already have volunteers available, we arrange for them to meet patients at the airport and drive them to the medical facility. If we don’t have a local volunteer available, we will assist them with lining up ground transportation. They can connect with our mission flight coordinators 24 hours a day. **LINKS & RESOURCES MENTIONED** [**Call Angel Flight New England**](https://www.angelflightne.org/contact-us/) 800-549-9980 [**Angel Flight New England Website**](https://www.angelflightne.org/) [**Volunteer for Angel Flight New England**](https://www.angelflightne.org/Volunteer-Opportunities/) [**Make a donation to Angel Flight New England**](https://www.angelflightne.org/give-free-medical-transport/) **CONNECT WITH MITOACTION** Website Facebook Twitter Instagram LinkedIn **Tags:** angel flight, energy in action, podcast, travel **Resource Categories:** Care Management, Day-to-Day with Mito, Treatments **Resource Type:** Podcasts --- ### [Expert Series: Rhabdo Roundtable for Teens & Young Adults with an FAOD](https://www.mitoaction.org/resources/expert-series-rhabdo-roundtable-for-teens-young-adults-with-an-faod/) **Published:** August 1, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Rhabdomyolysis can feel like being lost without a road map leading you home. Join us for an informal session to discuss personal experiences with rhabdo, from symptoms to recovery. Physical Therapist Pamela Tucker will present a draft protocol for rehabilitation post rhabdomyolysis with the aim of demystifying recovery and physical activity. She is currently in the process of creating a protocol for the FAOD community and would love your input! ![](https://www.mitoaction.org/wp-content/uploads/2023/07/August20620Pamela20Tucker.png)[Register](https://mitoaction-org.zoom.us/meeting/register/tZUld-uopjwuHtc85b_wAXDnMv5HeiwRqUmQ) **Tags:** expert series, faod, rhabo, rhobdomyolosis **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD), rhabdomyolysis, Symptoms, Treatments --- ### [Expert Series: Modeling mitochondrial diseases with patient-derived stem cells and brain organoids](https://www.mitoaction.org/resources/expert-series-leigh-syndrome-copy-copy/) **Published:** February 23, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2024/02/March-1st-Alessandro-Prigione-1024x1024.png)In this talk, Dr. Alessandro Prigione will discuss how stem cells are generated from patients to derive models of the brain (such as neurons and brain organoids). He will further discuss how they use these models to investigate the mechanisms causing mitochondrial diseases and to set up pipelines to screen for drugs to be repositioned for patients with mitochondrial diseases. A specific focus will be on Leigh syndrome. https://youtu.be/nzhNwmO6Ze0 **Tags:** beginners, expert series, faod, metabolism **Resource Categories:** Leighs Syndrome, Research, Understanding Mito **Resource Type:** Expert Series --- ### [Energy in Action Podcast Episode 105: Medical Marijuana for Mitochondrial Disease](https://www.mitoaction.org/resources/energy-in-action-medical-marijuana/) **Published:** March 6, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [](https://app.castos.com/podcasts/18538) ![](https://www.mitoaction.org/wp-content/uploads/2024/03/Episode-105-Dr-Kendall-1024x1024.png)Dr. Fran Kendall is a Clinical Biochemical Geneticist and Founder of VMP Genetics. She is also an Adjunct Assistant Professor at the University of Georgia and authored the book *Shades of Grief: Echoes of Hope from the Darkness*. Dr. Kendall shares her insight and knowledge on the topic of medical marijuana and how it can be used to aid in medical issues. **EPISODE HIGHLIGHTS** **What is the history of using medical marijuana?** Marijuana was brought to North America in the early 1600’s. Marijuana was known for its medicinal value until 1952 when the government became criminalizing the use of marijuana, resulting in a negative perception of marijuana. In 1996 California legalized the use of medical marijuana and in 2012 Colorado legalized the use of medical and recreational marijuana. More and more states have moved towards legalizing marijuana use, but it remains banned in Wyoming, Kansas, Idaho and South Carolina. The biggest problem we face is, because of criminalization in the past, cannabis is still listed as a schedule 1 substance— a chemical or drug that has no medicinal value, is highly addictive and linked to abuse. **What health benefits does marijuana have for mitochondrial disease patients?** Marijuana was first used in the mitochondrial disease community for treating seizures, often having improved control or complete stabilization, allowing patients to reduce anticonvulsant medications, which have a lot of negative side effects. We’ve seen a reduction of anxiety and depression, improved focus and concentration, and better pain management. **How do you choose what product to use?** In some states, there aren’t product options, but other states, like California or Colorado have a lot of options. You will need to educate yourself about different products. You may have to do some level of trial and error to find what works best for you. **LINKS & RESOURCES MENTIONED** [**Shades of Grief: Echoes of Hope from the Darkness**](https://rosedogbookstore.com/shades-of-grief-echoes-of-hope-from-the-darkness/) [**VMP Genetics**](https://www.vmpgenetics.com/) [**Realm of Caring Foundation**](https://realmofcaring.org/) [**Georgia’s Hope**](https://georgiashope.com/) **CONNECT WITH MITOACTION** Website Facebook Twitter Instagram LinkedIn **Tags:** energy in action, medical marijuana, podcast **Resource Categories:** Care Management, Day-to-Day with Mito, Treatments **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 104: Courageous Parents Network](https://www.mitoaction.org/resources/energy-in-action-passionate-life-of-josie-copy-copy-copy/) **Published:** February 21, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [](https://app.castos.com/podcasts/18538) ![](https://www.mitoaction.org/wp-content/uploads/2024/02/Episode-104-Morris-Lord-1024x1024.png)Blyth Lord and Liz Morris join me from the Courageous Parents Network, an organization that offers a lot of resources for parents and caretakers, from diagnosis to losing a child and every stage in between— it’s like a warm hug! **EPISODE HIGHLIGHTS** **What is Courageous Parents Network (CPN)?** Courageous Parents Network is a national non-profit organization that orients and empowers parents and others caring for children with serious medical conditions, by providing resources and tools that reflect the experience and perspective of other families and clinicians. We do this through producing and curating digital resources, available on our website and through live programming. CPN was inspired through my experience as mother of a child with a rare genetic condition who died shortly after her second birthday. A lot of what informed the creation of CPN was through my lived experience, but everything it has become is because of the network of parents and clinicians who have contributed their experiences and perspectives. **Can you share more about CPN’s live programming?** We started with only a digital platform of professionally produced videos, audio stories, parent-generated blogs and guides, but we realized the need to bring families together in a live setting. Each live session features a parent and clinician expert who leads a talk on a resonant issue such as supporting siblings, dyadic couples coping and patient decision-making. If you aren’t able to join a live event, most recordings are available on our website. **Liz, how did you become involved with CPN?** My son Colson was born in 2016 after a normal pregnancy, but shortly after his birth, he had an irregular newborn screening and was having difficulty eating and maintaining his body temperature. He was diagnosed with mitochondrial disease at four months old through genetic testing. His disease progressed rapidly in the first year and my husband and I grappled with what our son’s life would look like. When Colson was seven months old, we began palliative care and the palliative care team connected me with CPN. I spent time on the CPN website and felt a sense of hope and I felt validated, knowing I could navigate the uncertain future. **What should people know about palliative care?** A palliative care clinician will provide anticipatory guidance to let caregivers know what the likely experience will be over the trajectory of the illness and provide considerations for care. Palliative care is a system for support, a place to talk about difficult things, a system that allows for choice and comfort management. Palliative care can potentially begin at the time of diagnosis and extend over years, where hospice care is provided at the end of life. **What resources does CPN offer parents who have lost a child?** We have a lot of content for bereaved parents, including interviews with other parents who have lost a child, whether it was sudden or anticipated, where they reflect on before and after their child’s passing. We cover topics such as identity as a parent after your child has died, supporting siblings after a child dies and taking care of yourself after your child has died. We also offer a lot of content for parents who are anticipating their child’s end of life. **LINKS & RESOURCES MENTIONED** [**Courageous parents Network Website**](https://courageousparentsnetwork.org/) [**Join CPN**](https://courageousparentsnetwork.org/signup/) [**NeuroJourney Website**](https://neurojourney.courageousparentsnetwork.org/) **CONNECT WITH MITOACTION** Website Facebook Twitter Instagram LinkedIn **Tags:** caretakers, energy in action, parenting, podcast **Resource Categories:** Awareness, Care Management, Day-to-Day with Mito **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 103: Self Care for YOU](https://www.mitoaction.org/resources/energy-in-action-passionate-life-of-josie-copy-copy/) **Published:** February 7, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [](https://app.castos.com/podcasts/18538) ![](https://www.mitoaction.org/wp-content/uploads/2024/02/Episode-103-Becky-Sansbury-1024x1024.png)Author of *After the Shock* and International Resilience and Crisis Recovery Speaker, Becky Sansbury, has provided so much support for the rare disease community. She joins the podcast to share her best self-care advice with our listeners. **EPISODE HIGHLIGHTS** **What inspired the work you do?** Decades ago I was affected by a family crisis and realized I didn’t have resilience. I received help along the way and taught me that help is available and that I could help myself. I served as a hospice Chaplain and I realized through that work that quality of life can mean different things, that it’s not defined by timeframe, and that it spreads beyond the person who is ill or in crisis, extending to the caregivers. Over the years, that principle has guided my own life. **What are the risks of not practicing self-care?** Not caring for yourself leads to decreased effectiveness, health and damaged relationships. Caregivers are also patients, whether or not you have a diagnosis, when you don’t care for yourself, you run the risk of depleting energy, vitality and coping ability. Taking care of yourself is one of the most unselfish thing you can do for yourself and anyone who is depending on you. **Can you introduce your concept of The Four C’s of Stability?** Thinking about a car, there are 4 wheels (the four c’s) required to move the car down a road. The Four C’s of Stability include: comfort, control, community and connection. One of the ways we can feel less overwhelmed is to be aware of when any of your tires may need air. All of the wheels are affected by the components of the other wheels because they roll together. **What about your idea for creating a recipe?** Thinking about a pie, crisis or a chronic condition may prevent you from having the whole pie. But you can break it down, sliver by sliver. The recipe concept says that each sliver is something you can do today to feel comforted, in control, supported by community or connected to resources. While the recipe may change, when you put the concept into practice, it’s like a vacation from whatever may be winding you down. **LINKS & RESOURCES MENTIONED** [**After the Shock**](https://www.amazon.com/After-Shock-Getting-Resilience-Crisis/dp/0692447571) [**CaringBridge**](https://www.caringbridge.org/) **CONNECT WITH MITOACTION** Website Facebook Twitter Instagram LinkedIn **Tags:** energy in action, podcast, self care **Resource Categories:** Awareness, Day-to-Day with Mito **Resource Type:** Podcasts --- ### [Expert Series: Leigh syndrome: A factory for making viruses?](https://www.mitoaction.org/resources/expert-series-leigh-syndrome/) **Published:** January 9, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2024/01/February-2-Peter-McGuire-1024x1024.png)Previously, the McGuire group at NIH reported that children with mitochondrial disease in general experience serious infections which may last longer than expected. Cells impacted by mitochondrial disease present a unique environment that may be facilitative for viral replication. This relationship between compromised mitochondrial function and increased viral activity suggests a complex interplay where cellular energy deficits might inadvertently support the viral lifecycle. https://youtu.be/MCfNfxdj7nQ [View Slides](https://www.mitoaction.org/wp-content/uploads/2024/02/Dr.-Mcguire.pdf) **Tags:** cell function, expert series, leigh syndrome, viruses **Resource Categories:** Leighs Syndrome, Understanding Mito **Resource Type:** Expert Series --- ### [Political Advocacy 101](https://www.mitoaction.org/resources/imc-2023-political-advocacy/) **Published:** January 24, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Stephanie Harry’s presentation on Political Advocacy at the 2023 International Metabolic Conference. https://youtu.be/xFZDoKAarZ0 **Tags:** faod, IMC, political advocacy **Resource Categories:** Advocacy, Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC, IMC 2023 --- ### [Considerations for Rhabdomyolysis And Return to Activity for FAODs](https://www.mitoaction.org/resources/imc-2023-considerations-for-rhabdomyolysis/) **Published:** December 15, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Pamela Tucker’s presentation on Rhabdomyolysis at the 2023 International Metabolic Conference. https://youtu.be/1Enq0msOVnc **Tags:** Activity, faod, IMC **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD), Understanding Mito **Resource Type:** IMC, IMC 2023 --- ### [Energy in Action Podcast Episode 102: Advocate for YOU](https://www.mitoaction.org/resources/energy-in-action-passionate-life-of-josie-copy/) **Published:** January 17, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [](https://app.castos.com/podcasts/18538) ![](https://www.mitoaction.org/wp-content/uploads/2024/01/Episode-102-Jen-Owen-1024x1024.png)Jen Owen is a mito patient and mito mom, joining me to share her personal journey having mito, about her diagnosis journey, her family and how to best advocate for yourself when you’re affected by health issues. **EPISODE HIGHLIGHTS** **Can you share about your mitochondrial disease journey?** I experienced 15 years or more of misdiagnosis of more familiar conditions. Because doctors were treating something I didn’t have, I now have other medical issues, like Cushing disease, brought on by the use of steroids. I don’t want my kids to go through what I have and fight for the right diagnosis, medical care, medications and treatments they need. When I was diagnosed with mitochondrial disease, my daughter was experiencing parallel symptoms. After a surgery, she had complications from anesthesia and the doctors and I was later hospitalized with elevated lactic acid levels. My daughter also had high lactic acid levels and we realized that what we were experiencing was likely the same cause. **What is the importance of your kids advocating for themselves?** It’s important to me that my kids know how to advocate for themselves. I want to instill in my kids that this is a fight they’ll have the rest of their lives and they have to advocate for their healthcare and take ownership of their own healthcare and well-being. I also stress the importance of pacing themselves and managing their energy and activities. I try to teach my kids shortcuts in their day-to-day lives because they’ll need the knowledge one day and I had to learn some of these things the hard way. **Can you tell us about Buddy Ball?** Our family is passionate about softball and Buddy Ball is a program where kids of any level or disability are able to play on a team. It doesn’t matter if the player is in a wheelchair, is on the spectrum, has a j-tube or port, or if they’re verbal or non-verbal. Anyone can play and no one is excluded. We play one game a week and we don’t keep score. We partner each player with a peer, or buddy, that does anything the player can’t do on their own. The kids are amazing and such an inspiration. **LINKS & RESOURCES MENTIONED** [**Bambino Buddy-Ball**](https://tshq.bluesombrero.com/Default.aspx?tabid=2748542) [**Buddy Ball gives kids with disabilities a chance to play ball in Brooksville**](https://www.abcactionnews.com/news/region-citrus-hernando/buddy-ball-gives-kids-with-disabilities-a-chance-to-play-ball-in-brooksville) [**Hernando County’s Buddy Ball is one step closer to getting mats for players**](https://ca.sports.yahoo.com/video/hernando-countys-buddy-ball-one-231618451.html) [**Hernando County’s Buddy Ball program gets mats to help players**](https://www.abcactionnews.com/news/region-citrus-hernando/hernando-countys-buddy-ball-program-gets-mats-to-help-players?fbclid=IwAR1PrPHt5krKD5AgXRmkshV2G40FU1Elzlza6wSA-xgiLirkRROgpojSDY8) **CONNECT WITH MITOACTION** Website Facebook Twitter Instagram LinkedIn **Tags:** energy in action, podcast **Resource Categories:** Awareness, Day-to-Day with Mito **Resource Type:** Podcasts --- ### [2024 Mito Town Meeting](https://www.mitoaction.org/resources/2024-mito-town-meeting/) **Published:** November 27, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2023/10/Mito-Town-Meeting-Website-Banner-Template-1-1024x296.png)The annual mito town meeting is our way of kicking off the new year by sharing all that we have in store for the next 12 months! We will hear from organizations and companies around the globe that have special opportunities, programs, and projects for patients and families affected by mitochondrial disease. https://youtu.be/TUhAUZThniw Watch the Mito Town Meeting recording here! **Take a look at the agenda for our 2024 Town Meeting!** [2024-MitoAction-Town-Meeting-Agenda](https://www.mitoaction.org/wp-content/uploads/2023/11/2024-MitoAction-Town-Meeting-Agenda.pdf) **Tags:** expert series, mito town meeting, research, Town Meeting **Resource Categories:** Research, Town Hall Meetings **Resource Type:** Expert Series --- ### [Energy in Action Podcast Episode 100: LHON Collective](https://www.mitoaction.org/resources/energy-in-action-podcast-lhon-collective/) **Published:** December 13, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [](https://app.castos.com/podcasts/18538) ![](https://www.mitoaction.org/wp-content/uploads/2024/01/Episode-100-LHON--1024x1024.png) **EPISODE HIGHLIGHTS** **What is LHON?** Leber Hereditary Optic Neuropathy (LHON) is caused by a mutation in the mitochondrial DNA. Symptoms include sudden, severe, painless loss of central vision, usually first in one eye, then within a few months in the other. **How did the quick decline in your son’s vision affect his mental health?** This is a large part of why we created the LHON Collective. My son was devastated after he was diagnosed in college and went through all the stages of grief as he learned to cope. He had to rediscover passions, his career path changed and he got involved instead in inspirational speaking, giving talks to raise awareness and share his story. **Malinda, how has a sudden onset of symptoms affected your kids?** My son finished out the eighth grade advocating for himself with the help and guidance of a teacher for the visually impaired. She consulted his teachers and provided academic support. He took an interest in running, so we found a coach that specialized in visually impaired runners. He joined a run club, and this year, he has joined the cross-country team as the first visually impaired person in the history of the school, which he’s proud of. **Can you tell us about the LHON Collective and your goals for the organization?** LHON Collective is an evolution of the work that’s been going on for over 15 years. We intend to work collectively with everyone who has an interest in advancing the treatment of LHON and work globally. Our LHON Facebook groups connect people around the world, sharing important information and empowering them based on where they are demographically or how they are affected. We also host Zoom meetings and conferences to further connect people and drive and advance research forward. **LINKS & RESOURCES MENTIONED** [**LHON Website**](https://www.lhon.org/) [**LHON Communities**](https://www.lhon.org/community) [**RareX Medical Registry**](https://rare-x.org/) [**LHON – Data Collection Program**](https://lhon.rare-x.org/) **CONNECT WITH MITOACTION** Website Facebook Twitter Instagram LinkedIn **Tags:** energy in action, LHON, mental health, podcast **Resource Categories:** Awareness, Day-to-Day with Mito, LHON **Resource Type:** Podcasts --- ### [Expert Series: Stride Study for PMM patients](https://www.mitoaction.org/resources/expert-series-reneo-stride-update/) **Published:** December 20, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2023/12/January-4-Alex-Dorenbaum-1024x1024.png)Join MitoAction and Dr. Alex Dorenbaum, Chief Medical Officer at Reneo Pharmaceuticals, as they discuss the Stride Study results for mavodelpar in Primary Mitochondria Myopathy. This will be a roundtable discussion format so patients and clinicians can ask their questions. https://youtu.be/IVvIQYgiqI0 **Tags:** expert series, mito update, Reneo **Resource Categories:** Clinical Trials, Research, Treatments, Understanding Mito **Resource Type:** Expert Series --- ### [Energy in Action Podcast Episode 101: The Passionate Life of Josie](https://www.mitoaction.org/resources/energy-in-action-passionate-life-of-josie/) **Published:** January 9, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [](https://app.castos.com/podcasts/18538) ![](https://www.mitoaction.org/wp-content/uploads/2024/01/Episode-101-Josie-Van-Londen-1024x1024.png) Josie van Londen suffers from two interlinked mitochondrial conditions she was diagnosed with as an adult, at the height of her career as an oncologist. Despite her diagnosis and the changes she had to make in her life and career, Josie continues to create meaning in her life in the way she knows best— helping those living and beating cancer. **EPISODE HIGHLIGHTS** **Can you share what your diagnostic journey has been like?** I worked as a medical oncologist, treating and caring for newly diagnosed cancer patients. This was important to me and is still a large part of my identity. Over the years, my stamina was less and less without explanation. My energy was compromised at work and I gave up one thing after another. After Covid, I left the hospital on an accelerated course to a wheelchair. Then I started having trouble breathing, sitting up and talking. I scheduled an appointment with a mitochondrial specialist and I received a diagnosis, which helped me better understand the symptoms I had been experiencing for years. **What inspired a career in oncology?** I grew up in the Netherlands and they don’t have college there. You go straight into the school of the profession you’ve chosen when you graduate school. I wanted to be in medicine because I was motivated to understand the body and I wanted to interact with other people. I like mysteries and find the work to be interesting. I appreciate the difference you can make in someone’s life. **How did you decide when to leave your job as an oncologist?** I first took a month off to rest, had discussions with my husband and decide for sure if I wanted to go on disability. Resting didn’t help and my mito doctor advised me that genetic testing results revealed my symptoms were only going to get worse. I decided to go on disability with the support of my husband. **What work are you doing today?** It was hard to leave my job so abruptly because I didn’t have closure with many of my patients. I started looking for new ways that I could be helpful. I volunteer with Cancer Bridges, a facility that supports cancer patients and their families. I also share on my website as I can, writing blogs to empower cancer survivors on their healing journey. and posting on social media. **LINKS & RESOURCES MENTIONED** [**Cancer Survivor MD Website**](http://www.cancersurvivormd.org) [**CancerSurvivorMD Facebook**](https://www.facebook.com/CancerSurvivorMD/) [**CancerSurvivorMD Instagram**](https://www.instagram.com/cancersurvivormd/) [**CancerSurvivorMD TikTok**](https://www.tiktok.com/@cancersurvivormd) [**CancerSurvivorMD YouTube**](https://www.youtube.com/@CancerSurvivorMD) [**Cancer Bridges**](https://cancerbridges.org/) **CONNECT WITH MITOACTION** Website Facebook Twitter Instagram LinkedIn **Tags:** energy in action, podcast **Resource Categories:** Awareness, Day-to-Day with Mito **Resource Type:** Podcasts --- ### [Infection, Immunity, and FAOD](https://www.mitoaction.org/resources/ultragenyx-qa-a-conversation-with-ultragenyxs-chief-medical-officer-insight-into-future-lc-faod-research-30-min-camille-bedrosian-and-a-conversation-with-ultragenyxs-global/) **Published:** August 13, 2020 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=5Hgs5xEykWA&list=PLTrGsiiotyLd2VEz2j3TJRrQzfQPYxx45&index=14 **Resource Categories:** Clinical Trials, Fatty Acid Oxidation Disorder (FAOD), Treatments **Resource Type:** IMC, IMC 2020 --- ### [Ultragenyx Commitment to the LC-FAOD Patient Community](https://www.mitoaction.org/resources/ultragenyx-commitment-to-the-lc-faod-patient-community/) **Published:** August 5, 2020 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=CE-rDajrrxo&list=PLTrGsiiotyLd2VEz2j3TJRrQzfQPYxx45&index=13 **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC, IMC 2020 --- ### [The Magic Bracelet Q&A](https://www.mitoaction.org/resources/the-magic-bracelet-qa/) **Published:** August 6, 2020 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=HeAVKl3nkmM&list=PLTrGsiiotyLd2VEz2j3TJRrQzfQPYxx45&index=16 **Resource Categories:** Day-to-Day with Mito **Resource Type:** IMC, IMC 2020 --- ### [Sick Day & Emergency Protocols: Helpful and Potentially Harmful](https://www.mitoaction.org/resources/sick-day-emergency-protocols-helpful-and-potentially-harmful/) **Published:** August 5, 2020 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=5nrHPV4tsig&list=PLTrGsiiotyLd2VEz2j3TJRrQzfQPYxx45&index=12 **Resource Categories:** Day-to-Day with Mito, Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC, IMC 2020 --- ### [Research & Clinical Trials Update](https://www.mitoaction.org/resources/research-clinical-trials-update/) **Published:** August 6, 2020 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=2PthJ0uQT2E&list=PLTrGsiiotyLd2VEz2j3TJRrQzfQPYxx45&index=11 **Resource Categories:** Clinical Trials, Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC, IMC 2020 --- ### [Preparing For a New Normal in COVID-19 and Being Your Best Advocate](https://www.mitoaction.org/resources/preparing-for-a-new-normal-in-covid-19-and-being-your-best-advocate/) **Published:** August 5, 2020 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=dM9GogdOjDU&list=PLTrGsiiotyLd2VEz2j3TJRrQzfQPYxx45&index=10 **Resource Categories:** Advocacy, Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC, IMC 2020 --- ### [Pre-Clinical Treatment Studies in FAOD](https://www.mitoaction.org/resources/pre-clinical-treatment-studies-in-faod/) **Published:** August 6, 2020 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=GH46Q2dJ-BU&list=PLTrGsiiotyLd2VEz2j3TJRrQzfQPYxx45&index=9 **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC, IMC 2020 --- ### [Practical Tips from the VLCAD Nutrition Guidelines and Toolkit - Part 2](https://www.mitoaction.org/resources/practical-tips-from-the-vlcad-nutrition-guidelines-and-toolkit-part-2/) **Published:** August 6, 2020 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=xoDdv1O0Cy8&list=PLTrGsiiotyLd2VEz2j3TJRrQzfQPYxx45&index=8 **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD), Nutrition **Resource Type:** IMC, IMC 2020 --- ### [Practical Tips from the VLCAD Nutrition Guidelines and Toolkit - Part 1](https://www.mitoaction.org/resources/practical-tips-from-the-vlcad-nutrition-guidelines-and-toolkit-part-1/) **Published:** August 6, 2020 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=qTc5CIptmGQ&list=PLTrGsiiotyLd2VEz2j3TJRrQzfQPYxx45&index=7 **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD), Nutrition **Resource Type:** IMC, IMC 2020 --- ### [Newborn Screening in FAOD](https://www.mitoaction.org/resources/newborn-screening-in-faod/) **Published:** August 5, 2020 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=CVlK1MXPlyo&list=PLTrGsiiotyLd2VEz2j3TJRrQzfQPYxx45&index=6 **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC, IMC 2020 --- ### [MyMito App - Taking Control of Your Care](https://www.mitoaction.org/resources/mitoaction-mobile-taking-control-of-your-care/) **Published:** August 5, 2020 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=FqbTkbu5XVE&list=PLTrGsiiotyLd2VEz2j3TJRrQzfQPYxx45&index=5 **Resource Categories:** Day-to-Day with Mito, Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC, IMC 2020 --- ### [Life Transitions from Pediatric to Adult Patients with Rare Disorders](https://www.mitoaction.org/resources/life-transitions-from-pediatric-to-adult-patients-with-rare-disorders/) **Published:** August 6, 2020 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=qOGyU_PFmvY&list=PLTrGsiiotyLd2VEz2j3TJRrQzfQPYxx45&index=4 **Resource Categories:** Day-to-Day with Mito, Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC, IMC 2020 --- ### [Disability Benefits & Planning](https://www.mitoaction.org/resources/disability-benefits-planning/) **Published:** August 6, 2020 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=_yri8JykQlI&list=PLTrGsiiotyLd2VEz2j3TJRrQzfQPYxx45&index=3 **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD), Insurance **Resource Type:** IMC, IMC 2020 --- ### [Caregiver Panel Discussion](https://www.mitoaction.org/resources/caregiver-panel-discussion/) **Published:** August 6, 2020 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=1sNvFH6lnro&list=PLTrGsiiotyLd2VEz2j3TJRrQzfQPYxx45&index=15 **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC, IMC 2020 --- ### [Cardiac Issues & FAOD](https://www.mitoaction.org/resources/cardiac-issues-faod/) **Published:** August 6, 2020 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=po2Ws_QdfFs&list=PLTrGsiiotyLd2VEz2j3TJRrQzfQPYxx45&index=2 **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC, IMC 2020 --- ### [Acylcarnitines: What are They and What Do They Mean?](https://www.mitoaction.org/resources/acylcarnitines-what-are-they-and-what-do-they-mean/) **Published:** August 6, 2020 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.youtube.com/watch?v=n38vkJGG6xM **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD), Treatments **Resource Type:** IMC, IMC 2020 --- ### [Expert Series: Ceramides: The Unmasked Drivers of VLCADD-Induced Heart Failure](https://www.mitoaction.org/resources/expert-series-mito-ceramides-vlcadd-induced-heart-failure/) **Published:** November 15, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2023/09/December-6-1-1-1024x1024.png)Despite advances in newborn screening and treatment of fatty acid oxidation disorders, patients with very-long-chain acyl-CoA dehydrogenase deficiency (VLCADD) continue to suffer from heart failure. Marie Norris will discuss her preliminary data which suggests that lipotoxicity, largely mediated by the accumulation of ceramides, is a major contributor to VLCADD-induced heart failure. Ms. Norris will discuss the role of ceramides, while addressing the mounting evidence that elevated ceramides contribute to heart failure in humans/rodents and that cardiac function improves with ceramide depletion. https://youtu.be/t1yhkRwfcno **Tags:** ceramides, expert series, faod, VLCADD **Resource Categories:** Diagnosis, Understanding Mito **Resource Type:** Expert Series, FAOD Expert Series --- ### [Energy in Action Podcast Episode 99: Mito Quilts of Hope](https://www.mitoaction.org/resources/energy-in-action-podcast-quilts-of-hope/) **Published:** November 29, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [](https://app.castos.com/podcasts/18538) ![](https://www.mitoaction.org/wp-content/uploads/2023/11/Episode-99-Christine-Knox-1-1024x1024.png) **EPISODE HIGHLIGHTS** **How were you introduced to the mito community?** My parents noticed when I was young that I would fall asleep anywhere, I didn’t gain weight easily and I didn’t have the same level of energy as other kids. It wasn’t until I was an adult that I got sick with the flu and couldn’t recover. I saw my doctor, initial testing didn’t provide answers, and I was referred to an internal medicine doctor who determined I had mitochondrial disease, later confirmed by genetic testing. **What are your biggest day-to-day challenges?** Managing expectations of myself and the reality of what I’m able to do. It’s a constant juggling act of what needs to get done, what my energy level will allow, and what I have to give up or what trade-offs need to happen to get things done. **Can you tell us about Mito Quilts of Hope?** To supplement my income as a student, I worked in a flower shop and discovered I loved being creative. Over the years I worked for other florists, learning along the way, and eventually started my own floral company. When I got sick from mitochondrial disease I had to close the business. I missed having the business and missed being creative. Going through my diagnostic journey, I realized so few people knew about mitochondrial disease. I decided to use Mito Awareness month to launch Mito Quilts of Hope to spread comfort and awareness. I started a website and connected with other quilters to help me make quilts for mito patients. Mito Action and Mito Canada help with the postage to distribute the quilts. **How does someone receive a quilt?** Visit my website and register to receive a quilt by answering a few questions. If you’re a quilter and you’d like to get involved by making a quilt, you can visit the website to register and all of the quilting information is provided for you online. **CONNECT WITH CHRISTINE** **Email:** or [**Mito Quilts of Hope on Facebook**](https://www.facebook.com/quilthope) **LINKS & RESOURCES MENTIONED** [**Mito Quilts of Hope Website**](https://www.mitoquiltsofhope.org/) [**Register to Receive a Quilt**](https://www.mitoquiltsofhope.org/receive-a-quilt) [**Register to Make a Quilt**](https://www.mitoquiltsofhope.org/create-a-quilt) [**MitoCanada**](https://mitocanada.org/) **CONNECT WITH MITOACTION** Website Facebook Twitter Instagram LinkedIn **Tags:** energy in action, life with mito, mito quilts of hope, podcast **Resource Categories:** Advocacy, Awareness, Day-to-Day with Mito **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 98: Introducing Positively Walking with Mito Podcast](https://www.mitoaction.org/resources/energy-in-action-podcast-positively-walking-with-mito/) **Published:** November 15, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [](https://app.castos.com/podcasts/18538) ![](https://www.mitoaction.org/wp-content/uploads/2023/11/Episode-98-Genevieve-and-alex-1024x1024.png) ![](https://www.mitoaction.org/wp-content/uploads/2023/11/Positively-Walking-with-Mito-Logo-1024x1024.jpg)**EPISODE HIGHLIGHTS** Highlights Coming Soon! **CONNECT WITH MITOACTION** Website Facebook Twitter Instagram LinkedIn **Tags:** energy in action, life with mito, podcast, positivity **Resource Categories:** Awareness, Day-to-Day with Mito, Understanding Mito **Resource Type:** Podcasts --- ### [Expert Series: Immune Cell Function in Mitochondrial Disease](https://www.mitoaction.org/resources/expert-series-mito-immune-cell-function/) **Published:** November 3, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2023/08/November-3-Melissa-Walker-1024x1024.png)Immune dysfunction is increasingly appreciated in mitochondrial disorders. Join Dr. Melissa Walker to review the small number of known immune manifestations of specific primary mitochondrial disorders as well as emerging studies on non-specific immune dysfunction in mitochondrial disease more broadly. https://youtu.be/n-8tzj4Bcgk [View Slides](https://www.mitoaction.org/wp-content/uploads/2023/11/20231103-MitoAction-Talk.pdf) **Tags:** expert series, immune cell function, immune dysfunction, primary mitochondrial **Resource Categories:** Diagnosis, Understanding Mito **Resource Type:** Expert Series --- ### [Expert Series: Ultra-Rare Mitochondrial Diseases: Development Challenges and Opportunities](https://www.mitoaction.org/resources/expert-series-mito-ultra-rare-mitochondrial-disease-challenges-opportunities/) **Published:** October 6, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2023/10/Reenie-McCarthy-1024x1024.png)Join CEO of Stealth Biotherapeutics Reenie McCarthy, and special guest Shelley Bowen, Director of Family Services and Advocacy for the Barth Syndrome Foundation, to discuss the health equity challenges faced within the ultra-rare disease space, particularly for mitochondrial targeted therapies, and the potential solutions to overcome these obstacles in therapy development. https://youtu.be/_iQ1HHNVKWI [View Barth Syndrome Foundation Slides](https://www.mitoaction.org/wp-content/uploads/2023/10/October6expertseries.pdf) [View Stealth Slides](https://www.mitoaction.org/wp-content/uploads/2023/10/Stealthexpertseries.pdf) **Tags:** barth syndrome, expert series, opportunities, potential solutions, ultra-rare **Resource Categories:** Diagnosis, Understanding Mito **Resource Type:** Expert Series --- ### [Expert Series: Understanding Upcoming MCADD Trials](https://www.mitoaction.org/resources/expert-series-understanding-upcoming-mcadd-trials/) **Published:** October 26, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2023/11/October-26-Dr-Arnold-1024x1024.png)There are two new MCADD trials that have started in recent months. One explores the use Dojolvi (triheptanoin) and the second the use of phenylbutyrate with MCADD patients. Join MitoAction as Dr. Arnold discusses the science behind both studies, why these substances are being evaluated, and what these studies will look like. If you have any questions about the trials or about participating in either trial, we encourage you to come, learn, and bring your questions! https://www.youtube.com/watch?v=bVoyXTi5Oe8 [View Slides](https://www.mitoaction.org/wp-content/uploads/2023/11/mitoaction-faod-studies-2023.pdf) **Tags:** clinical trials, expert series, faod, MCADD, new studies, opportunities, potential solutions **Resource Categories:** Diagnosis, Fatty Acid Oxidation Disorder (FAOD), Treatments, Understanding Mito **Resource Type:** Expert Series, FAOD Expert Series --- ### [Expert Series: LCHADD Retinopathy Update: Moving Toward a Treatment](https://www.mitoaction.org/resources/expert-series-mito-lchadd-retinopathy-update/) **Published:** November 1, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2023/09/November-1-Melanie-Gillingham-1024x1024.png)Having a better understanding of what things are associated with LCHADD retinopathy can provide insight towards developing treatment. During this presentation, Dr. Gillingham will provide an update on the current results of a natural history study of 40 patients with LCHADD. She will also discuss what factors are associated with retinal structure and function, and how blood biomarkers or genetics might be related. Lastly, Dr. Gillingham will update our FAOD community about her lab’s efforts to treat retinopathy in an LCHADD mouse. https://youtu.be/qCJoVYH8QZ8 [View Slides](https://www.mitoaction.org/wp-content/uploads/2023/11/Mitoaction-family-pres-110123.pdf) **Tags:** expert series, LCHADD, LCHADD Retinopathy, treatment **Resource Categories:** Diagnosis, Understanding Mito **Resource Type:** Expert Series, FAOD Expert Series --- ### [Mitochondria and Psychiatry](https://www.mitoaction.org/resources/mitochondria-and-psychiatry/) **Published:** March 1, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This presentation will cover the evidence that, at least for a subset of people with bipolar disorder, mitochondria may be dysregulated in the brain. Medications used for bipolar disorder can change mitochondrial function and several novel strategies can target mitochondria. https://www.youtube.com/watch?v=HAIvPNQmzAs [View Slides](https://www.mitoaction.org/wp-content/uploads/2023/10/Mitochondria-and-Psych1.pdf) **Tags:** expert series, mental health, mito, mitochondria, psychiatry **Resource Categories:** Psychology, Understanding Mito **Resource Type:** Expert Series --- ### [Finding the sweet spot: diagnosis and management of diabetes mellitus and hypoglycemia in individuals with mitochondrial disorders](https://www.mitoaction.org/resources/finding-the-sweet-spot-diagnosis-and-management-of-diabetes-mellitus-and-hypoglycemia-in-individuals-with-mitochondrial-disorders/) **Published:** April 14, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Individuals with mitochondrial disorders are at increased risk of developing both high blood sugars (diabetes mellitus) and low blood sugars (hypoglycemia). We will review considerations for diagnosis and management of these conditions, and touch on related endocrine problems, including growth problems and adrenal insufficiency. Our goal is for individuals and families to be well informed for future discussions of these endocrine issues with their clinical care teams. https://www.youtube.com/watch?v=vjr3WdSxlcE **Tags:** expert series, mito, mitochondria **Resource Categories:** Diabetes **Resource Type:** Expert Series --- ### [Pyruvate Dehydrogenase, Compassionate Use & Clinical Trials](https://www.mitoaction.org/resources/pyruvate-dehydrogenase-compassionate-use-clinical-trials/) **Published:** April 17, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This presentation will discuss lactic acidosis and focus on pyruvate dehydrogenase as a case study to explore how compassionate use and clinical trials can be used in patients with mitochondrial disease. We will discuss the importance of family engagement for understanding natural history and disease prevalence in order to ultimately result in successful therapy development. https://www.youtube.com/watch?v=0MBvYsVC4IY **Tags:** clinical trials, expert series, mitochondria **Resource Categories:** Clinical Trials **Resource Type:** Expert Series --- ### [Aging with Mito](https://www.mitoaction.org/resources/aging-with-mito/) **Published:** June 1, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Mark Tarnopolsky, founder, CEO and CSO of Exerkine Corporation, a biotechnology/nutraceutical company developing therapies for aging, obesity, muscular dystrophy, and mitochondrial disorders, discusses aging as it relates to mito in this Expert Series recording. *Original Airdate: June 16, 2023* https://youtu.be/ueYwBja7IXI [View Slides](https://www.mitoaction.org/wp-content/uploads/2023/10/Aging-and-mito-disease-Mitoaction-2023.pdf) **Resource Categories:** Aging **Resource Type:** Expert Series --- ### [Energy in Action Podcast Episode 97: The Champ Foundation](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-97-champs-foundation/) **Published:** October 11, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2023/10/Episode-97-Elizabeth-Reynolds-1-1024x1024.png) **EPISODE HIGHLIGHTS** Elizabeth Reynolds is a mom of three children and her oldest, William, has Pearson syndrome, a multi-system disease caused by a deletion in mitochondrial DNA. She is also the Founder of [The Champ Foundation](https://www.thechampfoundation.org/index.html), which supports research toward better treatment and a cure for single large-scale mitochondrial deletion syndromes (SLSMDS), like Pearson syndrome. **How do you keep appointments and records organized and what advice do you have for other parents to stay organized?** It’s a learning process. I have done a lot of note-taking and documenting to learn how to stay organized. I’ve found a routine and a method that works to stay organized and to effectively coordinate and communicate with William’s physician care team. You can create a document for yourself to refer to and have doctors sign off on your document at appointments to serve as an extra layer of organizing and validating information. **Can you tell us about the foundation you started?** A few weeks after William was diagnosed, we started the foundation with the immediate realization that there wasn’t a treatment or cure for Pearson syndrome. We also found there wasn’t funding or research focused on Pearson syndrome and we felt we needed to start the foundation with an exclusive focus on our rare, mitochondrial deletion disorder specifically. Our primary goal was fundraising and in 2019 we were awarded the Chan Zuckerberg Rare As One grant, which helped us transform our purpose and goal of funding academic institution research, but also to help other families. We started the Champ Foundation Registry, funded a biorepository at Boston Children’s Hospital and a multi-site natural history study to better understand the trajectory of the disorders. **What are the goals for the foundation over the coming years?** Our goal is to use the information gathered from the registry and family surveys to show the FDA and other agencies that we are learning outcomes and that clinical trials should be targeted for KSS and Pearson syndrome. **How can a family with a new diagnosis get involved with The Champ Foundation?** Lots of families are introduced to us right after receiving a diagnosis, so we have a checklist with a step-by-step process of what to do available on our website. We also recommend families get involved in research, participating in our registry and natural history study. Our foundation can assist with travel costs to participate in the natural history study if that’s a barrier for a family. **LINKS & RESOURCES MENTIONED** [**Champ Foundation Registry**](https://www.thechampfoundation.org/registry.html) [**Newly Diagnosed Checklist**](https://www.thechampfoundation.org/newly-diagnosed.html) [**Email Elizabeth**](mailto:elizabeth.reynolds@thechampfoundation.org) **CONNECT WITH MITOACTION** Website Facebook Twitter Instagram LinkedIn **Tags:** energy in action, Pearson Syndrome, podcast **Resource Categories:** Research, Treatments, Understanding Mito **Resource Type:** Podcasts --- ### [2023 Mito Town Meeting](https://www.mitoaction.org/resources/2023-mito-town-meeting/) **Published:** March 1, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2023/10/Mito-Town-Meeting-Website-Banner-Template-1024x296.png)The annual mito town meeting is our way of kicking off the new year by sharing all that we have in store for the next 12 months! We will hear from organizations and companies around the globe that have special opportunities, programs and projects for patients and families affected by mitochondrial disease. **Tags:** expert series, mito town meeting, research, Town Meeting **Resource Categories:** Research, Town Hall Meetings **Resource Type:** Expert Series --- ### [Energy in Action Podcast Episode 96: Employed with Mito Disease](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-96-employed-with-mito-disease/) **Published:** October 4, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2023/10/Episode-96-EIA-1-1024x1024.png) **EPISODE HIGHLIGHTS** **Tasia, can you tell us about yourself and the work you do?** I’m 31 and I was diagnosed at a young age with fatty oxidation disorder. As a teen I started a clinical trial until it became an FDA-approved medication and it worked well for me. I went to business school and I currently work in research and development as a government contractor. I have a typical desk job that suits my needs. My employer has remained flexible for me to attend appointments and otherwise manage my health. **Bill, can you tell us about yourself and the work you do?** I live in Alaska and I have a pathogenic mutation but no final diagnosis yet. I’ve gone through a lot of genetic testing that revealed my genetic mutation. I work as a commercial diver and I work on bridges, dams, oil platforms and in heavy construction. It’s all very physically-exerting work. I’ve been doing this work for 25 years, but with the health changes I’ve experienced, I’ve had to stop going on jobs and in the water. This accelerated my move into an office role and my employer has made a lot of accommodations for me. **Nina, can you tell us about yourself and the work you do?** I’m from Florida and about two years ago, I had a sudden onset of symptoms after taking a medication and it took over a year to be diagnosed with POLG2 which is a chronic and progressive condition. I’m currently working part time as a customer service representative and I’m able to work from home. I’m finding it’s increasingly difficult to talk and type simultaneously, so I’m working with a vocational rehabilitation program to transition to a more behind-the-scenes role that will better support my health and needs. **Bill, do you feel like fatigue caused by stress affects you more by the end of the day?** This has been a struggle for me. To some degree, the demands of an office role are more taxing than a physical role. If I use all my energy at work, I’m affected when I go home because I don’t have the energy to do tasks at home. Managing stress and trying not to give everything to my work is a constant balancing act. **Tasia, do you feel any guilt about not being able to produce as much or perform as well at work?** I feel the need to compensate when I’m feeling well, going the extra mile. The next week, I may be functioning at only 75%. I think it’s common to feel the need to do more when you can to make up for when you’re lacking. I’ve learned I can’t say yes to everything and I need to find balance in the workplace, not allowing my urge to over-compensate get me in trouble. **Nina, have you had any difficult discussions about mitochondrial disease with your boss?** I’ve had a few awkward conversations with employers. I think it’s difficult to talk about mitochondrial disease and the impact it has on you because it can be an invisible illness. There’s also restrictions about what you can and can’t share about accommodations. **What advice do you have for young people at the beginning of their career who will need to navigate the demands of the workforce and their health and wellbeing but want to grow professionally?** Widen your possibilities so you can work in a field that interests you, but has a lot of variety in the job options. Understand you’re an asset, not a burden. Don’t be afraid to ask for what you need to perform your job. Explore alternate ways to partake in your interests, even if you can’t do it full time as a job. Learn about what employers can and can’t ask and what they do and don’t have to offer in terms of accommodations so you can advocate for yourself. **CONNECT WITH MITOACTION** Website Facebook Twitter Instagram LinkedIn **Tags:** employed with mito, employment, energy in action, patient stories, podcast **Resource Categories:** Research, Treatments, Understanding Mito **Resource Type:** Podcasts --- ### [Exercise and Nutritional Issues in Mitochondrial Disease](https://www.mitoaction.org/resources/exercisenutrition/) **Published:** July 15, 2022 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction and Dr. Mark Tarnopolsky to discuss: 1. What exercises are good for mitochondrial disease and how do we exercise safely? 2. Are there any diets or dietary concerns for patients with mitochondrial disease? 3. What is the current status of the mitochondrial cocktail? https://youtu.be/GpiKj_Qt7T4 **Resource Categories:** Exercise, Nutrition **Resource Type:** Expert Series --- ### [Parents as Rare Podcast Episode 95: Mito Awareness Week & Parent Stories from the FAOD Community - Live from the IMC](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-92-faod-stories-live-from-the-imc-copy/) **Published:** September 20, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2023/09/92023-1024x1024.png) PARENTS AS RARE – EPISODE 095 Patient Stories from the FAOD Community – Live from the IMC In this special, live-recorded episode, rare moms attending the 2023 Metobolic Conference share their stories with me. **EPISODE HIGHLIGHTS** **Lynne** Alex is a 20 year old college student who has LCHAD. Her journey was tough from the beginning, functioning pretty normally at an early age and then experiencing muscle function decline as she grew. I’ve enjoyed watching Alex own her story and own her health and communication with her doctors. As her mom, I don’t know how to not be her advocate, but she’s 20 years old and she’s more than capable of running the world. I’ve realized in the last year that I have a voice and I have my own story, being a parent who has been on this journey with Alex. We’ve accomplished things we never thought we would and we’ve learned a lot along the way. I do feel a little lost in the current season because I was a stay-at-home mom and Alex reinforced my reasons for being a stay-at-home mom, but the transition to college has made empty-nesting really hard. **Amber** When Blake was born early, he was flagged early for LCHAD through newborn screening, starting a ten month journey of complications to a diagnosis. We’ve learned a lot along the way medically, but also how to advocate and stand up for our kids. **Christy** I have four children and my two oldest have LCHAD. We didn’t have a typical diagnosis through newborn screening. In 2013, my six month old son had a medical crisis. When we arrived at the hospital, he was limp and he had unexplained symptoms. We were transferred to another hospital where he received a mis-diagnosis and was released from the hospital after a few days. Six months later, he experienced the same symptoms again and I took him to the hospital. We were transferred to another hospital and we met with a geneticist who provided a correct diagnosis of fatty acid oxidation disorder, specifically LCHAD. I had my daughter tested and found out that she also had LCHAD. It was a stressful time, but they’re now ages 10 and 12 and doing great. **Sharickah** At 6 days old, my son was diagnosed with LCHAD through newborn screening. Until I met another mom who also had a child with LCHAD, I spent a lot of time fearful of what the future would hold. She gave me a wealth of information, knowledge and hope. Her son was older, playing sports, out there living life. She had a lot of advice that helped me so much. Having another mom who had been through what I was going through and having her support has been the most meaningful experience of the journey. **Stephanie** My 14 year old son has LCHAD and our journey had a rocky start. Six weeks from my scheduled delivery, I became ill and was admitted to the hospital. I had an emergency c-section and I was transferred to the ICU on life-support the next day. At the time, doctors thought there was resulting damage from the c-section and they did an unsuccessful exploratory surgery. I was on life support for the next 8 days before I received a successful treatment to stop bleeding. When I first got to see Christopher, my arms were so weak that I couldn’t hold him alone. I spent the next year recovering, coming to terms with my own health changes and learning everything I could about LCHAD. Our LCHAD journey has been filled with love, excitement and so many amazing moments and Christopher makes our lives so rich. **RESOURCES MENTIONED** [**Dalia’s Wish**](https://www.mitoaction.org/programs-support/programs/dalias-wish/) [**Marcel’s Way Family Fund**](https://www.mitoaction.org/programs-support/programs/marcelsway/) [**Matthew Harty Camper Fund**](https://www.mitoaction.org/programs-support/programs/mhcf/) [**MitoSantas**](https://www.mitoaction.org/programs-support/programs/mito-santas/) [**Give Kids the World Village**](https://www.gktw.org/) [**I Don’t Know How You Do It Podcast**](https://www.idontknowhowyoudoit.com/) [**PARENTS AS RARE – EPISODE 092 – Patient Stories from the FAOD Community – Live from the IMC**](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-92-faod-stories-live-from-the-imc/) **FOLLOW ADAM JOHNSON** [**Twitter @RareDiseaseDad**](https://twitter.com/rarediseasedad) [**Instagram @RareDiseaseDad**](https://www.instagram.com/rarediseasedad/) [**LinkedIn**](https://www.linkedin.com/in/adam-johnson-8a1473125) **CONNECT WITH MITOACTION** [**Website**](https://www.mitoaction.org/) [**Facebook**](https://www.facebook.com/mitoaction) [**Twitter**](https://twitter.com/mitoaction) [**Instagram**](https://www.instagram.com/mitoaction/) [**LinkedIn**](https://www.linkedin.com/company/mitoaction) **Tags:** Awareness Week, faod, IMC, parents as rare, patient stories, podcast **Resource Categories:** Patient Stories **Resource Type:** IMC, IMC 2023, Podcasts --- ### [Energy in Action Podcast Episode 94: Barth Syndrome - When the Lack of Fair, Equitable and Appropriate Regulatory Review Process Jeopardizes Ultra-Rare Drug Development](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-94-barth-syndrome-ultra-rare-drug-development/) **Published:** September 11, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2023/09/Episode-94.png) **Barth Syndrome – When the Lack of Fair, Equitable and Appropriate Regulatory Review Process Jeopardizes Ultra-Rare Drug Development** Barth Syndrome Foundation Executive Director Emily Milligan, and Director of Family Services & Advocacy, Shelley Bowen join me for a discussion about the latest news surrounding the foundation’s treatment efforts and the families affected by Barth Syndrome. Listeners can help pave the way for future rare and ultra-rare drug development by [signing their petition](https://www.barthsyndrome.org/welcome.html/article/2023/09/12/sign-our-petition-for-a-fair-equitable-and-appropriate-review-of-elamipretide-) to the FDA and speaking out to local representatives. **EPISODE HIGHLIGHTS** **What is Barth Syndrome?** It’s a rare disease, affecting mostly males, that affects about one of a million individuals. We currently have about 130 people in the United States who have been diagnosed. The symptoms include cardiomyopathy, Neutropenia, low muscle mass and muscle weakness, exercise intolerance and feeding problems. Barth Syndrome is often fatal and there aren’t currently any cures for the rare disorder. **Have there been any recent advancements in treatments for Barth Syndrome?** There are no FDA-approved therapies for Barth Syndrome. The latest stage development opportunity we have is a drug called Elamipretide. We’ve been working on this effort for years and we’re hoping the FDA will accept a new drug application for this product. **What benefits does Elamipretide offer Barth Syndrome patients?** One of the greatest burdens that affects quality of life is overwhelming fatigue. With this drug, we’ve seen real-world evidence that patients are feeling better and are able to enjoy life with improved energy. We’ve also seen improved cardiac function. **What determines one research-based drug passing through regulators and one drug not?** There’s a lot of inconsistency around drugs being reviewed at the FDA and it’s frustrating. We have done a lot of work to help the FDA to recognize and appreciate the nuances of the Barth Syndrome community and how ultra-rare it is. Unfortunately, the FDA is asking us to find more patients, but by the definition of ultra-rare, there are no more patients. We are asking for a fair, equitable and fair review by the FDA– for them to look at the open-label extension data, the natural history comparison data and listen to the patient perspectives which will substantiate real-world claims and results. While the FDA has regulatory flexibility, smaller populations can’t conform to the same regulation standards as larger populations. **LINKS AND RESOURCES MENTIONED** [**Barth Syndrome Foundation**](https://www.barthsyndrome.org/welcome.html) [**Sign the BSF petition for a fair, equitable and appropriate review of elamipretide in Barth syndrome by the FDA!**](https://www.change.org/p/fda-please-fairly-review-the-only-potential-treatment-for-barth-syndrome?recruiter=1316174368&recruited_by_id=bc6e9110-516a-11ee-a18e-05d9866873bc&utm_source=share_petition&utm_campaign=share_petition&utm_medium=copylink&utm_content=cl_sharecopy_37404267_en-US%3A4) **CONNECT WITH MITOACTION** Website Facebook Twitter Instagram LinkedIn **Tags:** barth syndrome, energy in action, podcast, ultra-rare drug development **Resource Categories:** Research, Treatments, Understanding Mito **Resource Type:** Podcasts --- ### [Expert Series: At the crossroad of mitochondrial disease and mitochondrial dysfunction](https://www.mitoaction.org/resources/expert-series-mito-confusion/) **Published:** July 25, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2023/07/September-1-Amel-Karaa-2-1024x1024.png)Why are patients with Fibromyalgia, Chronic Fatigue, Lymes diagnosed with mitochondrial disease? How do I know I have Mito? What should my doctor look for to consider further testing for Mito? Join Dr. Amel Karaa for a discussion about misdiagnosed mitochondrial disease. https://youtu.be/dzkLwk6XSaE **Tags:** expert series, mitochondrial dysfunction **Resource Categories:** Diagnosis, Understanding Mito **Resource Type:** Expert Series --- ### [Energy in Action Podcast Episode 93: Navigating school for our kiddos!](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-93-navigating-school-for-your-kiddos/) **Published:** September 6, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2023/09/image.png) **Navigating School for Our Kiddos** Beth Folcher is a parent and teacher. She joins us to kick off the school year with tips for parents of children with mitochondrial conditions so that we can be the best-informed advocates for our children. **EPISODE HIGHLIGHTS** **Can you tell us about your son and your experience with rare disease?** My son was born in 2005 and was flagged at newborn screening for having long-chain 3-hydroxyacyl-CoA dehydrogenase (LCHAD). As a teacher and having experience with children who have complex medical conditions, I knew my son’s diagnosis may impact his learning. My son doesn’t have a learning deficiency, so he has remained in a typical classroom with some special accommodations. He’s now going into his junior year of high school. **What should parents be thinking about going into the school year?** If you have a child with a complex medical condition or diagnosis, get your documentation in place, contact the school and ask for a meeting to set up an IEP and/or 504 plan. An Individualized Education Plan (IEP) covers specialized instructions for students with a learning disability can make progress in the classroom. A 504 is a section of the rehabilitation act of 1973 which describes support guidelines for children with a physical or mental impairment. Both an IEP and a 504 plan are legally binding and must be followed by the school district. If your child needs an IEP, it is written first and the 504 plan is written within the IEP. **What do parents need to do throughout the year to maintain plan guidelines?** The most important thing is respectful, open communication and partnership between teachers and parents. In elementary school, there are more special snacks, birthday celebrations and field trips that need to be handled. When your child is younger and can’t advocate for themselves, there are no stupid questions, so don’t be afraid to reach out to teachers and school staff to ask. Give teachers some grace because when the school year begins, they are taking a lot in, learning a lot about each child and building relationships. **How can you best prepare a child who may need a school accommodation?** Prepare them to ask questions, communicate their needs and ask for help when they need it. To help them learn to advocate for themselves, you can place a sticker on their ID card that identifies they have an IEP or 504. You can arrange for a signal to communicate to the teachers when something is wrong. Involve your child in school meetings and discussions so they can be part of the discussions and understand the support and accommodations they have. CONNECT WITH MITOACTION Website Facebook Twitter Instagram LinkedIn **Tags:** IEP, mito in school, podcast, rare in school **Resource Categories:** School Planning **Resource Type:** Podcasts --- ### [Physicians Panel - Dr. McGuire, Arnold, Korson, Gillingham, Mary Sowa, MS, RD, CSP, and Dr. Longo](https://www.mitoaction.org/resources/physicians-panel-dr-mcguire-arnold-korson-gillingham-mary-sowa-ms-rd-csp-and-dr-longo/) **Published:** January 18, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/yPbXFN9yi1A **Tags:** faod, IMC **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC, IMC 2021 --- ### [Parents as Rare Podcast Episode 92: Patient Stories from the FAOD Community - Live from the IMC](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-92-faod-stories-live-from-the-imc/) **Published:** August 16, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Podcast-Website-Template-5-1024x1024.png) PARENTS AS RARE – EPISODE 092 Patient Stories from the FAOD Community – Live from the IMC I encouraged the FAOD community attending the 2023 Metobolic Conference in Denver, CO to share their stories with me. This is a special, live-recorded episode that features patient stories that paint a beautiful picture of what their journeys have been like and the importance of community. EPISODE HIGHLIGHTS Karen Richtman This is my first time attending this conference and I have felt so embraced. I have learned more information about my diagnosis than anyone has ever provided me. I feel so connected to this community and it’s truly powerful. Sylvia Hood-Washington I am an Environmental Epidemiologist & Historian of Science, Technology, Environment and Medicine, and I am an FOAD patient with Carnitine palmitoyltransferase II (CPT II) deficiency. This is my first conference and I have come here as a 64-year old African American woman who has gone my entire life with CPT II deficiency, undiagnosed and untreated. After a long journey of misdiagnosis, I have created a foundation with a goal of helping anyone who is multi-racial to get the information they need to get genetic testing. Hayley Coble I am a public librarian diagnosed at a young age with MCAD deficiency. As an adult, I’ve been fortunate to be able to manage my disease. A benefit to being diagnosed early has allowed me to take my prescribed medication and only see my specialist once a year. I feel like my condition has been isolating and I don’t know what my future looks like, but I feel lucky to be at the conference to meet all of the people that I have met, even some with MCAD. Tasia Rechisky I’m a 31-year old (Very Long-Chain Acyl-CoA Dehydrogenase Deficiency) VLCAD patient. I was diagnosed through newborn screening and at about 2 years old, my health stabilized, and I grew up leading a pretty normal life. As a teenager, my medication wasn’t working as well and I was less able to keep up with my peers. Today, a lot of my life revolves around managing my health, both mentally and physically. My rare disease experience has led me to talking to people and using my voice for good. Alex Salser I am 20 years old and I have LCHAD. Unlike through childhood, I experienced energy deficits during adolescence, along with other symptoms of LCHAD. I started a rehabilitation journey that put me at the forefront of my community and I want to serve as inspiration for people to stay positive and keep going, one step at a time. RESOURCES MENTIONED International Network for Fatty Acid Oxidation Research and Management (INFORM) Conference FOLLOW ADAM JOHNSON Twitter @RareDiseaseDad Instagram @RareDiseaseDad LinkedIn **Tags:** IMC, parents as rare, patient stories, podcast **Resource Categories:** Patient Stories **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 91: Hailee The Mito Warrior](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-91-hailee-the-mito-warrior/) **Published:** August 11, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Podcast-Website-Template-4-1024x1024.png) **Hailee The Mito Warrior** Hailee is the Ultimate Mito Warrior. She has such a positive attitude, despite the challenges she experiences on a daily basis. She works to create awareness of her mitochondrial disease, and secondary conditions she endures through her videos on YouTube. **EPISODE HIGHLIGHTS** **Can you share about your particular mitochondrial disease and your diagnosis journey?** I have a disease that’s only known to affect me and my mom. I was diagnosed when I was 5 years old. For the first five years of my life, I experienced cyclic vomiting syndrome and I was in and out of the hospital. I also experienced developmental delays and low energy. My parents saw a talk by a doctor who linked cyclic vomiting syndrome to some mitochondrial patients and we scheduled an appointment with him based on other similarities of the disease that I was experiencing. Through muscle biopsy, I was diagnosed with mitochondrial disease and started receiving the mito cocktail and also medication for the cyclic vomiting syndrome. A couple years later, I also did genetic testing which provided more insight. **Who is Hailee outside of your disease and medical challenges?** I really enjoy photography and I find it to be fun and therapeutic. I also love escaping to another world through reading and my dog Willow. I enjoy hanging out with friends and family and traveling whenever I’m able. Something that’s been healing for me has been working on my YouTube channel where I share all about my life with mito. **What are your goals for your YouTube channel?** I vlog my day, even if they are mundane. I share in detail about my illnesses and struggles. I also share about my mental health. I started my channel back at a time when I felt very isolated and now my goal is to use it as a resource for others. I hope my videos help people feel less alone and I hope my videos serve as a source of learning. **What are your goals for the future?** I’ve been in a state of waiting for something to happen medically, taking things one day at a time, but my health is stable right now. I am working on shifting my mindset from day-by-day to the future. One of my goals is to continue to share my story beyond my YouTube channel at speaking engagements and schools to spread awareness. I also hope, if my health permits, that I become a mom one day. **FOLLOW HAILEE** YouTube – https://www.youtube.com/themitowarrior Instagram – https://www.instagram.com/themitowarrior/ **Resource Categories:** Patient Stories **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 90: TK2d Warrior Jeremiah Gracen](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-88-exercise-for-mitochondrial-patients-copy/) **Published:** August 2, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **ENERGY IN ACTION – EPISODE 90** Jeremiah Gracen TK2D Warrior with Mom Aneesa Aneesa is the mom to Jeremiah, a beautiful, wonderful and special boy within our mitochondrial community. Aneesa shares her and Jeremiah’s story to inspire others in the community. **EPISODE HIGHLIGHTS** **Can you share about Jeremiah’s disease and diagnosis journey?** Jeremiah has thymidine kinase 2 deficiency (TK2D), categorized under the mitochondrial DNA depletion or deletion syndrome, further classified as a myopathic form because it affects all the muscles in the body due to a lack of energy to function properly. Jeremiah developed a fever and became weak and floppy. He wasn’t eating well and was struggling to breathe. We were referred for genetic testing and received a diagnosis really quickly. **What changed when you received a diagnosis?** Jeremiah was the youngest patient in the world to be diagnosed, and the earlier the onset, the more progressive the disease. We were notified that there was no treatment and no cure and provided with alternative resources. We reached out to UMDF and we were further connected to additional resources and other families. **What can you share about the clinical trial that Jeremiah is participating in?** There’s not much I can share, but it’s a clinical trial related to his disease and it will be historic. There are currently no treatments available, but I am noticing that Jeremiah is improving, hitting milestones, and I’m sure to document everything along the way. The clinical trial medication in partnership with his quality care seems to be working well. **FOLLOW JEREMIAH** [**Jeremiah Gracen on Facebook**](https://www.facebook.com/JeremiahGracenTK2DWarrior/) [**Jeremiah Gracen on Instagram**](https://www.instagram.com/jeremiahgracentk2dwarrior/?hl=en) [**Jeremiah Gracen on YouTube**](https://www.youtube.com/c/JeremiahGracenTK2DWarrior) [**Jeremiah Gracen on Tiktok**](https://www.tiktok.com/@jeremiahgracentk2d) **LINKS & RESOURCES MENTIONED** [**Tell Me, Teach Me, Is it TK2D?**](https://www.amazon.com/Tell-Me-Teach-TK2D/dp/B0C5KNG6WB) [**Miracle League of Florence County**](https://miracleleagueofflorencecounty.org/) https://miracleleagueofflorencecounty.org/ [**Camp ADAPTabilities**](https://www.speciallyabledmiracles.org/) https://open.spotify.com/show/5POdR3POvv6Mm4JHS9pmln **Tags:** podcast **Resource Categories:** TK2d **Resource Type:** Podcasts --- ### [LCHADD Retinopathy](https://www.mitoaction.org/resources/lchadd-retinopathy/) **Published:** September 6, 2022 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The underlying cause of LCHADD retinopathy is not fully understood. This presentation will look at the research that identifies the cell in the eye that is initially affected and characteristics associated with vision loss. Join Dr. Gillingham as she discusses early data on the natural history study and some new pre-clinical models to test novel treatments for LCHADD retinopathy. https://youtu.be/1VzyG8ToPJ8 **Tags:** expert series, faod, LCHADD, retinopathy **Resource Categories:** LCHADD Retinopathy **Resource Type:** Expert Series, FAOD Expert Series --- ### [Cardiac Complications with LCHADD](https://www.mitoaction.org/resources/cardiac-complications-with-lchadd/) **Published:** September 6, 2022 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Cardiac complications were often identified in symptomatic infants and children before newborn screening. Cardiac dysfunction can re-emerge or present for the first time during metabolic crisis at any age. Join Dr. Melanie Gillingham as she discusses the cardiac presentation in adolescent/young adults with LCHADD and discuss current efforts to better understand this late complication of LCHADD. https://youtu.be/DFSRsvthWDw **Tags:** cardiac complications, expert series, faod, LCHADD **Resource Categories:** Cardiology, Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** Expert Series, FAOD Expert Series --- ### [Expert Series: MELAS and Nitric Oxide](https://www.mitoaction.org/resources/expert-series-melas-and-nitric-oxide/) **Published:** July 11, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This Expert Series will focus on MELAS, the difference between an actual stroke and stroke-like episodes, nitric oxide, and the use of citrulline. MELAS (Mitochondrial Encephalopathy, Lactic Acidosis, and Stroke-like episodes) is one of the most frequent maternally inherited mitochondrial disorders with an estimated prevalence of 60/100,000. There is growing evidence that nitric oxide (NO) deficiency occurs in MELAS and results in impaired blood perfusion that can contribute to several complications, including stroke-like episodes. Dr. Scaglia will discuss the results that led to the implementation of the current phase 1 dose-finding and safety clinical trial that is to determine the maximum tolerated dose (MTD) of citrulline in adults with MELAS. https://youtu.be/aLqyceMsFG0 **Resource Categories:** MELAS **Resource Type:** Expert Series --- ### [Grandparents As Rare: Find Your Bike](https://www.mitoaction.org/resources/grandparents-as-rare-find-your-bike/) **Published:** July 20, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") PARENTS AS RARE – EPISODE 089 Grandparents As Rare: Find Your Bike, With Karen Richtman Karen Richtman shares her patient story, shining light on her journey and her connection to Fatty Acid Oxidation Disorder (FAOD). In addition to being a parent as rare, she is also a grandparent as rare, and she has some wonderful aspirations for future support and advocacy. Life is like riding a bike. Balance yourself, hydrate frequently and be safe. It isn’t how far or how fast you go that counts. No matter whether you are on a self-powered beach bike, tricycle, electric-powered or power-assisted bike (or chair), find joy in the moment. Celebrate the personal success you have, big or small, with assistance or without. It is the freedom of the wind in your face and the joy of the ride. Do what you can, love what you do, no judgment. —Karen Richtman EPISODE HIGHLIGHTS Can you start by sharing a little bit about yourself? I’m 66 years old and I have five grandchildren and one on the way. I’ve been married to my husband Paul for 44 years. I’ve lived with chronic pain my whole life, but I’m an Energizer Bunny with a dying battery. My mito journey started when I was four years old, hospitalized for a reason not disclosed to me. When I was 12 years old, we had done hurdles in gym class and I couldn’t walk the next day. The pain resulted every time I ran or did something athletic and none of my friends had the same pain. When I started college, I developed food allergies and I was falling asleep in class. I went onto law school and falling asleep in class was an ongoing problem. When did your symptoms push you to seek answers and medical guidance? After my husband and I married I started to think about starting a family and saw my doctor for the pain. The doctor said I had a herniated disc and he also found a birth defect, which was an enlarged disc from a joint that hadn’t fully developed in my lower back. I had surgery and we proceeded to get pregnant. I had a good pregnancy and our daughter was born when I was 24. We had our second child when I was 27. I was very tired and I had to nap often. After a back injury I sustained in PT, I had to have another surgery for a fusion at the age of 35. When I went back for a follow up, I let the doctor know that I was still in a lot of pain. I was referred and received a fibromyalgia diagnosis. After a while, I went back to the doctor because I didn’t think the fibromyalgia diagnosis was correct. He referred me to another doctor and I had a muscle biopsy procedure. After months, the results came back that my body doesn’t produce enough of the enzyme that transports fatty acids and I was diagnosed with carnitine palmitoyltransferase II (CPT II) deficiency. How did getting a diagnosis change your life? It was life-changing and it was a turning point for me. I could stop seeking answers and move on to help others. When my doctor who was knowledgeable about and treating my mito passed away, my journey got complicated for years. Finding out there was a MitoAction support group for FAOD has been life-changing because I’ve met people who have the same diagnosis as me. Another turning point for me was getting an electric-assist bike because it was freeing and it helped me embrace my limits. Riding has helped me feel healthy and it makes me happy to be out in nature. What has your experience been like as a grandparent? My earliest experiences with grandchildren was exhausting. Being a grandma isn’t much different than being a mom. I’m still a mom in every way you can imagine to my children, but as a grandma I’ve decided since I can’t keep up with them, I’ll be the grandma who makes things and teaches them to make things. I’ve been creative in thinking about what I can do that the kids will think is fun. We bake cookies, knit, sew, read, paint and write letters. We also go for walks and on bike rides. RESOURCES MENTIONED International Network for Fatty Acid Oxidation Research and Management (INFORM) Conference FOLLOW ADAM JOHNSON Twitter @RareDiseaseDad https://twitter.com/rarediseasedad Instagram @RareDiseaseDad LinkedIn CONNECT WITH MITOACTION Website https://www.mitoaction.org/ Facebook Twitter https://twitter.com/mitoaction Instagram LinkedIn h ttps://www.linkedin.com/company/mitoaction **Resource Categories:** Day-to-Day with Mito **Resource Type:** Podcasts --- ### [Pennsylvania MitoSocial](https://www.mitoaction.org/resources/pennsylvania-mitosocial/) **Published:** July 17, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Register](https://mitoaction-org.zoom.us/meeting/register/tZwpfuysrzgjHNZd8961aLOrpeRRUGRKo67H) **Tags:** mitosocial **Resource Type:** MitoSocials --- ### [Indiana MitoSocial](https://www.mitoaction.org/resources/indiana-mitosocial/) **Published:** July 17, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Register](https://mitoaction-org.zoom.us/meeting/register/tZMkc-GgpzsuGtBNQJk4yoRGBfuCU72LDARN) **Resource Type:** MitoSocials --- ### [Expert Series: Traveling with an FAOD](https://www.mitoaction.org/resources/expert-series-traveling-with-an-faod/) **Published:** July 13, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction as Tasia Rechisky and Stephanie Harry lead us in a presentation and conversation surrounding traveling with an FAOD. They both offer unique perspectives, the adult patient perspective and parent perspective. They will seek to offer practical tips, while joining you conversation about how to navigate your own traveling adventure. **Original Airdate: June 4, 2023** https://youtu.be/CUb4VkmApTk **Tags:** expert series **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** FAOD Expert Series --- ### [Energy in Action Podcast Episode 88: Exercise for Mitochondrial Patients](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-88-exercise-for-mitochondrial-patients/) **Published:** July 12, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **ENERGY IN ACTION – EPISODE 088** Exercise for Mitochondrial Patients Dr. Nicole Voet joins us from the [Rehabilitation Department](https://www.radboudumc.nl/en/research/departments/rehabilitation) of [Radboud University Medical Center](https://www.radboudumc.nl/en/patient-care) in the Netherlands. We will discuss the importance of exercise for mitochondrial patients and what is best for our community based on her knowledge, experience and research. **EPISODE HIGHLIGHTS** **What is your advice for someone with mitochondrial disease when starting a new exercise routine?** When you start exercising, especially when you’re more severely affected by the disease, it’s best to start low and go slow. Within the rehabilitation center we have performed research on muscle fatigue because it’s one of the most disabling symptoms of mitochondrial disease. Mitochondria deliver energy and because they don’t perform well, when you start exercising lactate increases early, causing muscle pain and fatigue. It’s recommended to start exercising at only 30% of capacity, building slowly, and you’ll find you’re not as fatigued and you can increase the intensity of the exercise. Starting low, focus on building duration, then building intensity. **What is the best way to measure the appropriate duration and intensity of an exercise routine?** The Borg scale can be used to check your fatigue and exercise intensity. Reflect on how your exercise outcomes may interfere with daily activities. If you’re exercising at too high of an intensity and it limits your ability to perform typical tasks, you may need to adjust. Some muscle pain is okay, so long as it doesn’t occur for more than 24 hours after exercising. When you’re still able to talk while you’re exercising, the exercise isn’t too intense. **What is the expected outcome for someone with mitochondrial disease who doesn’t exercise?** When you have mitochondrial disease, your mitochondria are unhealthy and not very good at creating energy. Without exercise, the amount of healthy mitochondria decreases. With exercise, the amount of healthy mitochondria will increase. **Is one exercise more beneficial than another?** Strengthening exercises, such as exercises done with weights, have been shown to be less effective than aerobic. If you do strengthening exercises, it’s better to perform a higher number of repetitions and a lower or no weight. Aerobic exercise, including walking, running, cycling or swimming, are all very effective in neuromuscular and mitochondrial diseases. Aerobic exercise is the most effective. **LINKS & RESOURCES MENTIONED** [**Borg Rating Of Perceived Exertion**](https://www.physio-pedia.com/Borg_Rating_Of_Perceived_Exertion) [https://www.physio-pedia.com/Borg\_Rating\_Of\_Perceived\_Exertion](https://www.physio-pedia.com/Borg_Rating_Of_Perceived_Exertion) [**Nicole Voet on Spotify**](https://open.spotify.com/show/5POdR3POvv6Mm4JHS9pmln) https://open.spotify.com/show/5POdR3POvv6Mm4JHS9pmln **CONNECT WITH MITOACTION** [**Website**](https://www.mitoaction.org/) https://www.mitoaction.org/ [**Facebook**](https://www.facebook.com/mitoaction) [**Twitter**](https://twitter.com/mitoaction) https://twitter.com/mitoaction [**Instagram**](https://www.instagram.com/mitoaction/) [**LinkedIn**](https://www.linkedin.com/company/mitoaction) **Tags:** podcast **Resource Categories:** Exercise **Resource Type:** Podcasts --- ### [Energy in Action: Shades of Grief](https://www.mitoaction.org/resources/energy-in-action-shades-of-grief/) **Published:** July 5, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Tags:** podcast **Resource Categories:** Grief **Resource Type:** Podcasts --- ### [Expert Series: Molecular Bypass Deoxynucleoside Therapy for Thymidine Kinase 2 Deficiency (TK2d)Expert Series:](https://www.mitoaction.org/resources/expert-series-molecular-bypass-deoxynucleoside-therapy-for-thymidine-kinase-2-deficiency-tk2dexpert-series/) **Published:** May 3, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Thymidine kinase 2 deficiency (TK2d) is a rare mitochondrial disease due to mutations in the TK2 gene (*TK2*). Deficiency of TK2 enzyme causes depletion and multiple deletions of mitochondrial DNA that lead to progressive muscle weakness that begins in infancy through adulthood. Our studies of a mouse model of TK2d have indicated that deoxynucleosides can be effective in bypassing the enzymatic defect. Ongoing expanded access treatment and clinical trials with deoxynucleosides for TK2d are being conducted internationally. **Tags:** expert series **Resource Categories:** Understanding Mito **Resource Type:** Expert Series --- ### [2023 MitoAction Energy Walk & 5k](https://www.mitoaction.org/resources/2023-mitoaction-energy-walk-5k/) **Published:** June 27, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Learn More or Register Today](https://give.mitoaction.org/event/2023-mitoaction-energy-walk-and-5k-syracuse/e491556) **Tags:** Energy Walk, Syracuse --- ### [Parents as Rare: Episode 86](https://www.mitoaction.org/resources/parents-as-rare-episode-86/) **Published:** June 21, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **PARENTS AS RARE – EPISODE 086** **Travel Tips from the PAR Community with Lisa Weinberger** Lisa Weinberger and host, Adam Johnson, share tips and tricks for summer travel, hitting the road, or taking to the skies when you have unique health situations and circumstances to consider. **EPISODE HIGHLIGHTS** **Preparation** - Plan an itinerary for each day that includes all travel details for easy reference, preferably in a way that can be shared among other traveling family or friends. - Give yourself plenty of time in advance of your planned travel dates to outline and plan the trip details. - When building your itinerary, build in time for rest or any other needs you may have. - Get ahead at home before your trip to avoid having things to do when you get home. - Check the accessibility of places you’ll be visiting. - Make doctor’s appointments in advance of your trip and ensure you have all needed medications filled or adjusted. Order prescriptions well in advance of your travel dates. - Book sufficient accommodations in case you can’t participate in activity or need to remain at the hotel. - Locate local grocery stores, general retailers and pharmacies where you’ll be staying and see what delivery options are available. **Organizing Medical Information** - Have a list of your medications, medical conditions, allergies and emergency contacts printed and laminated, readily available in one convenient location. - Include your providers in planning to establish healthcare proxies. - Compile your healthcare providers’ contact information. - Create an audio file on your phone that explains your disease diagnosis and protocols in case you’re unable to speak in an emergency. **Packing** - Start packing in advance of your trip so you can take your time and pace yourself. - Only pack what you need to avoid checking bags with the airline, if possible. - Pack a water bottle so you stay hydrated when you’re traveling. If you’re traveling somewhere hot, also bring a cooling fan or cooling towel. - Bring a book or ebook device to catch up on your reading while you’re traveling. This is also a good time to catch up on your favorite podcasts. - Don’t forget headphones for sleeping, travel ambiance and listening to music, podcasts or audio books. - If there are last minute items you might forget, put the items at the door or create a reminder for yourself. - If you have one, bring your handicap placard with you. **Equipment and Supplies** - If needed, look for a scooter rental in the area you’re traveling to. Some companies will deliver to your hotel room in advance. - Wear an emergency medical band, especially if you’re traveling alone. - Pack extra medication and medical supplies when traveling just in case you’re delayed returning home. **Airline Travel** - Each airport and airline may have differing rules about accommodations you may need, so call ahead and ask if you can’t find related policies on their website. - Many airports and airline companies have accessibility service teams to help you with your travel, so when you call with questions, request those resources. - If there are ways to speed up travel, international or domestic, opt to do it. Use pre-check to move through airline security quicker. If you’re renting a car, sign up for contactless pick-up so you can locate the car and be on your way quickly. - If you’re traveling with medical equipment, ask security to hand-check it to avoid damage. **Car Travel** - Pack and bring light meals, snacks and a cooler with beverages. Use grocery delivery services to get everything you need to pack. - Break up your drive and share driving responsibilities, if possible. - Take advantage of stops, planned or otherwise, to get out of the car, move, take photos and enjoy the experience. **Post Travel** - Don’t make big plans for after you return home so you can rest and recover. - **Schedule physical therapy, massage therapy or chiropractor appointments for when you return home to help with stretching and loosening up muscles.** **RESOURCES MENTIONED** [**Parents As Rare – Episode 52**](https://www.mitoaction.org/resources/lisa-weinberger-be-your-own-advocate-listen-to-your-body-take-control-of-your-health-ask-questions/) https://www.mitoaction.org/resources/lisa-weinberger-be-your-own-advocate-listen-to-your-body-take-control-of-your-health-ask-questions/ [**Parents As Rare – Episode 65**](https://www.mitoaction.org/resources/tara-zier-stiff-person-syndrome-research-foundation-and-finding-your-purpose/) https://www.mitoaction.org/resources/tara-zier-stiff-person-syndrome-research-foundation-and-finding-your-purpose/ [**Parents As Rare – Episode 43**](https://www.mitoaction.org/resources/par_davidross/) https://www.mitoaction.org/resources/par_davidross/ [**Parents As Rare – Episode 73**](https://www.mitoaction.org/resources/challenging-the-status-quo/) https://www.mitoaction.org/resources/challenging-the-status-quo/ [**Scootaround**](https://scootaround.com/en) [**ScooterBug**](https://www.scooterbug.com/) https://www.scooterbug.com/ [**Once Upon a Gene Podcast**](https://effieparks.com/podcast) [**TSA Cares**](https://www.tsa.gov/travel/passenger-support) **FOLLOW ADAM JOHNSON** [**Twitter @RareDiseaseDad**](https://twitter.com/rarediseasedad) https://twitter.com/rarediseasedad [**Instagram @RareDiseaseDad**](https://www.instagram.com/rarediseasedad/) https://www.instagram.com/rarediseasedad/ [**LinkedIn**](https://www.linkedin.com/in/adam-johnson-8a1473125) https://www.linkedin.com/in/adam-johnson-8a1473125 **CONNECT WITH MITOACTION** [**Website**](https://www.mitoaction.org/) https://www.mitoaction.org/ [**Facebook**](https://www.facebook.com/mitoaction) https://www.facebook.com/mitoaction [**Twitter**](https://twitter.com/mitoaction) https://twitter.com/mitoaction [**Instagram**](https://www.instagram.com/mitoaction/) https://www.instagram.com/mitoaction/ [**LinkedIn**](https://www.linkedin.com/company/mitoaction) https://www.linkedin.com/company/mitoaction **Tags:** energy in action, mito, parents as rare, podcast **Resource Categories:** Day-to-Day with Mito **Resource Type:** Podcasts --- ### [International Metabolic Conference](https://www.mitoaction.org/resources/international-metabolic-conference/) **Published:** June 9, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") [Register](https://give.mitoaction.org/event/2023-international-metabolic-conference/e451564) **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC, IMC 2023 --- ### [Energy in Action: Minds in Motion](https://www.mitoaction.org/resources/energy-in-action-minds-in-motion/) **Published:** June 7, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Tags:** energy in action, podcast **Resource Type:** Podcasts --- ### [Retinopathy: Why LCHADD & Eye Health - Dr. Tiffany Devine and Dr. Melanie Gillingham](https://www.mitoaction.org/resources/retinopathy-why-lchadd-eye-health-dr-tiffany-devine-and-dr-melanie-gillingham/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC, IMC 2021 --- ### [Our Space: A space for young adults to connect and network with Mito and FAODs](https://www.mitoaction.org/resources/our-space-a-space-for-young-adults-to-connect-and-network-with-mito-and-faods/) **Published:** June 5, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfu2hrD8uE9RRKTw6mAtDTvC1HQzZOoKe) **Resource Type:** Support Calls --- ### [Parents As Rare: Chronically Simple & Simply Unbreakable](https://www.mitoaction.org/resources/par-chronically-simple/) **Published:** December 15, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **PARENTS AS RARE – EPISODE 039** Chronically Simple & Simply Unbreakable – Kristy Dickinson Kristy Dickinson is a wife and mother of three, navigating life with multiple rare diseases. She’s the founder of Chronically Simple, a digital health app that empowers patients and allows them to take control over their healthcare. She writes a blog and also co-hosts a podcast called Simply Unbreakable. ### EPISODE HIGHLIGHTS **Can you share a bit about yourself?** I am a rare disease patient with Ehlers-Danlos Syndrome (EDS), a genetic connective tissue disorder. I also have comorbidities that accompany EDS including Mast Cell Activation Syndrome (MCAS), Medullary Sponge Kidney (MSK), Ankylosing spondylitis (AS), and an esophageal disorder that is still being diagnosed. I have been married to my husband Simon for over 20 years and I’m a mother to three children who are 9, 12 and 14 years old. **What was your diagnosis journey like as it relates to your family?** My health deteriorated with each pregnancy. When I was going through it, the doctors didn’t know what was wrong. When I was struggling without a diagnosis and then after I was first diagnosed, I had to adjust the narrative in my head around my hopes and dreams, what I thought my family would be like, how I would parent and show up as a wife. I went through a period of mourning and struggled with it. **How are you using your own childhood experience to support your kids through their experience?** My mom was an incredibly strong and stubborn woman and my dad often shares that we are very similar, which I take as a compliment. I think you have to be stubborn to live with chronic illness every day. My parents worked really hard to give my sister and I as normal a childhood as possible. I never wanted my kids to have fear of my prognosis or feel like their time with me is limited. So I fight, I work every day to be present with them and keep my focus and priorities where they should be. **How do you help your kids cope?** I’m very honest with them. I struggle to know how much information I should give them and how to have those conversations because I don’t want them to worry. We have very honest conversations about how they feel. They also each have a therapist they can talk to as they want. ### CONNECT WITH KRISTY [**Twitter @simplykristyd**](https://twitter.com/simplykristyd) [**Instagram @chronicallysimple**](https://www.instagram.com/chronically_simple/?hl=en) [**Facebook @chronicallysimplelife**](https://www.facebook.com/chronicallysimplelife/) ### RESOURCES MENTIONED [**Chronically Simple Blog**](https://www.chronicallysimple.com/blog) [**Chronically Simple Website**](https://www.chronicallysimple.com/) [**Simply Unbreakable Podcast**](https://www.chronicallysimple.com/podcast) **Resource Type:** Podcasts --- ### [Traveling with an FAOD](https://www.mitoaction.org/resources/traveling-with-an-faod/) **Published:** May 25, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction as Tasia Rechisky and Stephanie Harry lead us in a presentation and conversation surrounding traveling with an FAOD. They both offer unique perspectives, the adult patient perspective and parent perspective! They will seek to offer practical tips, while joining you conversation about how to navigate your own traveling adventure! [Register](https://mitoaction-org.zoom.us/meeting/register/tZ0pf-2rqDwjGdANmTRL-tchW53F-CwmIG8b#/registration) --- ### [Energy in Action: Akron Children's Hospital - Meet the Mito Clinic Team](https://www.mitoaction.org/resources/energy-in-action-episode-81/) **Published:** May 25, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **ENERGY IN ACTION – EPISODE 081** Akron Children’s Hospital – Meet the Mito Clinic Team We are joined by Dr. Iam Rossman, Dr. Stephen Steiner, Dr. Abdu Alali and Nurse Coordinator, Kim Jaaeger— all clinic members from the Akron Children’s Hospital Mitochondrial Center. **EPISODE HIGHLIGHTS** **What is the process for a patient to make an appointment?** We accept physician referrals and self-referrals and we see patients locally and regionally. Once a patient is accepted into the program, an authorization specialist will check benefit coverage and before the initial appointment, we have an internal discussion to formulate a care plan. A patient can expect the initial appointment to take place in as little as two months. **What pre-qualifications are required to be accepted?** We don’t require a confirmed diagnosis and we also see patients who are highly suspected to have mitochondrial disorder based on clinical history, laboratory findings and family history. **What is a patient’s first visit like and how can they prepare?** Just like most new patient evaluations, it’s helpful to come with any data and imaging they have. Before the appointment, we will obtain records from other providers to preview as a team. Patients can expect a pretty long visit that doesn’t feel rushed so we can get to know them and their medical history. Patients can make a list in advance of any questions they have along with their goals for the visit. **Can you talk about the North American Mitochondrial Disease Consortium Patient Registry and Biorepository (NAMDC) initiative and how patients can get involved?** The overarching goal is to find out more about our patients in order to help them and also future patients. One of the ways we’re doing that is through obtaining samples and banking them in the repository so that researchers have access to perform high-quality research. A patient must have an established genetic diagnosis to participate. **How does a bio bank facilitate research and how are samples shared?** We collect samples with the goal to have clinical information tied to DNA available to then do further research and look at a bigger group of patients. Samples aren’t associated with a patient’s name. Instead they’re de-identified, which allows a patient to contribute to our global understanding of a disorder and remain anonymous. **LINKS & RESOURCES MENTIONED** [**North American Mitochondrial Disease Consortium Patient Registry and Biorepository**](https://www.clinicaltrials.gov/ct2/show/NCT01694940) [**Active and Enrolling Trials at Akron Children’s Hospital**](https://www.clinicaltrials.gov/ct2/results?locn=Akron+Children%27s+Hospital&Search=Apply&recrs=b&recrs=a&recrs=f&recrs=d&age_v=&gndr=&type=&rslt=) [https://www.clinicaltrials.gov/ct2/results?locn=Akron+Children%27s+Hospital&Search=Apply&recrs=b&recrs=a&recrs=f&recrs=d&age\_v=&gndr=&type=&rslt=](https://www.clinicaltrials.gov/ct2/results?locn=Akron+Children%27s+Hospital&Search=Apply&recrs=b&recrs=a&recrs=f&recrs=d&age_v=&gndr=&type=&rslt=) **CONNECT WITH AKRON CHILDREN’S HOSPITAL** [**Akron Children’s Hospital, Mitochondrial Center Website**](https://www.akronchildrens.org/departments/Mitochondrial-Center.html) **Email Mitochondrial Center** mito@akronchildrens.org **Phone (330) 543-6486** **CONNECT WITH MITOACTION** [**Website**](https://www.mitoaction.org/) https://www.mitoaction.org/ [**Facebook**](https://www.facebook.com/mitoaction) [**Twitter**](https://twitter.com/mitoaction) https://twitter.com/mitoaction [**Instagram**](https://www.instagram.com/mitoaction/) [**LinkedIn**](https://www.linkedin.com/company/mitoaction) **Resource Type:** Podcasts --- ### [PARENTS AS RARE - EPISODE 83](https://www.mitoaction.org/resources/parents-as-rare-episode-82/) **Published:** May 17, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **A Painful Identity – Renuka Dhinakaran** Renuka Dhinakaran is an international labor lawyer, mom, chronic illness patient and an incredible patient advocate. **EPISODE HIGHLIGHTS** **Will you start with sharing about yourself?** I’m 38 years old, married and living in the Netherlands, originally from India. I have a son who is 10 years old and I’m an international lawyer with my own law practice. I had a wonderful life until 4 years ago when chronic illness became the new normal for me. **Where did your chronic condition journey start?** I was a premature baby and I was sick a lot as a child. I remember being in pain quite often and as a teenager was diagnosed with PCOS and endometriosis. I was later diagnosed with hypermobile Ehlers-Danlos syndrome. The turning point was my pregnancy when I suffered with back pain. After I gave birth, I was told I had degenerative disc disease and a pelvic dislocation. I went on to develop anxiety, hypertension, asthma, gallstones, allergies, migraines and arthritis. **What’s your advice for parenting with chronic illness?** I learned the hard way to erase guilt from my vocabulary. I have also learned to pick my lane. I’m in charge of overseeing my son’s health and academics. His father handles logistics, sports and activities. The best suggestion I have for parents with chronic illness is to pick one lane where you can contribute, even on your bad days, that no one else can do. Acceptance and commitment therapy has also been helpful to accept the way things are, figuring out a plan and committing to it. **LINKS & RESOURCES MENTIONED** [**Renuka Dhinakaran on Twitter**](https://twitter.com/renudhinakaran) https://twitter.com/renudhinakaran [**A Painful Identity**](https://www.apainfulidentity.com/) **FOLLOW ADAM JOHNSON** [**Twitter @RareDiseaseDad**](https://twitter.com/rarediseasedad) https://twitter.com/rarediseasedad [**Instagram @RareDiseaseDad**](https://www.instagram.com/rarediseasedad/) [**LinkedIn**](https://www.linkedin.com/in/adam-johnson-8a1473125) **CONNECT WITH MITOACTION** [**Website**](https://www.mitoaction.org/) https://www.mitoaction.org/ [**Facebook**](https://www.facebook.com/mitoaction) [**Twitter**](https://twitter.com/mitoaction) https://twitter.com/mitoaction [**Instagram**](https://www.instagram.com/mitoaction/) [**LinkedIn**](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, mito, parents as rare, podcast **Resource Categories:** Patient Stories **Resource Type:** Podcasts --- ### [Energy in Action Podcast Episode 80: Jireh Somera - Fabry Fighter](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-80-jireh-somera-fabry-fighter/) **Published:** April 27, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **PARENTS AS RARE – EPISODE 080** **Jireh Somera – Fabry Fighter** Jireh Somera is a husband, father and Fabry fighter. While our rare disease journeys have been different, we share a lot of similarities and it’s nice to have someone to relate to. In this episode, Jireh shares some of his journey with us, giving us insight into staying present, shifting perspective and trusting the road ahead, knowing that it’s not what he *can’t* do, but what he *can* do. **EPISODE HIGHLIGHTS** **What was life like leading up to your diagnosis?** In 2020, my son was born and I was a new dad. I took the opportunity to work at home and embraced my time with him and my wife. My career was where I wanted it to be and we had just bought a home. **What were your first symptoms?** I didn’t know I had symptoms of Fabry disease– I just thought I had normal headaches or elevated blood pressure. I went to work with a headache, assuming it was allergies, had coffee, took a pain reliever and by the evening the headache came back. That night, I yelled in my sleep and my wife woke up to find me unresponsive. A CT scan revealed that I had a brain bleed, I was admitted to the ICU and a stint was implanted. Through that procedure, doctors discovered abnormal blood vessels in my neck, which triggered follow-up appointments, meeting with a geneticist and receiving a diagnosis. **What was your experience after being diagnosed when living up to your expectations as a dad and husband were so important to you before?** It was a struggle in the beginning and still presents opportunities for me to work on today. I put a lot of emphasis on what a good father and husband looks like and once I realized those were just my expectations and not who I needed to be, which helped have an overall change in mindset. My wife, family and friends also play a big role in my continued change of mindset. **How have you adapted the way you interact with your son?** Since he’s little, most activities we do are adaptable. With the mobility issues that resulted from my strokes, I have found ways to play, sitting in a chair so I don’t have to stand. I appreciate the family support we have with caring for my son. They help him with the things I can’t and I stay focused on what I can still do for him. Even though he’s two years old, it’s been helpful to be honest about the boundaries and what is and isn’t okay to do with me. **LINKS & RESOURCES MENTIONED** [**Jireh on Instagram**](https://www.instagram.com/hello_my_name_is_jireh/) [https://www.instagram.com/hello\_my\_name\_is\_jireh/](https://www.instagram.com/hello_my_name_is_jireh/) [**Rare Is Everywhere book by Deborah R. Katz**](https://bookshop.org/p/books/rare-is-everywhere-deborah-r-katz/14471617) [**Fabry Support & Information Group**](https://fabry.org/) https://fabry.org/ [**National Fabry Disease Foundation**](https://www.fabrydisease.org/) [**AllStripes**](https://www.allstripes.com/) [**Global Genes**](https://globalgenes.org/) **FOLLOW ADAM JOHNSON** [**Twitter @RareDiseaseDad**](https://twitter.com/rarediseasedad) https://twitter.com/rarediseasedad [**Instagram @RareDiseaseDad**](https://www.instagram.com/rarediseasedad/) [**LinkedIn**](https://www.linkedin.com/in/adam-johnson-8a1473125) **CONNECT WITH MITOACTION** [**Website**](https://www.mitoaction.org/) https://www.mitoaction.org/ [**Facebook**](https://www.facebook.com/mitoaction) [**Twitter**](https://twitter.com/mitoaction) https://twitter.com/mitoaction [**Instagram**](https://www.instagram.com/mitoaction/) [**LinkedIn**](https://www.linkedin.com/company/mitoaction) **Resource Categories:** Patient Stories **Resource Type:** Podcasts --- ### [Monica and John Cline - Forever Gift of Compassion - Live Like JoJo](https://www.mitoaction.org/resources/monica-and-john-cline-forever-gift-of-compassion-live-like-jojo/) **Published:** April 20, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **Resource Categories:** Day-to-Day with Mito, Patient Stories **Resource Type:** Podcasts --- ### [Marcy Young - Living with CPEO](https://www.mitoaction.org/resources/marcy-young-living-with-cpeo/) **Published:** April 14, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **ENERGY IN ACTION – EPISODE 078** Marcy Young – Living with CPEO Marcie Young is a young adult who is impacted by CPEO and lives near Cleveland, Ohio. **EPISODE HIGHLIGHTS** **Can you share about your diagnosis journey?** My whole life, my mom seemed off and it continued to get worse as I got older. She was diagnosed with muscular dystrophy, but I felt like more digging needed to be done. When I graduated college, my mom had suffered a lot of physical setbacks, so I met with a neurologist at the Cleveland Clinic and described what my mom was experiencing. I was diagnosed with CPEO and my neurologist worked with my mom’s doctor to also match her bloodwork. **As your mom progressed, what did that look like and what were some of the symptoms?** My mom had a pretty complex case, her eyes didn’t move at all- they were completely stationary. She was very fatigued and had difficulty walking. **What was that like for you, knowing the challenges that your mom was facing, and knowing what you would potentially also experience?** It is very hard to not take to heart what a difficult time my mom had, and I was very irritable in my twenties. I had a lot of fear because I had a front seat to what could potentially happen to me. We had beautiful moments in our last couple of years together, but we had some really tough ones. **How do you manage a marriage given the impact that having a rare disease has on a partner?** I’m very lucky to have such an amazing husband. We’ve made some modifications around our house to help me live more independently, and a lot of those have been his ideas. He’s not just my husband, he’s my best friend and my teammate in this, and he was with me as my mom had her largest setbacks. **Did your diagnosis play a role in your decision to have kids?** We met with a specialist who talked to us about an opportunity to take my embryos to a lab and ensure that my child would not have CPEO. We talked a lot about it and we chose not to go in that direction and to have children naturally. Fortunately I was able to carry a child two times. My kids are so young, they have not yet been tested. **Tell us a little bit about what your experience has been with clinical trials?** It’s not a question of whether I will or won’t participate. The first trial was a shot every day for 14 months until the trial ended, and it was painful. The trial that I’m currently on is three pills a day, so it’s not as intrusive. **What would you say to a patient who is hesitant about participating in a clinical?** I would want people to think about it from the opposite direction. If the generation before us were to have had the opportunities to be in these trials, and if they didn’t take advantage of it and we’re suffering because of a lack of interest from them, let’s try to not create that situation for the generation after us. The trials that we’re doing right now, depending on your age and symptom severity, could still very well help us. **CONNECT WITH MITOACTION** [**Website**](https://www.mitoaction.org/) > [Homepage](https://www.mitoaction.org/) [**Facebook**](https://www.facebook.com/mitoaction) [**Twitter**](https://twitter.com/mitoaction) [Tweets by MitoAction](https://twitter.com/MitoAction?ref_src=twsrc%5Etfw) [**Instagram**](https://www.instagram.com/mitoaction/) [**LinkedIn**](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, mito, mitochondria, podcast **Resource Categories:** Day-to-Day with Mito, Patient Stories **Resource Type:** Podcasts --- ### [MitoSocial](https://www.mitoaction.org/resources/mitosocial/) **Published:** March 2, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join us for a virtual Patient and Family Social for Louisiana, Arkansas, Mississippi, Alabama and surrounding areas on March 8th at 6:30pm CST. If you geographically located in one of these areas, please register for a chance to connect with local patients and families. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwrc-Crrj0vG9OgVxcMW4bJePsQ7cRJARf3) **Resource Categories:** Caregivers & Family, Patient Stories **Resource Type:** MitoSocials --- ### [Men's Support Call](https://www.mitoaction.org/resources/mens-support-call/) **Published:** March 2, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join us for a support call just for the men in the mitochondrial disease community! Connect with other men and discuss your personal victories and challenges with those who can relate best. [Register](https://mitoaction-org.zoom.us/meeting/register/tZMucumvqDkvGdUfRbZeX-4ERtwp7DmLfkfJ) **Resource Categories:** Day-to-Day with Mito **Resource Type:** Support Calls --- ### [LC-Fatty Acid Oxidation Disorders: Recent Updates on the REN001 Study](https://www.mitoaction.org/resources/lc-fatty-acid-oxidation-disorders-recent-updates-on-the-ren001-study/) **Published:** August 12, 2022 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") There was much discussion about current research in FAODs at the 2022 International Metabolic conference. Reneo Pharmaceuticals recently released positive results from the REN001 Phase1b LC-FAOD Study. Dr. Alex Dorenbaum, Chief Medical Officer at Reneo Pharmaceuticals will provide background about the Reneo LC-FAOD clinical study and answer questions. https://youtu.be/JXlFfRxxo-A **Resource Categories:** Clinical Trials, Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** Expert Series, FAOD Expert Series --- ### [Ultragenyx's LC-FAOD Odyssey Study: From Patient Experience to Patient Empowerment](https://www.mitoaction.org/resources/odyssey/) **Published:** May 20, 2021 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction, Eliza Kruger and Kristin Voorhees from [Ultragenyx Pharmaceutical](https://www.ultragenyx.com/) on Friday, May 21, 2021 at 12:00pm EST for our monthly expert series presentation! On this webinar, Ultragenyx representatives will discuss how insights and feedback from people living with LC-FAOD shaped the design of a new study: LC-FAOD Odyssey. This study uses digital technology developed by PicnicHealth to collate and organize medical records, allowing people living with LC-FAOD to contribute their anonymized data to advance research. Participants will learn about the study goals and how the community can participate, as well as see a demo of the technology and the opportunities it offers to patients and caregivers. \**This webinar is intended for U.S. members of the MitoAction community\** **Resource Categories:** Day-to-Day with Mito, Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** Expert Series, FAOD Expert Series --- ### [Introducing the Ultragenyx LC-FAOD Disease Monitoring Programs: Our Commitment to Advancing LC-FAOD Research Globally](https://www.mitoaction.org/resources/dmp/) **Published:** July 8, 2021 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction, Laura Pisani-Betancourt and Kristin Voorhees from [Ultragenyx Pharmaceutical](https://www.ultragenyx.com/) on Friday, July 9th, 2021 at 12:00pm EST for our monthly expert series presentation! On this webinar, Ultragenyx will discuss the development of its LC-FAOD Disease Monitoring Program (DMP), which includes both an in-clinic study and an online study that are expected to launch in 2021. Participants will learn about the studies, including how insights from the LC-FAOD community have informed the DMP’s research goals, how the DMP aims to change the future of LC-FAOD research and disease management, and Ultragenyx’s plans to launch the DMP. \**This webinar is intended for U.S. members of the MitoAction community\** **Tags:** US Only **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** Expert Series, FAOD Expert Series --- ### [FAOD 101 with Dr. Jerry Vockley](https://www.mitoaction.org/resources/faod-101-with-dr-jerry-vockley/) **Published:** January 18, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Jerry Vockley (Children’s Hospital of Pittsburgh, INFORM) takes us through an introduction to fatty acid oxidation disorders to get you ready for this week’s MitoAction International Metabolic Conference. https://youtu.be/yubPSlORl28 **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC, IMC 2021 --- ### [FAOD Diagnosis 101 - Dr. Georgianne Arnold](https://www.mitoaction.org/resources/faod-diagnosis-101-dr-georgianne-arnold/) **Published:** January 18, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Get ready for MitoAction’s 2nd Annual International Metabolic Conference with a quick review of FAOD diagnosis. https://youtu.be/WuVKHbkGk54 **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC, IMC 2021 --- ### [A Hypothesis That Wouldn't Go Away: Does Lipotoxicity Contribute to Myopathy in FAODs? - Sean Adams](https://www.mitoaction.org/resources/a-hypothesis-that-wouldnt-go-away-does-lipotoxicity-contribute-to-myopathy-in-faods-sean-adams/) **Published:** January 18, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/OZyn-zk3_So **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC, IMC 2021 --- ### [Exercise Physiology & FAODs - Dr. Melanie Gillingham](https://www.mitoaction.org/resources/exercise-physiology-faods-dr-melanie-gillingham/) **Published:** January 18, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/vbU3Ss6YGSk **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** FAOD Expert Series, IMC, IMC 2021 --- ### [Nutrient-Dense Meal Planning for FAOD- Mary Sowa, MS, RD, CSP & Dr. Sandy Van Calcar, PhD, RD, LD](https://www.mitoaction.org/resources/nutrient-dense-meal-planning-for-faod-mary-sowa-ms-rd-csp-dr-sandy-van-calcar-phd-rd-ld/) **Published:** January 18, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/XDK5NLmPkmY **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC, IMC 2021 --- ### [Understanding the Effect of FAODs on the Liver and Immune System](https://www.mitoaction.org/resources/understanding-the-effect-of-faods-on-the-liver-and-immune-system/) **Published:** January 18, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Eric Goetzman discusses the impact of FAOD on the liver and immune system. https://youtu.be/TDlk6g2XOcg **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC, IMC 2022 --- ### [How to Talk the Talk while you Walk the Walk: How to explain FAODs](https://www.mitoaction.org/resources/how-to-talk-the-talk-while-you-walk-the-walk-how-to-explain-faods/) **Published:** January 18, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") How do you explain to professionals, family members or others what is an FAOD? Dr. Mark Korson helps you explain your diagnosis while also teaching you how to advocate for the best care when a medical professional isn’t familiar with FAODs. https://youtu.be/AEXgmIsEXDM **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC, IMC 2022 --- ### [Challenging the Status Quo](https://www.mitoaction.org/resources/challenging-the-status-quo/) **Published:** March 1, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **PARENTS AS RARE – EPISODE 073** **Challenging The Status Quo – Robin Powers** Robin Powers is a mother who has a rare disease and she’s raising a son who has a rare disease. She’s a single parent going to school, yet she still manages to knock out important advocacy-related work and projects, all while supporting others. We discuss navigating parenting as parents with rare diseases. **EPISODE HIGHLIGHTS** **Can you share what your connection to Ehlers-Danlos syndrome (EDS) is?** As a teen, I dislocated my knee in my sleep. I did my research and proposed to my physician that I had EDS. I saw a geneticist to get diagnosed and subsequently found support in the rare community. **What is the importance of having perseverance through the diagnostic odyssey?** I like to challenge the status quo because if you don’t do it, no one else is going to do it after you. I’ve seen my son stand up for himself and advocate for himself many times and it wasn’t because I taught him to do it– he saw me doing it. I personally took the statistics and changed the odds by changing the factors and becoming more perseverant, not taking n for an answer, taking every opportunity I could find, and never being too afraid to ask. I knew that would turn my hope into action and would make things very possible. **What is your experience parenting while having a rare disease?** It’s challenging to not have a caregiver and need a caregiver and then care for someone else and be their rare champion of hope. It’s taxing and emotional because I always feel like I’m failing and I feel guilt when I need to rest or something that takes away from my son and our time together. I worry about him in the future and hope that what I’m adding to his life isn’t going to be a deficit. **How do you manage being a parent with a rare disease and parenting a child with a rare disease?** I’m a single parent and I am the only raregiver. When managing our conditions, I always address any concerns for him first because he’s depending on me. Even though I should put my oxygen mask on first, I know I can probably hold my breath for a little while. I remember suffering at his age and not having help and I won’t have the same for my son. So I hold my breath, take care of my son and do the best I can to take care of myself. **What tips do you have for parents in a similar situation, having a rare disease and parenting a child with rare disease?** I came up with the terms rareabilty and rareativity. Rareativity is accepting what you can do for the day. If you have ten things to do, but you can only do three, postpone the remaining seven things for the next day. I accept that I can only do what I can do. Rareability is the idea of bracing the things that you’re good at and fostering the skills you’re good at. I use mindfulness to stay ahead in the game, to be mindful of the fact that I shouldn’t be hard on myself for something and that I’m doing the best I can. Mindfulness of reality makes me feel lucky to have life, despite how hard it is. **LINKS & RESOURCES MENTIONED** [**The Disorder Channel**](https://www.thedisordercollection.com/) [**Beyond Limits: Rare Men Talking Mental Health**](https://www.youtube.com/watch?v=BmQKPkT3kvs) https://www.youtube.com/watch?v=BmQKPkT3kvs [**Parents as Rare: Cowden Syndrome and Male Mental Health – David Ross**](https://www.mitoaction.org/resources/par_davidross/) https://www.mitoaction.org/resources/par_davidross/ [**Parents as Rare Past Episodes**](https://rarediseasedad.com/parents-as-rare-my-pod) [**Angel Aid**](https://www.angelaidcares.org/) **CONNECT WITH ROBIN** [**Twitter**](https://twitter.com/Robin_Lexi) https://twitter.com/Robin_Lexi [**Linkedin**](https://www.linkedin.com/in/robinapowers/) **FOLLOW ADAM JOHNSON** [**Twitter @RareDiseaseDad**](https://twitter.com/rarediseasedad) https://twitter.com/rarediseasedad [**Instagram @RareDiseaseDad**](https://www.instagram.com/rarediseasedad/) [**LinkedIn**](https://www.linkedin.com/in/adam-johnson-8a1473125) **CONNECT WITH MITOACTION** [**Website**](https://www.mitoaction.org/) https://www.mitoaction.org/ [**Facebook**](https://www.facebook.com/mitoaction) [**Twitter**](https://twitter.com/mitoaction) https://twitter.com/mitoaction [**Instagram**](https://www.instagram.com/mitoaction/) [**LinkedIn**](https://www.linkedin.com/company/mitoaction) **Tags:** advocacy, mito parent, parenting, parents as rare, podcast **Resource Categories:** Advocacy, Caregivers & Family, Day-to-Day with Mito, Patient Stories **Resource Type:** Podcasts --- ### [The Navigation Project](https://www.mitoaction.org/resources/the-navigation-project/) **Published:** March 1, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **ENERGY IN ACTION – EPISODE 072** The Navigation Project Lauren Kopsick and Ivy Braun are the founders of the Healthcare Navigation Project, formerly known as Parent It Forward. This is the first independent public healthcare literacy and life care project for all youth as they transition to adult care. They share their advice for transitional planning after pediatric care. **EPISODE HIGHLIGHTS** **Can you share what The Healthcare Navigation Project does?** We consist of five modules which includes basic healthcare navigation, navigating specialty healthcare, advocating for mental health, let’s talk pharmacy and customer care and the future of healthcare. The program starts with basic healthcare navigation– learning the 27 keywords you need to know and will teach you about developments and changes so patients and families are informed and they can share information with their doctors. This module also teaches patients how to pick a physician, about body language and telephone skills. A script is provided to call a physician’s office so they know what questions they need to ask. In another module, we practice calling pharmacists and learning about medications and how to get them. In another module, we call 211, which is the keeper of every service for a state. **What are the five guiding principles for advocating?** 1. If it doesn’t make sense to you, it probably doesn’t make sense and you shouldn’t stop until you can make sense of it. 2. People are people– good, bad and indifferent, and you don’t have to engage with someone who makes you feel uncomfortable. 3. Research, research and more research. 4. Never give up anything once you have it. 5. The Patient Centered Medical Home. **Have you presented to rare disease groups?** We are working with the Taproot Foundation which acts as a recruiting firm for nonprofits. They’re helping us with a program that will be in January 2023. **What is the importance of sharing what we know with others to build their healthcare knowledge and move expectations forward?** Patients and users of healthcare are the customers of the healthcare system, so if you’re unhappy with a service, you have to push it forward. Learn the system and how to push forward and ask about other options. Keep pushing boundaries. **LINKS & RESOURCES MENTIONED** [**The Healthcare Navigation Project**](https://thehealthcarenavigationproject.org/) [**National Committee of Quality Assurance**](https://www.ncqa.org/) https://www.ncqa.org/ [**Got Transition**](https://gottransition.org/) [**Taproot Foundation**](https://taprootfoundation.org/) https://taprootfoundation.org/ **CONNECT WITH MITOACTION** [**Website**](https://www.mitoaction.org/) https://www.mitoaction.org/ [**Facebook**](https://www.facebook.com/mitoaction) [**Twitter**](https://twitter.com/mitoaction) https://twitter.com/mitoaction [**Instagram**](https://www.instagram.com/mitoaction/) [**LinkedIn**](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, podcast, transition planning **Resource Categories:** Transitioning from Child to Adult Care **Resource Type:** Podcasts --- ### [Good Grief and the Holidays](https://www.mitoaction.org/resources/good-grief-and-the-holidays/) **Published:** March 1, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **ENERGY IN ACTION – EPISODE 071** Lisa Athan is the Founder and Executive Director of [Griefspeaks](http://www.griefspeaks.com/). She shares tips and strategies for navigating grief through the holidays and beyond. **EPISODE HIGHLIGHTS** **What tools can help someone to get through holidays without someone they’ve lost?** Have an exit strategy at gatherings and know it’s okay to decline invitations to holiday events. Ensure you have options for yourself and give yourself permission to exercise your options. Record voice recordings to yourself saying whatever it is you need to hear in difficult moments. Think ahead to protect yourself by practicing lines to say to people. This will help you navigate being approached with questions or small talk when you’re not in a place to discuss your grief. Make a list of the people, places and activities that make you feel a sense of strength. **During the holidays, in what ways can people share memories and honor someone they’ve lost?** It’s important to talk about the person you’ve lost and to let friends and family know it’s okay to say their name and share stories. You can put a memory stocking or wreath up for the person and have friends and family share memories when they visit. Everyone processes grief differently and when it comes to family, it’s important to talk about that. **CONNECT WITH MITOACTION** [**Website**](https://www.mitoaction.org/) https://www.mitoaction.org/ [**Facebook**](https://www.facebook.com/mitoaction) [**Twitter**](https://twitter.com/mitoaction) https://twitter.com/mitoaction [**Instagram**](https://www.instagram.com/mitoaction/) [**LinkedIn**](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, grief, grief and mito, podcast **Resource Categories:** Grief **Resource Type:** Podcasts --- ### [EPISODE 033: Parents as Rare - Emma & Spencer: The Heart of Parents as Rare](https://www.mitoaction.org/resources/heart-of-par/) **Published:** October 20, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **PARENTS AS RARE – EPISODE 033** Emma & Spencer – The Heart of Parents As Rare As a dad with a rare disease, I often think about the ways my children have been impacted. My children, 11 year old Emma and 5 year old Spencer, share their thoughts and feelings on this inaugural episode. ### EPISODE HIGHLIGHTS **What do you remember about my diagnosis?** I knew it was a muscle disease and that’s all anyone really knew. I don’t remember the day you told me specifically. **Do you recall the first time you came to me to talk about my rare disease?** It was when I was doing a school project on the human body and I chose muscles. I came to you for more information about the disease and how it affected muscles. **What is your advice for other kids who have a parent diagnosed with a rare disease or chronic illness?** When you’re ready, learn about the condition so you can help your parents and tell other people about it. Knowing about the disease will help you understand limitations and what activities you can still do together. **What’s the hardest thing for you since my diagnosis?** We can’t always do the things we did together before, we have to find other things we can do and ensure time for you to rest. It’s a different you, having to rest instead of going from one thing to the next like before. **Can you share how you used your school presentation to start Another Helping?** I started a passion project the next school year called Another Helping with a goal of helping people with or affected by mitochondrial disease. I raise money through programs with MitoAction to assist in education, advocacy and awareness initiatives. MitoSantas will begin in November where I’ll be raising money to purchase Christmas presents for children with mitochondrial disease. ### RESOURCES MENTIONED [**MitoAction**](https://www.mitoaction.org/) [**Permission To Feel, Marc Brackett Ph.D.**](https://www.amazon.com/Permission-Feel-Unlocking-Emotions-Ourselves/dp/1250212847) [**Another Helping**](https://www.mitoaction.org/join-the-cause/anotherhelping/) [**Another Helping on Twitter @Bake4Mito**](https://twitter.com/bake4mito) [**Another Helping on Instagram @Bake4Mito**](https://www.instagram.com/bake4mito/) **Resource Type:** Podcasts --- ### [Episode 54: Advocate Like a Father](https://www.mitoaction.org/resources/advocate-like-a-father/) **Published:** May 27, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") <span data-mce-type=”bookmark” style=”display: inline-block; width: 0px; overflow: hidden; line-height: 0;” class=”mce\_SELRES\_start”></span> **ENERGY IN ACTION – EPISODE 054** Advocate Like a Father David Faughn shares his story about his daughter Katherine, how his family became part of the mitochondrial disease community and about the advocacy work he’s doing in his home state of Kentucky. ### EPISODE HIGHLIGHTS **Tell us about your daughter Katherine and her diagnosis journey.** Katherine hit all of the typical milestones for the first six months after she was born. At almost a year old, when we were expecting she’d be walking independently, she hit a plateau. We were no longer seeing a rapid development of her motor skills. Despite assistance through physical therapy and occupational therapy, Katherine still wasn’t able to walk more than a couple steps without falling. At two years old, she was referred to a neurologist for an MRI and we started our journey with an incorrect diagnosis of Infantile Neuroaxonal Dystrophy (INAD), a rare progressive disorder, based on what the doctors gathered from the MRI. We got to know other INAD families, researched a lot of medical literature, connected with experts and quickly became convinced that Katherine didn’t have INAD. Whole-exome sequencing results later revealed that Katherine had a mutation to a recessive nuclear gene called NUBPL. **What was it like to push through what you suspected was an incorrect diagnosis?** That was the first lesson we learned- that as Katherine’s parents we had to fight. Getting a diagnosis is hard, treatments are rarely available, every step of the way there are hurdles to jump for the insurance company. The insurance company didn’t want to cover genetic testing to confirm a diagnosis, which could open up treatment options. The rejection made me angry and I appealed to the insurance company, eventually getting the genetic testing approved. **Can you tell us about your work on Kentucky Revised Statute 304.17A-258?** The bill we got passed requires private insurance to cover mito cocktails. We started with an insurance denial for a mito cocktail for Katherine. I appealed to the insurance company to get the prescription for Katherine, but also started looking into getting the law changed so other families didn’t have to go through what we did. I discovered a law that mandated private insurance covered certain therapeutic food, formulas and supplements for certain metabolic or genetic conditions. Looking at the way the statute was written, I believed it would cover mito cocktails. I decided to attempt to get the statute amended to include mito cocktails and remove the compounding pharmacy restriction. ### RESOURCES & LINKS MENTIONED [**NUBPL Foundation Website**](http://www.nubpl.org/) — [**NUBPL Foundation Facebook Page**](https://www.facebook.com/nubpl.org) — [**Kentucky Revised Statute 304.17A-258**](https://apps.legislature.ky.gov/law/statutes/statute.aspx?id=45441#:~:text=Page%201-,304.17A-258) — **Resource Type:** Podcasts --- ### [EPISODE 058: TJ Strong](https://www.mitoaction.org/resources/tj-strong/) **Published:** July 6, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") <span data-mce-type=”bookmark” style=”display: inline-block; width: 0px; overflow: hidden; line-height: 0;” class=”mce\_SELRES\_start”></span> **ENERGY IN ACTION – EPISODE 058** TJ Strong Jackie Bautz is the sibling to TJ, who has a mitochondrial disease called MELAS. She shares the story about her brother’s diagnosis and what her family is doing to raise awareness and push for a cure. ### EPISODE HIGHLIGHTS **Can you tell us about your family and your brother’s diagnosis?** I come from a family with five siblings including myself and my younger brother TJ, who is 7 years younger. When TJ was born, he had failure to thrive issues, but overcame them and had a normal childhood until he was in middle school. Upon completing a school hearing test, he was referred to a hearing specialist where it was determined that he had 40% hearing loss, which he was born with. He was fitted with hearing aids and he went on to graduate high school and college. Two weeks after his college graduation, my parents called to tell me something was wrong with TJ, that they were rushing him to the hospital and weren’t sure what was wrong. During a week in the hospital, he had two major strokes and was released from the hospital without answers. A week later, TJ was diagnosed with the mitochondrial disease called mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes (MELAS). **How has the MELAS diagnosis affected your relationship with your brother?** It has been a learning process. Conversations are different since his strokes because he has to think about his responses, which can be uncomfortable. TJ still has the same interests as before so we can still connect on the same things as before, but there are limitations to what he can do, like working or driving. **How have your parents dealt with TJ’s diagnosis?** They’re very strong, but their plans for their lives has changed in that they moved to Florida to retire and travel, but they’re caring for TJ and they can’t leave him for more than a couple of hours at a time. It’s been difficult, but they’ve stayed very strong. **Is anyone else in your family a genetic carrier for MELAS?** TJ is the only carrier. My mom and I underwent genetic testing and my mom isn’t a carrier. This originated with TJ, which is even more rare. **Can you share about TJ Strong?** TJ Strong originated the first week when TJ was still in the hospital. We had t-shirts made and we started researching the disease to see what we could do for TJ and also the community. I came across MitoAction and we do a lot of fundraising and get involved in any events that we can. I’m running the Falmouth Road Race for MitoAction this August for the third year. ### RESOURCES & LINKS MENTIONED **[Falmouth Road Race](https://falmouthroadrace.com/)** — **Resource Type:** Podcasts --- ### [Dr. Neena Nizar - Share Your #RareDiseaseTruth & Give Love A Chance](https://www.mitoaction.org/resources/dr-neena-nizar-share-your-rarediseasetruth-give-love-a-chance/) **Published:** March 1, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") PARENTS AS RARE – EPISODE 076 Dr. Neena Nizar – Share Your #RareDiseaseTruth & Give Love A Chance Dr. Neena Nizar started the #rarediseasetruth movement. She was misdiagnosed for decades, but now knows she shares a diagnosis with her two sons. Neena is a wonderful person, incredible advocate and the founder of The Jansen’s Foundation. EPISODE HIGHLIGHTS **Can you tell us about yourself and your connection to the rare disease community?** I have a rare disease called Jansen Metaphyseal Chondrodysplasia, a skeletal disorder that affects less than 30 people worldwide. I had several misdiagnoses and was finally diagnosed after I had my second son. I married my husband and we were told that we wouldn’t have children. We were in the process of adopting when I became pregnant with our first son. He was born healthy and we didn’t know anything was wrong. Two years later our second son was born and we were notified during the pregnancy that something wasn’t right. That’s where the quest began and we started searching for a diagnosis. **What considerations did you and your husband have around starting a family?** We talked about it and had no idea if what I had would be passed on because no one else in my family shared my disease. Because we didn’t know at the time what I had or a good understanding of it and we really did believe the doctors that told us we wouldn’t conceive. We had conversations around the love we had to give a child, whether natural or adopted, and we knew we were ready for it. **How can someone respond when they’re navigating diagnosis and feeling disregarded?** I have learned to filter noise, to take away the emotion of a situation. If a doctor is saying something based on what he sees, I’ve learned in those instances to trust myself more. You owe it to yourself to be strong in those moments and see it for what it is– that the doctor doesn’t see or hear the full story. **Can you tell us about the #rarediseasetruth movement?** The hashtag was an organic creation that started during the pandemic. It upset me that covid treatments were released so quickly and it raised questions about why the rare disease community didn’t have treatments. I started venting on social media, calling out that we matter too. The hashtag caught on fire in ways I couldn’t have imagined and people still use it. It spotlights rare everyday, and we’re growing the population of people who are speaking openly and fearlessly. LINKS & RESOURCES MENTIONED https://twitter.com/NeenaNizar The Jansen’s Foundation – [https://www.thejansensfoundation.org/ ](https://www.thejansensfoundation.org/) Follow Adam Johnson on Twitter – Instagram – [https://www.instagram.com/rarediseasedad/ ](https://www.instagram.com/rarediseasedad/) LinkedIn – [https://www.linkedin.com/in/adam-johnson-8a1473125 ](https://www.linkedin.com/in/adam-johnson-8a1473125) Connect with MitoAction – [https://www.mitoaction.org/ ](https://www.mitoaction.org/) Facebook – [https://www.facebook.com/mitoaction ](https://www.facebook.com/mitoaction) MitoAction Twitter – [https://twitter.com/mitoaction Instagram https://www.instagram.com/mitoaction/ ]() LinkedIn – **Tags:** patient stories, podcast, rare disease **Resource Categories:** Caregivers & Family, Day-to-Day with Mito, Patient Stories **Resource Type:** Podcasts --- ### [A LC-FAOD Treatment from Ultragenyx and Available Resources - for US members only](https://www.mitoaction.org/resources/faodresources/) **Published:** June 22, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://www.mitoaction.org/wp-content/uploads/2021/08/Ultragenyx-2-Podcast-8-12-21.mp3 Join Energy in Action host, Stephanie Tomlinson as she interviews Bridget Reineking and Sylvia Mills from Ultragenyx Pharmaceutical. This podcast episode is intended for U.S. members of the MitoAction community. You can learn more about Dojolvi ®(triheptanoin) and find its full Prescribing Information that includes the Patient Information leaflet [here](https://www.ultragenyx.com/medicines/dojolvi-full-prescribing-information/). \**This podcast episode is intended for U.S. members of the MitoAction community.\** **Tags:** US Only **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** Podcasts --- ### [Lisa Weinberger - Be Your Own Advocate, Listen To Your Body, Take Control of Your Health, & Ask Questions](https://www.mitoaction.org/resources/lisa-weinberger-be-your-own-advocate-listen-to-your-body-take-control-of-your-health-ask-questions/) **Published:** May 26, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") <span data-mce-type=”bookmark” style=”display: inline-block; width: 0px; overflow: hidden; line-height: 0;” class=”mce\_SELRES\_start”></span> **PARENTS AS RARE – EPISODE 052** Lisa Weinberger – Be Your Own Advocate, Listen To Your Body, Take Control of Your Health, & Ask Questions Lisa Weinberger is a wife, mother, digital marketing professor and business owner with over 20 years of experience designing and leading corporate marketing programs. We talk in this episode about balancing work and family while living in the world of rare disease and chronic illness. ### EPISODE HIGHLIGHTS **When you were navigating a diagnosis, how did that affect your family at the time?** I was diagnosed with a rare disease called Pemphigus Vulgaris in 2018 after 30 years of varying symptoms. My disease rarely showed physical symptoms and I wasn’t open with my daughter or in-laws who lived just down the street. Around the same time that I began getting blisters and was concerned about hiding them from my daughter, my husband had a heart attack which captured her attention more. Afterwards, I spoke with her about what was going on, explaining my auto-immune disease and the symptoms I was experiencing. **When things are especially challenging because of your disease, how do you push through the days?** I have a glimmer of hope and I know I’ve been in similar situations before. I am a fighter and have a mentality to keep going. I push myself and I’ll continue to push myself with time to rest as needed, but I do tend to overdo it and not pace myself during the times I feel the best. **How do you adjust your life as a result of your circumstances and keep up with your family’s activities?** My husband did a lot when my daughter was younger, like going to birthday parties and after-school activities. My good hours are earlier in the day, so we’d go to the park and spend time with her during the earlier hours of the day. We didn’t have help at the time, so my husband and I worked together to balance everything. Now that my daughter is a teenager, she’s more settled and independent. **What advice do you have for parents listening?** Children observe and understand more than we sometimes think they can, especially if they’re a little older and have access to the internet. If they do have the ability to research things on the internet, sit down with them and show them where to find good sources of information about your disease. If your child is able to talk about it, keep communication open with them. **CONNECT WITH LISA** **[Website](https://pearlywrites.com/)** — **[Twitter @LisaWeinberger](https://twitter.com/lisaweinberger)** — [**Linkedin @pearlywrites**](https://www.linkedin.com/in/pearlywrites/) — ### RESOURCES MENTIONED **[It’s OK That You’re Not OK: Meeting Grief and Loss in a Culture That Doesn’t Understand](https://www.amazon.com/Its-That-Youre-Not-Understand/dp/1622039076)** — **Resource Type:** Podcasts --- ### [Dr. Stephanie Mihalas - Find Your Balance, Find Your Center](https://www.mitoaction.org/resources/dr-stephanie-mihalas-find-your-balance-find-your-center/) **Published:** May 27, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") <span data-mce-type=”bookmark” style=”display: inline-block; width: 0px; overflow: hidden; line-height: 0;” class=”mce\_SELRES\_start”></span> **PARENTS AS RARE – EPISODE 055** Dr. Stephanie Mihalas – Find Your Balance, Find Your Center Dr. Stephanie Mihalas is a licensed psychologist, nationally certified school psychologist and a mental health and chronic illness advocate. She’s also a rare disease mom and she has a lot of valuable insight to share with parents. ## EPISODE HIGHLIGHTS **Can you introduce yourself and tell us where your rare disease journey began?** I’m a psychologist and mental health and chronic advocate in Los Angeles, California. I’m also a wife and parent to a daughter in kindergarten. I’ve had chronic illness since I was 16 years old, but my rare disease journey began about a year after having my daughter. **How do you navigate rare disease with your husband and daughter?** With my training as a child psychologist, this weighs on me a lot. I know the things that create a space for a developing child and I feel like I’m failing or can’t give my daughter the perfect space. We try to have transparency to the best of our ability that is appropriate for her. She knows I have an illness, she she’s my injections, sees my medications and she knows what’s going on. We have appropriate discussions so that when things change, I’m able to reference it so she doesn’t internalize that she has done something wrong, as kids often do at her age, and help her to deal with frustration, sadness and feelings in an open way. **How can you talk to kids in a developmentally appropriate way about rare disease or chronic illness?** It’s important to have a continuing dialogue, even as kids get older, and never to take for granted that a child through different stages needs conversations around the illness or disease. Children, teens and young adults carry an immense weight when a parent has a chronic illness or rare disease and it’s important for a parent to take responsibility and check in with them periodically. With younger kids, language can be difficult, so incorporating movement during a conversation can be helpful. You can throw a ball, take a walk or do art. If a child doesn’t want to talk, don’t push it. Also make available someone for a child to talk to that isn’t you, like a therapist, another family member or clergy. **CONNECT WITH STEPHANIE** **[The Center for Well Being](https://askdrstephanie.com/)** — [**Twitter @askdrstephanie**](https://twitter.com/askdrstephanie) — **Resource Type:** Podcasts --- ### [Chris Freeman - Chronic Pain Dad](https://www.mitoaction.org/resources/chris-freeman-chronic-pain-dad/) **Published:** June 22, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") <span data-mce-type=”bookmark” style=”display: inline-block; width: 0px; overflow: hidden; line-height: 0;” class=”mce\_SELRES\_start”></span> **Resource Type:** Podcasts --- ### [Dalia’s Wish Makes Dreams Come True for the Del Forno Family](https://www.mitoaction.org/resources/dalias-wish-makes-dreams-come-true-for-the-del-forno-family/) **Published:** March 1, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **ENERGY IN ACTION – EPISODE 075** Dalia’s Wish Makes Dreams Come True for the Del Forno Family Nicole Del Forno is the mom of Gloria. Her family recently went on a wish trip at Give Kids the World Village and she joins us to share their experience. **EPISODE HIGHLIGHTS** **Can you tell us about your family and rare disease journey?** My daughter Gloria was born in 2018. At about 6 months old, we noticed she was reaching most milestones, but not babbling like a typical baby her age. At 9 months old, we were referred to a neurologist and then a geneticist. After genetic testing, we received a diagnosis of mitochondrial disease. Two years later with treatment, Gloria has progressed and we’re fortunate that she’s doing really well. **Your family was a recent recipient of Dalia’s Wish program. Can you talk about your experience?** We were so excited to be granted the trip and couldn’t imagine how wonderful it would be. Her school announced the trip to her with all of her friends present and it was such a cool experience. We spent a week at Give Kids the World Village and we didn’t have to worry about a single thing. It is the most magical place and Gloria felt like a normal person there, everything was accessible, she had the freedom to be independent and everyone spoke her language. All of the volunteers work so hard to make kids feel special. **What was your favorite part of your family’s wish trip?** My favorite moment of the whole experience was when Gloria went into the ice cream parlor and got her own ice cream and sprinkles because this was the first time that she was able to do something completely independent, without prompting or support. **What is your advice to other families granted a trip through Delia’s Wish program?** There are Give Kids the World Village groups you can join on social media where you can get information about the village and everything else you need to know. If you come in the summer, be prepared for Florida’s hot weather. Plan to spend a lot of time at the village because there is a lot to do there. **LINKS & RESOURCES MENTIONED** [**Give Kids the World Village**](https://www.gktw.org/) [**Dalia’s Wish**](https://www.mitoaction.org/wishes/) https://www.mitoaction.org/wishes/ [**MitoSantas**](https://www.mitoaction.org/mito-santas/) https://www.mitoaction.org/mito-santas/ [**MitoAction Newsletter**](https://www.mitoaction.org/newsletter-signup/) https://www.mitoaction.org/newsletter-signup/ **CONNECT WITH MITOACTION** [**Website**](https://www.mitoaction.org/) https://www.mitoaction.org/ [**Facebook**](https://www.facebook.com/mitoaction) [**Twitter**](https://twitter.com/mitoaction) https://twitter.com/mitoaction [**Instagram**](https://www.instagram.com/mitoaction/) [**LinkedIn**](https://www.linkedin.com/company/mitoaction) **Tags:** dalias wish, energy in action, podcast **Resource Categories:** Patient Stories **Resource Type:** Podcasts --- ### [Energy In Action Launch](https://www.mitoaction.org/resources/energy-in-action-launch/) **Published:** November 14, 2020 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://episodes.castos.com/5ed548a1cb08d7-35811046/Podcast-Intro-KM-ST.mp3 Join us for our new podcast series, Energy In Action. Energy in Action will consist of conversations with patients, families, researchers and thought leaders in the mitochondrial disease communities. These podcasts will give you a glimpse into the lives of families affected by mitochondrial disease and the latest in clinical trials, diagnosis, research and the advancement of therapies. New episodes will be released every Wednesday in our [Spotify](https://open.spotify.com/show/36tm5guSO0LB9JJIGnQq6w), [Google Podcasts](https://podcasts.google.com/?feed=aHR0cHM6Ly9taXRvYWN0aW9uLW1vbnRobHktbWl0by1leHBlcnQtc2VyaWVzLmNhc3Rvcy5jb20vZmVlZA), [Amazon Music](https://music.amazon.com/podcasts/84527f4f-ed43-4be2-a7d2-93beecbc4723/MitoAction) and [iTunes](https://podcasts.apple.com/us/podcast/mitoaction-monthly-mito-expert-series/id290467730) podcast libraries as well as on our [website](https://www.mitoaction.org/energy-in-action). If you would like to be a guest or suggest a topic, please email us at . **Resource Type:** Podcasts --- ### [Trying Not To Run Out Of Gas - A Young Adult's Journey with LCHAD and How She Continues to March Forward.](https://www.mitoaction.org/resources/asalser111820/) **Published:** November 18, 2020 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://episodes.castos.com/5ed548a1cb08d7-35811046/Alex-Salser-Final.mp3 Meet Alex Salser and learn about her journey with LCHAD. **Resource Type:** Podcasts --- ### [Finding My Path - A Young Adult's Journey To Live Beyond His Diagnosis.](https://www.mitoaction.org/resources/kalick112520/) **Published:** November 25, 2020 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://episodes.castos.com/5ed548a1cb08d7-35811046/Jordan-Kaelik-Edited.mp3 Meet Jordan Kalick and his mom Stacy Kalick! **Resource Type:** Podcasts --- ### [Raising Christopher - A Mom's Journey with LCHAD](https://www.mitoaction.org/resources/sharry120220/) **Published:** December 2, 2020 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://episodes.castos.com/5ed548a1cb08d7-35811046/Stephanie-Harry-Final-Interview.mp3 Meet Stephanie Harry! **Resource Type:** Podcasts --- ### [The Light at the End of the Tunnel...a mom's journey with MERRF Syndrome](https://www.mitoaction.org/resources/jfein120920/) **Published:** December 9, 2020 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://episodes.castos.com/5ed548a1cb08d7-35811046/Jessie-Fein-Final-Interview.mp3 Meet Jessica Fein! **Resource Type:** Podcasts --- ### [MitoSantas - Bringing Smiles to the Faces of Children Affected by Mitochondrial Disease](https://www.mitoaction.org/resources/mitosantas121620/) **Published:** December 17, 2020 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://episodes.castos.com/5ed548a1cb08d7-35811046/MitoSantas-Podcasat.mp3 Learn about our MitoSantas program and meet head Elf – Jennifer Schwartzott! **Resource Type:** Podcasts --- ### [COVID Preparedness and Building Your Flu Box...Tips to Help You Stay Safe.](https://www.mitoaction.org/resources/efogg122320/) **Published:** December 23, 2020 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://episodes.castos.com/5ed548a1cb08d7-35811046/Postive-Peach-Final.mp3 Meet Erich Fogg! **Resource Type:** Podcasts --- ### [The Positive Power of Peach...A Young Adults Inspiring Journey](https://www.mitoaction.org/resources/jwoods123020/) **Published:** December 30, 2020 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://episodes.castos.com/5ed548a1cb08d7-35811046/Postive-Peach-Final.mp3 Meet Jenevieve Woods! **Resource Type:** Podcasts --- ### [Life with Frankie...A Mom's Journey with Mito](https://www.mitoaction.org/resources/sleone012021/) **Published:** January 20, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://episodes.castos.com/5ed548a1cb08d7-35811046/Sue-Leone-FInal-Podcast.mp3 Meet Sue Leone! **Resource Type:** Podcasts --- ### [If You Keep the Patient First, You'll Never Go Wrong.](https://www.mitoaction.org/resources/zogenix012721/) **Published:** January 27, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://episodes.castos.com/5ed548a1cb08d7-35811046/Zogenix-Podcast-Recording-Final-v4.mp3 Meet Laurie & Carla from Zogenix! **Resource Type:** Podcasts --- ### [No One Fights Alone...A Family's Journey with Mito](https://www.mitoaction.org/resources/butler020421/) **Published:** February 4, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://episodes.castos.com/5ed548a1cb08d7-35811046/Butler-Family-Podcast-Final.mp3 Meet Mito-Mom Amanda Butler and her 2 children, Amanda and Layton! **Resource Type:** Podcasts --- ### [Owning My Story...The DadVocate](https://www.mitoaction.org/resources/ajohnson021021/) **Published:** February 10, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://episodes.castos.com/5ed548a1cb08d7-35811046/Adam-Johnson-Podcast-Final.mp3 Meet mito warrior and DadVocate, Adam Johnson! **Resource Type:** Podcasts --- ### [Service Dogs...A Man's Best Friend](https://www.mitoaction.org/resources/candocanines021721/) **Published:** February 18, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://episodes.castos.com/5ed548a1cb08d7-35811046/Can-Do-Canine-Podcast.mp3 Learn about service dogs with [Can Do Canines](https://can-do-canines.org/) and hear about their upcoming event, The Fetching Ball. **Resource Type:** Podcasts --- ### [Making Your Voice Heard Through Song](https://www.mitoaction.org/resources/hearyoursong030321/) **Published:** March 4, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://episodes.castos.com/5ed548a1cb08d7-35811046/Hear-Your-Song-Podcast.mp3 Meet Dan & Rebecca – the co-founders of [Hear Your Song!](https://www.hearyoursong.org/) **Resource Type:** Podcasts --- ### [The Effects of Having a Diagnosis of TK2](https://www.mitoaction.org/resources/zogenix031021/) **Published:** March 12, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://episodes.castos.com/5ed548a1cb08d7-35811046/Zogenix-Research-Study-Podcast.mp3 Meet Mark Jensen and Dagmar Amtmann and learn about their research study with Zogenix! **Resource Type:** Podcasts --- ### [Adventure Awaits...A Teen's Inspiring Journey with Mito](https://www.mitoaction.org/resources/aleeds031921/) **Published:** March 19, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://episodes.castos.com/5ed548a1cb08d7-35811046/Annie-Leads-Podcast.mp3 Meet Annie Leeds! **Resource Type:** Podcasts --- ### [It's Probably Genetic](https://www.mitoaction.org/resources/probablygenetic032721/) **Published:** March 27, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://episodes.castos.com/5ed548a1cb08d7-35811046/Probably-Genetics-Podcast.mp3 Tune in to meet Lukas from Probably Genetic and learn how you can find out if their DNA test is right for you! **Resource Type:** Podcasts --- ### [Lifeline: It's More Than What You Think](https://www.mitoaction.org/resources/oleyfoundation040321/) **Published:** April 3, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://episodes.castos.com/5ed548a1cb08d7-35811046/Oley-Final-Podcat.mp3 Tune in to learn more about [The Oley Foundation](https://oley.org/)! **Resource Type:** Podcasts --- ### [A Mom and Daughter's Journey With Mito!](https://www.mitoaction.org/resources/fobar041221/) **Published:** April 12, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://episodes.castos.com/5ed548a1cb08d7-35811046/Fobar-Final-Podcast.mp3 Meet Kari and Haliee Fobar! **Resource Type:** Podcasts --- ### [Exploring Palliative Care](https://www.mitoaction.org/resources/exploring-palliative-care/) **Published:** March 1, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Kimberly Matias, a social worker, and Michelle Hurty, a physician assistant, join me for an exploratory conversation about palliative care to dispel the myths that exist and provide information to my listeners. **PARENTS AS RARE – EPISODE 074** **Exploring Palliative Care** Kimberly Matias, a social worker, and Michelle Hurty, a physician assistant, join me for an exploratory conversation about palliative care to dispel the myths that exist and provide information to my listeners. **EPISODE HIGHLIGHTS** **What is palliative care?** Palliative care is a multi-disciplinary service that gets involved with patients and their families after the diagnosis of a serious or life-limiting illness. We work alongside the primary care team to coordinate communication, clarify any confusion or information, help the family along the journey and explore treatment goals. While hospice service is focused on end-of-life care with a six month or less prognosis, life expectancy isn’t a condition for palliative service and we may work with patients for many, many years. Our role is to advocate for the patient. **Who makes up a palliative care team?** In order to provide full care, most palliative care teams have a multi-disciplinary team which may include a social worker, chaplain, physicians, a physician assistant, nurse practitioner and pharmacist. **With disease progression and symptom presentation being different for every patient, who is a good candidate for palliative care?** Our goal is to capture people upstream, recognizing their treatment goals are going to change over time as their disease progresses or evolves. Palliate care is for any point after someone receives a diagnosis and we’re happy to get involved and be helpful all along the way. **At an initial palliative care appointment, what questions are helpful to patients and families to ask and how can they prepare?** Go in with an open mind, be open to having conversations and consider what you would like your healthcare to look like. It’s helpful to think in advance about how things are going at home and what kind of resources are needed. Identify your durable power of attorney for healthcare in advance and if you have a living will, bring those documents with you. **LINKS & RESOURCES MENTIONED** [**Get Palliative Care**](https://getpalliativecare.org/) https://getpalliativecare.org/ [**American Academy of Hospice and Palliative Medicine**](https://aahpm.org/) **FOLLOW ADAM JOHNSON** [**Twitter @RareDiseaseDad**](https://twitter.com/rarediseasedad) https://twitter.com/rarediseasedad [**Instagram @RareDiseaseDad**](https://www.instagram.com/rarediseasedad/) [**LinkedIn**](https://www.linkedin.com/in/adam-johnson-8a1473125) **CONNECT WITH MITOACTION** [**Website**](https://www.mitoaction.org/) https://www.mitoaction.org/ [**Facebook**](https://www.facebook.com/mitoaction) [**Twitter**](https://twitter.com/mitoaction) https://twitter.com/mitoaction [**Instagram**](https://www.instagram.com/mitoaction/) [**LinkedIn**](https://www.linkedin.com/company/mitoaction) **Tags:** energy in action, parents as rare, podcast **Resource Categories:** Care Management, Day-to-Day with Mito **Resource Type:** Podcasts --- ### [Caregiver Toolboxes...A Lifeline and Support](https://www.mitoaction.org/resources/caregivers042221/) **Published:** April 22, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://episodes.castos.com/5ed548a1cb08d7-35811046/Caregivers-Network-Podcast.mp3 Meet Nichole Goble and learn more about the [Caregivers Action Network](https://caregiveraction.org/)! **Resource Type:** Podcasts --- ### [Chronically-Inspired](https://www.mitoaction.org/resources/aarguin042821/) **Published:** April 28, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://episodes.castos.com/5ed548a1cb08d7-35811046/April-Pet-Coach-Podcast.mp3 Meet April Aguin! **Resource Type:** Podcasts --- ### [One Step Closer](https://www.mitoaction.org/resources/mitocanada050721/) **Published:** May 7, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://episodes.castos.com/5ed548a1cb08d7-35811046/MitoCanada-Podcast.mp3 Listen it to meet MitoCanada’s Chief Executive Officer Kate Murray and Chief Development Officer Catherine Mulvale. **Resource Type:** Podcasts --- ### [Patients as Partners in Ultragenyx LC-FAOD Research](https://www.mitoaction.org/resources/ultragenyx051221/) **Published:** May 12, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://episodes.castos.com/5ed548a1cb08d7-35811046/Ultragenyx-Final-Podcast.mp3 Join Energy in Action host, Stephanie Tomlinson as she interviews Emil Kakkis and Jessica Riviere from [Ultragenyx Pharmaceutical](https://www.ultragenyx.com/). On this podcast, Ultragenyx will share how the company entered into LC-FAOD research, its research efforts, and how LC-FAOD patient voices and community engagement are central to the planning, implementation, and advancement of Ultragenyx research and programs. Ultragenyx is proud to partner with MitoAction to provide the LC-FAOD community with information and updates through a series of discussions on MitoAction’s Energy in Action podcast and Monthly Expert Webinar Series. The podcast will be available on our [website](https://www.mitoaction.org/energy-in-action/), and [Spotify](https://open.spotify.com/show/4sqPqgPIbJ0sdTpTD4rr3X), [Google Podcasts](https://podcasts.google.com/feed/aHR0cHM6Ly9lbmVyZ3ktaW4tYWN0aW9uLWJ5LW1pdG9hY3Rpb24uY2FzdG9zLmNvbS9mZWVk), [Apple Podcast](https://podcasts.apple.com/us/podcast/energy-in-action-by-mitoaction/id1547649846) and [Amazon Music](https://music.amazon.com/podcasts/4f0649f2-c76f-4c96-84a3-ba679aa07f8d/Energy-in-Action-by-MitoAction) podcast libraries. \**This podcast episode is intended for U.S. members of the MitoAction community.\** **Resource Type:** Podcasts --- ### [Having a Voice That Deserves To Be Heard](https://www.mitoaction.org/resources/having-a-voice-that-deserves-to-be-heard/) **Published:** May 26, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") <span data-mce-type=”bookmark” style=”display: inline-block; width: 0px; overflow: hidden; line-height: 0;” class=”mce\_SELRES\_start”></span><span data-mce-type=”bookmark” style=”display: inline-block; width: 0px; overflow: hidden; line-height: 0;” class=”mce\_SELRES\_start”></span><span data-mce-type=”bookmark” style=”display: inline-block; width: 0px; overflow: hidden; line-height: 0;” class=”mce\_SELRES\_start”></span> Meet the team at Rare Patient Voice and learn how to make your voice heard! **Resource Type:** Podcasts --- ### [Giving You the Power to Take Control of Your Healthcare Journey While Moving Mito Research](https://www.mitoaction.org/resources/mitoactionmobile/) **Published:** July 2, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://episodes.castos.com/5ed548a1cb08d7-35811046/MitoAction-Care3-Podcast.mp3 Meet MitoAction’s CEO, Kira Mann and Care3’s CEO, David Williams to learn about MyMito App, our HIPPA compliant, comprehensive care planning and tracking platform for patients, caregivers and healthcare professionals. **Resource Type:** Podcasts --- ### [Another Helping](https://www.mitoaction.org/resources/anotherhelping/) **Published:** September 8, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://episodes.castos.com/5ed548a1cb08d7-35811046/Emma-Johnson-Podcast-Final.mp3 Meet Another Helping founder and daughter of the “Dadvocate,” Emma Johnson and learn how she combined 2 of her passions to help others who are affected by mitochondrial disease like her dad. **Resource Type:** Podcasts --- ### [Fight - Research - Hope - Cure](https://www.mitoaction.org/resources/curemitofoundation/) **Published:** September 16, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://episodes.castos.com/5ed548a1cb08d7-35811046/Cure-Mito-Podcast-Final.mp3 Meet Kasey Woleben and Sophia Zilber from the [Cure Mito Foundation](https://www.curemito.org/)! The Cure SURF1 Foundation was founded in 2018 by a group of families determined to fight for our children’s lives. Each of us has a young child diagnosed with SURF1 Leigh syndrome. Each of us has been told by doctors that there is no treatment, no cure, and no hope. And each of us has refused to accept this as a final answer. In 2021, after successfully blazing the trail for SURF1 gene therapy at UTSW we decided to expand our efforts and changed the name of our foundation from the Cure SURF1 Foundation to the Cure MITO Foundation. Our primary focus is advancing research towards a cure for Leigh syndrome and eventually for mitochondrial disease as a whole. A successful outcome will mean not only hope for our own children, but also life-saving treatments for future generations impacted by this disease. **Resource Type:** Podcasts --- ### [Community Collaboration to Push Clinical Trials Forward](https://www.mitoaction.org/resources/communitycollaboration/) **Published:** September 23, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **ENERGY IN ACTION – EPISODE 029** AllStripes & Cyclerion – Community Collaboration to Push Clinical Trials Forward Richard Elles, Director of Patient Advocacy & Industry Engagement with AllStripes and Chad Glasser, Director of Clinical Research with Cyclerion Therapeutics, join us to discuss a pivotal clinical trial that Cyclerion Therapeutics has and the collaboration we have with AllStripes to help move the research initiative forward. ### EPISODE HIGHLIGHTS **Can you tell us about Cyclerion’s MELAS Study?** Cyclerion Therapeutics has an ongoing clinical study in patients with Mitochondrial Encephalopathy, Lactic Acidosis, and Stroke-like episodes (MELAS) that’s evaluating the investigational drug 6463. The study is a 29 day study and looks at safety and tolerability primarily and also determining what 6463 does to the disease. Next steps are subsequent confirmatory studies to be conducted, further confirming safety and efficacy and to move closer to an eventual approval. **What is the importance of patient participation in clinical trials?** Drugs can’t be approved and the safety and efficacy of drugs can’t be evaluated without patient engagement. We have a responsibility to study drugs in a sufficient number of patients to fully understand effects and that’s how approval is justified and moves through phases of development. **What would you like qualified patients to know about participating in the trial?** We know a lot about this molecule and we feel confident in the safety profile and efficacy. This study has been designed to be as easy and feasible as possible. Things like remote visits and travel reimbursement are offered to make it more convenient for patients to participate. **What does AllStripes do and how does that work compliment pharmaceutical work?** The mission of AllStripes is to unlock new treatments for people affected by rare disease and knowing the one that is diagnosed is not just the one affected. We’ve introduced a two-sided platform that allows patients to access all of their medical records in one place while also enabling the generation of de-identified data from the community to power new treatment research from home. We’re seeking to empower patients to contribute with little effort and feel inspired to contribute to research while also having a place to advocate, share their stories and inspire others. We partner with companies like Cyclerion to gather data reported by healthcare facilities, hospital and other medical organizations and create a data set that is usable for clinical trial protocol writing, national history studies, comparative studies and other possibilities that widen the window for treatment. **How do you connect AllStripes patients with clinical trials based on their records and diagnosis?** It’s important for us to provide patients with educational resources, but also opportunities to get involved with companies like Cyclerion who are actively seeking participants in clinical trials and can help to move toward treatment options available to patients. Our platform has an updated list of clinical trials with the ability to indicate interest to receive more information about patient involvement. ### RESOURCES MENTIONED [**Cyclerion Therapeutics**](https://www.cyclerion.com/) [**U.S. National Library of Medicine Clinical Trials Resource**](https://clinicaltrials.gov/) [**Phase 2a Study of IW-6463 in Adults Diagnosed With MELAS**](https://clinicaltrials.gov/ct2/show/NCT04475549?cond=MELAS&draw=2&rank=1) [**AllStripes**](https://www.allstripes.com/) **Resource Type:** Podcasts --- ### [Trailer - Parents as Rare](https://www.mitoaction.org/resources/trailerpar/) **Published:** September 30, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") I am Adam Johnson, a dad and rare disease patient advocate, a self-proclaimed Dadvocate. From the onset of symptoms and after the diagnosis of a progressive mitochondrial disease with no treatment or cures, the isolation was almost as excruciating as the symptoms. I felt alone in so many ways, but in particular as a parent. I knew I couldn’t be the only person with a rare disease who was trying to raise children, but it felt like I was. Without the community I was seeking, I decided to build it myself. Living life as a parent with a rare disease can be paradoxical. We laugh and cry, we’re vulnerable and scared, we’re brave and afraid- all at the same time. Parents As Rare, a series brought to you by the Energy In Action podcast, is a community where parents who have a rare disease or chronic illness can connect, share, support and be supported. **Resource Type:** Podcasts --- ### [Making Wishes Come True - A Partnership with Give Kids the World Village](https://www.mitoaction.org/resources/gktwv/) **Published:** October 5, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **ENERGY IN ACTION – EPISODE 031** Making Mito Wishes Come True – A Partnership with Give Kids The World Village MitoAction and Give Kids The World have partnered to provide kids in the community an amazing experience. Amy from Give Kids the World joins me to share more about the organization and program offerings for wish families. ### EPISODE HIGHLIGHTS **What is the history of Give Kids The World?** The village was founded by Henri Landwirth, who has an incredible story as a holocaust survivor. After coming to the United States he studied hospitality in college and later went on to own and operate the first Holiday Inn just outside of Disney. He learned of wish families coming to the area and would offer to let them stay at his hotel for free. After a little girl wasn’t able to make her wish trip in time, Henri formed partnerships to help facilitate quicker fulfillment of wish trips. In 1986, Henri answered a need for Make-A-Wish and established Give Kids The World. Three years later, he opened Give Kids The World Village which has since grown to 166 villas, 89 acres and we’ve hosted over 176,000 families from all over the world. What started as a small vision to help wish families has grown and we’re honored to continue Henri’s legacy. **How do kids get a wish granted and what can they expect from Give Kids The World?** We work with over 220 wish granting partners around the world who identify wish families, determining that a child has a life-threatening or critical illness and that their wish involves central Florida. The wish granting organization works with us to set up accommodations at the village. In addition to the family villas, we serve all meals, we have two pools, a spa, a splash pad, entertainment programs, attractions and a gift fairy. It’s not just a hotel stay, but also a week’s worth of activities. Our theme park partners include Disney, Universal, Sea World, Legoland, Gatorland, Kennedy Space Center, Aquatica and several others. They provide a range of vacation options for families staying with us, which our guest experience team will arrange and plan prior to a family’s stay. **Can families come back to the Give Kids The World Village?** A wish trip is a once in a lifetime opportunity, but families with additional wish children can come back again. Otherwise, families are welcome to visit the village for day trips two times per calendar year as an alumni family. Often families come back and want to visit the Castle of Miracles, a really special place at the village. Every wish child gets a gold star when they arrive and they write their name or draw a picture on the star and give it to the star fairy who will hang it in the galaxies of the castle at night. They’ll get a star passport telling them where to find their star, so they can always come back to visit and find their star. ### RESOURCES MENTIONED [**Give Kids The World**](https://www.gktw.org/) **[Make-A-Wish](https://wish.org/)** [**Dream Factory** ](https://www.dreamfactoryinc.org/) **[The Rainbow Connection](https://www.rainbowconnection.org/)** **[Dreams Come True of Jacksonville](https://www.dreamscometrue.org/)** **[MitoAction Wish Trip Nomination Form](https://www.mitoaction.org/wishes/nomination/)** **Resource Type:** Podcasts --- ### [Rare New England Annual Conference](https://www.mitoaction.org/resources/rneconference/) **Published:** October 13, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") <span data-mce-type=”bookmark” style=”display: inline-block; width: 0px; overflow: hidden; line-height: 0;” class=”mce\_SELRES\_start”></span> **ENERGY IN ACTION – EPISODE 032** RNE Annual Conference Rare New England is a nonprofit in Massachusetts who serves the rare disease community in New England. Julie Gortze, Founder and Volunteer President of Rare New England, is sharing about the organization, how it started and about their upcoming conference on October 23rd. ### **EPISODE HIGHLIGHTS** **What is your annual conference about?** While there are a lot of resources available to patients, they don’t always know about them. We hold an annual conference each year in a New England state, but it will be virtual this year. The theme for the conference is resilience because the rare disease community is resilient, even still through the challenges of the pandemic. Attendance is free for patients and caregivers. **What is Rare New England’s strategic plan?** We started as a support group, not a nonprofit and people came to meetings from states away. I asked for donations to help feed lunch to the attendees, which is difficult to collect without being a nonprofit. We didn’t know the potential we could bring from the New England area though the programs we’ve added. We’re still growing and hope to expand the programs we have to be more efficient for families to access. **Can you share about the career fair program?** We have monthly career fairs for medical students to share with them what’s happening in the genetic world in hopes that they gain interest and perhaps go into genetics in medical school. ### **RESOURCES MENTIONED** [**RNE Annual Conference Registration**](https://www.eventbrite.com/e/improving-health-care-experiences-in-the-rare-disease-community-tickets-155702984819) [**Annual Conference Speakers & Agenda**](https://www.rarenewengland.org/2021) [**Rare New England**](https://www.rarenewengland.org/) **Resource Type:** Podcasts --- ### [The Mito Girl](https://www.mitoaction.org/resources/mitogirl/) **Published:** November 4, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **ENERGY IN ACTION – EPISODE 034** Meet The Mito Girl Daniela Gallo shares her journey of living with mitochondrial disease while balancing motherhood, working, spreading awareness and caring for herself. ### EPISODE HIGHLIGHTS **Can you share your diagnosis?** I have Kearns Sayre Syndrome (KSS), which I was diagnosed with four years ago, at the age of 31. I started showing symptoms when I was 12 years old, in the form of a droopy eyelid. Doctors speculated that muscles just didn’t develop well. And then I had an eye infection, went to the hospital and the ophthalmologist asked me to follow his finger so he could check my eye movement. I was surprised to learn that I had no ocular movement. I saw another specialist that diagnosed me with a mitochondrial disease called chronic progressive external ophthalmoplegia (CPEO). **Do you see local specialists or do you travel for care?** I’m lucky because I live in a city where we have a hospital linked to the university. There are specialists in the metabolic and genetics departments where I follow up. I am in touch with people from Italy and I know it’s not really straightforward there. **How does it work for you being a working parent with a rare disease in Switzerland?** It’s not easy because I’m also a single mom. But I’m lucky and I know I am. My kids Dad and I have a really good relationship and share custody. Our kids stay one week with me and one week with him. This helps me to have the time to recover in the off week. When it comes to work, I work part time because full time is impossible. I think I have found a good balance. I think it takes a lot of planning, a lot of listening to your body, really recovering when you need it. If you need to laugh, laugh. If you need to cancel an appointment, cancel. **Where do you get the bravery and grit to be honest about being a working mom with a rare disease on social media?** It’s my outlet. I felt really lonely after my diagnosis. I was left alone, battling this disease. I came across Facebook groups that were life saving for me. They helped me understand more about the disease and reassured me of a lot of things. Having that supportive network was essential. One of the reasons why I started posting on social media was simply because I wanted to share with people what it was like living with mitochondrial disease. But I’m also a mom, I’m a woman, I work. There are so many other things besides the disease. I don’t want people to feel alone, so I share what I go through to help others not to feel so lonely in this process. ### RESOURCES MENTIONED [**Daniela Gallo on Instagram @themitogirl**](https://www.instagram.com/themitogirl/?hl=en) **Resource Type:** Podcasts --- ### [The MitoSantas Program](https://www.mitoaction.org/resources/mitosantas/) **Published:** November 11, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **ENERGY IN ACTION – EPISODE 035** The MitoSantas Program We’re in the Christmas spirit at MitoAction. Jeannie Freeman and Stephanie Tomlinson discuss the popular MitoSantas program. Tune in to learn more about how you can support the program, how to become an elf or a recipient. ### EPISODE HIGHLIGHTS **What is the history of the MitoSantas program?** MitoSantas started in western New York in 2009 when a group of moms attending a support group meeting shared their struggles around Christmas time. People began offering to donate money and from then on, local families came together to support each other year after year to ensure mito kids had a great holiday. The program grew and eventually MitoAction got involved. **How many kids participate in MitoSantas?** The program is for kids affected by mitochondrial disease and siblings of those kids. Last year we had over one hundred kids. **Can families apply every year?** Families can apply annually. Each year we open an application asking questions about the child— favorite color, character, sports team, snacks, clothing sizes. The application asks the same questions for siblings. **How is the MitoSantas program funded?** We submit grant requests and obtain corporate sponsors. Since the program started in 2009, there has been a generous sponsor who chooses to stay anonymous and he accounts for a significant portion of the funding. We fundraise through different events that support the program and donations are also appreciated. **How do you become an elf?** Being an elf is an important part of the program. As a small staff, we can always use help to field requests, shop for gifts, wrap gifts and ensure gifts are delivered by Christmas. No matter where you live, there are elf duties you can do. Anyone who wants to volunteer can email info@mitoaction.org. ### RESOURCES MENTIONED [**MitoSantas Recipient Application**](https://www.mitoaction.org/mito-santas/application/) [**Support MitoSantas Program**](https://give.mitoaction.org/campaign/mitosantas/c240360) [**MitoSantas Program Page**](https://www.mitoaction.org/mito-santas/) [**MitoSantas on Facebook**](https://www.facebook.com/mitosantas) **Resource Type:** Podcasts --- ### [Parents as Rare: Parenting with VCP Disease](https://www.mitoaction.org/resources/par_peck/) **Published:** November 17, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") <span data-mce-type=”bookmark” style=”display: inline-block; width: 0px; overflow: hidden; line-height: 0;” class=”mce\_SELRES\_start”></span> **PARENTS AS RARE – EPISODE 036** Parenting with VCP Disease – Nathan Peck Nathan Peck is a husband, dad, VCP patient and the CEO of Cure VCP Disease. Through this organization, he is committed to bringing together patients, caregivers, researchers, pharmaceutical companies, other non-profits and investors to identify treatments and ultimately a cure for this rare, genetic disease. ### EPISODE HIGHLIGHTS **What is VCP Disease?** VCP disease is caused by a mutation in a gene called Valosin Containing Protein (VCP). I grew up with VCP, my mom and aunt are deceased from it and I have two uncles still living with the disease. VCP is a Multisystem Proteinopathy (MSP1) which means it affects multiple systems in the body, Inclusion Body Myopathy, Paget’s Disease of Bone, and / or Frontotemporal Dementia. VCP can also cause disorders such as Amyotrophic lateral sclerosis (ALS), Parkinsonism or Charcot-Marie-Tooth disease. There’s not a full understanding of the disease yet, so our focus is on finding families affected. We started Cure VCP Disease to organize the patients and science and facilitate collaboration. **How has your family history changed the trajectory of your journey?** VCP has been the black curse of the family and we knew there was a chance of developing systems at some point. Once I started experiencing systems, I decided to engage and do what I could do to influence change. With the availability of information and accessibility of the internet and social media, it’s easier to get involved and learn. There’s not going to be a fix for me, but there can be for my kids. **As a dad, thinking back to your diagnosis, what do you remember most?** I remember trying to keep it from my kids because we assumed they weren’t old enough to deal with it. We realized later that we needed to be more transparent about what was going on. **How have you adjusted the activities you do with your kids and how do you interact with them now with your limitations?** We play games and spend time as a family. I’m just going to progress forward and keep making memories with my kids. My goal is to do as much as I can while I can. **What would you say to a parent with a rare disease or chronic disease?** Only you know what you can do, but don’t settle. Keep pushing and adjust where you have to. Find a balance and care for yourself so you can be present for your kids and those moments that matter. ### RESOURCES MENTIONED [**Permission to Feel by Marc Brackett Ph.D.**](https://www.amazon.com/Permission-Feel-Unlocking-Emotions-Ourselves/dp/1250212847) [**TravelScoot**](https://www.travelscoot.com/) **Resource Type:** Podcasts --- ### [The Patient Teacher Program](https://www.mitoaction.org/resources/the-patient-teacher-program/) **Published:** December 2, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **ENERGY IN ACTION – EPISODE 037** **The Patient Teacher Program** Jake Athoe is a graduate of Boston University, where he earned a Bachelor of Arts in Biochemistry and Molecular Biology, with a minor in Public Health. During his time at BU, Jake’s interest in metabolism and genetics led him to a four-year research assignment in a lab focused on mutation’s in the energy production of carcinogenic cells. Jake’s graduate work to date has been at the Boston University Medical School, where he studied Genetic Counseling. This program included an intense two month internship working with the medical staff at Washington Children’s National Hospital on pediatric and metabolic disorders. Currently, Jake is advocating for patients with rare genetic metabolic disorders. ![](https://www.mitoaction.org/wp-content/uploads/2021/12/EP.37-300x300.png)  **EPISODE HIGHLIGHTS** **Can you share details about the patient-teacher registry program and how people can get involved?** We hope to raise awareness for people that don’t have that voice and we want to raise that voice for anyone that doesn’t have it. People can get involved by going to our registry page on the VMP Genetics website. Patients, parents, and anyone can be involved. We hope to also involve practitioners, nurse practitioners, nurses, students, genetic counselors and doctors. **What are some of the stories that you’ve been hearing from patients?** It feels like a lot of patients have not heard their stories told by anyone. And they end up in the emergency rooms with nurses and physicians who don’t have their stories told, and that’s what we want to change. **RESOURCES MENTIONED** [**VMP Genetics Website**](https://www.vmpgenetics.com/) [**Patient Teacher Registry**](https://www.vmpgenetics.com/edu-services/patient-teacher) **CONNECT WITH MITOACTION** [**Website**](https://www.mitoaction.org/) [**Facebook**](https://www.facebook.com/mitoaction) [**Twitter**](https://twitter.com/mitoaction) [**Instagram**](https://www.instagram.com/mitoaction/) [**LinkedIn**](https://www.linkedin.com/company/mitoaction) **Resource Type:** Podcasts --- ### [Patient Led Trials](https://www.mitoaction.org/resources/patient-led-trials/) **Published:** December 9, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") <span data-mce-type=”bookmark” style=”display: inline-block; width: 0px; overflow: hidden; line-height: 0;” class=”mce\_SELRES\_start”></span> **ENERGY IN ACTION – EPISODE 038** Patient Led Trials Steve Smith is a rare disease advocate, father, and a fierce fighter for rare disease patients. ### EPISODE HIGHLIGHTS **How did you become a rare disease advocate?** My advocacy started when my three year old was diagnosed with a rare disorder in 1990. My focus was on our family, but I also began looking to see what can be done medically and I was also pretty quickly introduced to the world of clinical research. I attended a conference where a doctor presented a breakthrough in genetic medicine. About ten years later, there was a clinical trial for a disease which is biochemically related to my son’s disease. Through a decade of advocating, I realized all diseases are interrelated and of the regulatory hurdles to rare disease drug development. **What can families do to advocate for themselves and for their children?** Time is definitely of the essence when talking progressive diseases. There’s a tug-of-war in the healthcare system, in the regulatory process and drug development, between safety and speed. As parents, we want speed. But things can be different than they were because we have modern science, advanced computing, more knowledge of the human genome, sophisticated collaboration. We can have safety and speed. Collaboration is important where families are increasingly part of the healthcare system. Newly diagnosed families should use their voice and collaborate. **How does the 21st Century Cures Act impact rare disease patients?** Rare disease advocates worked hard on the 21st Century Cures Act and it was a turning point in legislative change. What it did for rare disease drug development was allowed for an improvement of breakthrough therapy designation. It’s based on progress, on what’s really happening in the world. It also strengthens biomarker guidance, a way of having an interaction around a biomarker and proposed data before too many months pass. **Can you talk about newborn screening and how to support that effort?** Everybody can find details And you can do that on the EveryLife Foundation For Rare Disease website. They are one of the organizations for rare diseases that is advocating for newborn screening. When a baby is born, hospitals do a heel prick and check their blood for diseases, but what diseases are checked for is what’s at issue. Newborns are not screened to see if they have many progressive diseases. To get a disease on the Recommended Uniform Screening Panel (RUSP) takes years. Then states decide whether they’re going to test at their hospitals. EveryLife has a bootcamp for advocates available to anyone who wants to learn how to talk to their legislator about newborn screening. ### RESOURCES MENTIONED [**EveryLife Foundation**](https://everylifefoundation.org/) ### CONNECT WITH MITOACTION [**Website**](https://www.mitoaction.org/) [**Facebook**](https://www.facebook.com/mitoaction) [**Twitter**](https://twitter.com/mitoaction) [**Instagram**](https://www.instagram.com/mitoaction/) [**LinkedIn**](https://www.linkedin.com/company/mitoaction) **Resource Type:** Podcasts --- ### [Silver Linings with Sarah Kate](https://www.mitoaction.org/resources/silverlinings/) **Published:** December 22, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") <span data-mce-type=”bookmark” style=”display: inline-block; width: 0px; overflow: hidden; line-height: 0;” class=”mce\_SELRES\_start”></span> **ENERGY IN ACTION – EPISODE 040** Silver Linings with Sarah Kate Sarah Kate Frey is a mitochondrial disease patient who is always looking on the bright side, seeking silver linings in the darkest experiences. She is the author of *Alice Eloise’s Silver Linings: The Story of a Silly Service Dog* and is in the process of writing a second book about her friend and service dog, a doodle named Alice Eloise. ### EPISODE HIGHLIGHTS **How are you connected to the mito world?** Like a lot of patients, my path to a mitochondrial disease diagnosis was not a straight line. At about 12 years old, I came home from horseback riding camp really sick with a high fever and a staph infection in my throat that had me sick for months. I landed in the ER numerous times in a year for extreme dehydration and high inflammation markers. The following year in dance class, I sprained my ankle. Within the week, I received a Reflex Sympathetic Dystrophy (RSD) and Complex Regional Pain Syndrome (CRPS) diagnosis. Not long after, I had extreme GI symptoms and saw a gastric motility doctor who did gastric emptying studies and further testing. I was diagnosed with Gastroparesis and then later with Hemophagocytic lymphohistiocytosis (HLH). What led to a mitochondrial disease diagnosis was tying everything together. **Can you tell us about Alice Eloise and how you came to author children’s books?** I love dogs and wondered how a service dog could help me. My sweet doodle, Alice Eloise, and I are a self-trained service dog team. She’s my silver lining through being sick, so silver linings has become a mission for me. I decided to write a book about a girl and her dog, about silver linings and looking on the bright side. When Alice Eloise came along and stole my heart, it was time to tell our story. And that’s what we’re doing. The first book is written through the puppy eyes of Alice Eloise and her perspective of becoming a service dog. The biggest lessons from the story are no matter what you’re going through, look for silver linings, never give up and seek the beauty in the world. **What will the second book be about?** It’s about a trip to the zoo with Alice Eloise, which started out as a scene in the first book. We ended the first book after her service dog test, so I decided to add to the story with another book. The premise of this book is about being someone else’s silver lining, and knowing that some of the best silver linings in life are the people around us and our interactions with one another. ### RESOURCES MENTIONED [**Alice Eloise’s Silver Linings: The Story of a Silly Service Dog**](https://sarahkatessilverlinings.com/once-upon-a-silver-lining-store/) [**Sarah Kate’s Silver Linings Blog**](https://sarahkatessilverlinings.com/blog/) **Resource Type:** Podcasts --- ### [Everylife Foundation Newborn Screening](https://www.mitoaction.org/resources/everylife-foundation-newborn-screening/) **Published:** January 5, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") <span data-mce-type=”bookmark” style=”display: inline-block; width: 0px; overflow: hidden; line-height: 0;” class=”mce\_SELRES\_start”></span> **ENERGY IN ACTION – EPISODE 041** EveryLife Foundation Newborn Screening The EveryLife Foundation is dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policies that advance the equitable development of treatments, cures and life-saving diagnoses. Claire Ellis and Dylan Simon join me to discuss the importance of the Newborn Screening Saves Lives Reauthorization Act. Many rare disease patients are found through the newborn screening process, a full panel containing 35 disease screens. ### EPISODE HIGHLIGHTS **What is newborn screening?** Newborn screening detects conditions that, if left untreated, can cause disabilities, developmental delays, serious illness or even death. If diagnosed early, many of these disorders can be managed successfully. Newborns are screened for genetic, metabolic, hormonal, and functional conditions that are not otherwise apparent at birth. In addition to testing, newborn screening programs consist of educational and resource materials for parents and training for healthcare professionals. **How can the community get involved?** Anyone can get involved by reaching out and contacting their senators about Senate Bill 350 and the importance of this legislation for the community. Let them know that you support the Newborn Screening Saves Lives Reauthorization Act as it is currently written. **Why don’t all 50 states conduct the same newborn screening?** The disorders that newborns are screened for is set at the state level and each state implements their screening program differently. We’re working to pass RUSP Alignment Legislation so that as disorders are added to the RUSP, states will automatically add these disorders to their newborn screening panels. The newborn screening legislation aims to align states, implement a timeline for screening to begin, and ensure resources are available for states to fund newborn screening panels and any disorders added to it in the future. **How is a new diagnosis added to the Recommended Uniform Screening Panel (RUSP)?** This is done through the Federal Advisory Committee, Heritable Disorders in Newborns and Children, which is under the Health Resources and Services Administration (HERSA). The advisory committee looks at properly identifying newborns, properly treating newborns and the overall benefit. **How many newborns are identified annually through newborn screening as having one of the 35 diseases?** The current estimation is approximately 1 in 300 newborns, though some states are not testing for all 35 diseases on the federal RUSP. ### CONNECT WITH EVERYLIFE [**Website**](https://everylifefoundation.org/) [**EveryLife Foundation for Rare Diseases on Facebook**](https://www.facebook.com/EveryLifeOrg/) [**EveryLife Foundation @EveryLifeOrg on Twitter**](https://twitter.com/EveryLifeOrg) [**EveryLife Foundation on Instagram**](https://www.instagram.com/EveryLifeOrg/) [**EveryLife Foundation for Rare Diseases on YouTube**](https://www.youtube.com/channel/UCL155EYAyLhYiPe-a1PbXTw) ### RESOURCES MENTIONED [**Newborn Screening Action Center**](https://everylifefoundation.org/newborn-screening-take-action/) [**Support Legislation**](https://everylifefoundation.org/newborn-screening-take-action/support-legislation/) [**RUSP Alignment Legislation One Pager**](https://everylifefoundation.org/wp-content/uploads/2021/12/Newborn-Screening-One-pager2.pdf) **Resource Type:** Podcasts --- ### [Empowering Parents Nationwide](https://www.mitoaction.org/resources/empowering-parents-nationwide/) **Published:** January 12, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") <span data-mce-type=”bookmark” style=”display: inline-block; width: 0px; overflow: hidden; line-height: 0;” class=”mce\_SELRES\_start”></span> **ENERGY IN ACTION – EPISODE 042** Empowering Parents Nationwide Marsha Quinn is the parent of two children who have Autism. As the Co Executive Director for Parent to Parent USA, she joins us to share the organization’s mission and the resources they provide to parents of children with disabilities. ### EPISODE HIGHLIGHTS **Can you tell us about Parent to Parent USA?** Parent to Parent USA was started about 50 years ago with a group of moms in Nebraska who wanted to provide parents of children with disabilities with peer to peer emotional support. Parent to Parent USA now has 36 statewide alliance members across the US and we’re growing to all 50 states and territories. The mission of Parent to Parent USA is to ensure that all families have access to peer to peer emotional support. A family of an individual with any disability or special healthcare need can contact us for help and we will match them with a trained support parent. It’s a free intervention that we find helps people get through life and get through their child’s disability or diagnosis. **What does volunteer training consist of?** It’s all research and evidence-based training. We train on self care, cultural competency or humility, active listening, grief and many other elements. Each of our alliance members have their own training. Part of the process is ensuring each person is put into a database and categorized so they can be matched based on varying parent needs or diseases. **How does Parent to Parent USA expand and develop into additional areas?** We’ve created strong and robust committees between the board and volunteers from the network, part of which is a membership committee. One of the membership committee’s goals is to grow to all 50 states, to better engage with our existing members, and offer more value for memberships through training, engagement, and networking opportunities. As a committee, we’re seeking other organizations in states we’re not in that we can partner with, then we reach out to see if they’re interested in adopting our program. ### CONNECT WITH PARENT TO PARENT USA [**Website**](https://www.p2pusa.org/) [**Email**](mailto:memberinfo@p2pusa.org) [**Facebook**](https://www.facebook.com/p2pusa) [**Instagram**](https://www.instagram.com/p2pusa/) ### RESOURCES MENTIONED [**Alliance Member Map**](https://www.p2pusa.org/parents/) **Resource Type:** Podcasts --- ### [Parents as Rare: Cowden Syndrome and Male Mental Health - David Ross](https://www.mitoaction.org/resources/par_davidross/) **Published:** January 19, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **PARENTS AS RARE – EPISODE 043** Cowden Syndrome & Male Mental Health – David Ross David Ross is a rare disease leader in men’s mental health. He plans and hosts valuable international support calls focused on men’s mental health in the rare disease community. David is also a dad with a rare disease called Cowden Syndrome. ### EPISODE HIGHLIGHTS **How did finding out about your disease shape your relationship with your daughter?** I felt I wasn’t supportive enough to my mother when she was facing Cowden Syndrome. When I was diagnosed with the same condition after she passed, while I couldn’t go back and change how I supported my mother, I could support others. Looking back, I focused a lot on advocacy and my mother’s legacy. I’ve shifted my focus in the last year to my daughter and myself. My daughter needs more support and we need more time for us, and our relationship has become better because I’ve recognized and acted on that. **When did men’s mental health become a focus of your advocacy?** Someone brought to my attention that a lot of men in the rare disease community didn’t seek support or speak out about what they were going through. As I searched for my voice in the rare disease community, I decided to set up international group meetings for men who need a platform to share what they’re going through and get mental health support. **What was your experience opening up about your feelings, thoughts and struggles for the first time?** After my mother passed away and in wanting to make a difference for myself and others, I felt strongly that I needed to speak out about what I was going through and how I was impacted. It has taken time to learn how to speak up, what to say and what not to say. While it was scary, connecting with others in the community continues to help me and inspires me to get my story out. **What is your advice for other parents with a rare disease?** Feel the feelings. There are so many feelings and emotions that come with chronic illness and rare disease, and you need to give yourself permission to feel all of them when they arise. Sometimes writing down what you’re going through can help to express your feelings. ### RESOURCES MENTIONED [**ONCE UPON A GENE – Episode 114 – The Bravery of the Brokenhearted – A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman**](https://effieparks.com/podcast/episode-114-noah-siedman) [**Rare Revolution Magazine, Advice From Rare Dads: Top Tips for Rare Parents**](https://rare-revolution-wp-images.s3.eu-west-1.amazonaws.com/wp-content/uploads/2021/10/19100033/Top-Tips-from-RARE-Dads-for-RARE-Parents-Final.pdf) [**Rare Disease Male Support Group**](https://www.facebook.com/groups/991558431661517) **Resource Type:** Podcasts --- ### [Removing Barriers in Ultra-Rare](https://www.mitoaction.org/resources/curears/) **Published:** February 2, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **ENERGY IN ACTION – EPISODE 044** Removing Barriers in Ultra-Rare Joining me in this episode are Desiree Magee & Ashley Rowland of CureARS, a non-profit organization dedicated to spreading awareness, connecting & providing support to affected families and funding research for the ultra-rare Mitochondrial ARS genes. ### EPISODE HIGHLIGHTS **Desiree, can you introduce yourself and tell us how you’re connected to the mitochondrial disease community?** My 6 year old daughter Daphne was diagnosed at a year old after a six month diagnosis journey. My daughter’s disease has two names- Leukoencephalopathy with thalamus and brainstem involvement and high lactate (LTBL) and Combined oxidative phosphorylation deficiency 12 (COXPD12). Daphne is primarily affected by speech delay, hypotonia, and global delays in learning and performing everyday tasks. **Ashley, can you introduce yourself and tell us how you’re connected to the mitochondrial disease community?** My daughter Aubrie is three and a half years old and she has a disease called leukoencephalopathy with ovarian failure (LKENP) from the AARS2 gene. She was diagnosed at 2 years old. **Can you share about Cure ARS?** It started as discussions around how we could raise money for research and how we could help our kids and other families. In order to fund a research project, we started the nonprofit. Our mission is to spread awareness, connect and provide support to affected families and fund research for the ultra-rare mitochondrial ARS genes in order to pave the way to suitable treatment options and ultimately a cure. **Can you share details about the symposium coming up in February?** The Mitochondrial ARS (Mt-aaRS) Genes Annual Scientific Symposium is a one day event on February 10, 2022 and will feature world-renowned doctors and researchers. The goal of the symposium is to bring worldwide collaboration between researchers and clinicians to build a stronger working relationship and put patient faces to the data and the impact they’re making. **Does Cure ARS have a patient registry?** We have a registry through CoRDS at Sanford Health, which will be launching soon. ### RESOURCES & LINKS MENTIONED [**Daphne’s Lamp**](https://www.daphneslamp.com/) [**Cure ARS**](https://www.curears.org/) [**Cure ARS on Facebook**](https://www.facebook.com/curears) [**Mitochondrial ARS (Mt-aaRS) Genes Annual Scientific Symposium**](https://www.curears.org/symposium) [**ARS Gene Community** ](https://www.facebook.com/groups/ars.gene.community) [**Cure ARS Shop**](https://www.curears.org/shop) **Resource Type:** Podcasts --- ### [Live Life, Dream Big, Be Positive](https://www.mitoaction.org/resources/live-life-dream-big-be-positive/) **Published:** February 9, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **ENERGY IN ACTION – EPISODE 045** Live Life, Dream Big, Be Positive Stacy and Ari Goldberg share the story of their Mito Warrior. Rina lived an authentic be-positive life. She faced multiple medical challenges with resiliency and left a legacy of an award-winning film, The Magic Bracelet. ## EPISODE HIGHLIGHTS **Can you tell us about Rina’s mito journey?** Rina had medical difficulties from the time she was born. She experienced fevers, overheating, developmental delays, low muscle tone, difficulty walking and other symptoms. She was diagnosed with mitochondrial disease in 2004. Shortly after, she suffered a metabolic stroke and she was given a nasogastric (NG) tube and feeding tube. Rina’s blood pressure and heart rate required monitoring and caused her to be hospitalized several times. A jejunostomy tube, also called a J-tube, was placed to help her get constant fluids. Just after that, she had a port inserted to have IV fluids running 24/7 so she could live at home. In 2009, Rina suddenly couldn’t walk after an infection in her legs. Despite treatment, Rina never walked independently again. We began a downhill journey of serious crises. A few months later, Rina’s night nurse wasn’t able to control her breathing and she was admitted to the hospital. Her treatment included being on a ventilator, which later required a trach tube and constant use of the ventilator to breathe. **What is your advice for new parents on a diagnosis journey who want to advocate for their child?** Every doctor is not an expert on every medical issue, so if you feel like a doctor isn’t acknowledging a concern, find another physician. When finding a doctor and building your medical team, follow your gut and look for those who are open to listening and who are parent and child driven. **Can you share about The Magic Bracelet?** Rina was very creative, and with the help of a family friend, she took an interest in coming up with a film concept to bring attention to mitochondrial disease. She wanted to spread awareness through a fun and witty film. Medical truth and authenticity was important to convey in the film, but despite mitochondrial disease not having a cure, the film doesn’t have a sad ending. Rina went on hospice in September 2010 and she asked me to promise to take care of her film and get it to Hollywood. The Make a Film Foundation took Rina’s film on as a project and in December 2012, The Magic Bracelet, was produced in Hollywood. ### RESOURCES & LINKS MENTIONED [**Rina’s Magic Bracelet Movie Facebook Page**](https://www.facebook.com/magicbraceletevent/) [**The Magic Bracelet Website**](https://www.rinasmovie.com/) [**Make A Film Foundation**](http://www.makeafilmfoundation.org) **Resource Type:** Podcasts --- ### [Parents as Rare - Family Coping, Communication, & Mental Health Resources - Dr. Jennifer Young, Postdoctoral Scholar, Biomedical Ethics - Stanford University](https://www.mitoaction.org/resources/parents-as-rare-family-coping-communication-mental-health-resources-dr-jennifer-young-postdoctoral-scholar-biomedical-ethics-stanford-university/) **Published:** February 16, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **PARENTS AS RARE – EPISODE 046** Family Coping, Communication, & Mental Health Resources – Dr. Jennifer Young, Postdoctoral Scholar, Biomedical Ethics – Stanford University Dr. Jennifer Young is a trained marriage and family therapist who has focused her research on families with rare genetic conditions. Her goal is to improve family coping, communication, and access to mental health resources for the rare disease community, especially for the under-served. ### EPISODE HIGHLIGHTS **Can you introduce yourself?** I’m a marriage and family therapist by training and I have a PhD in family science, the study of family relationships. Most of my work has been around families with rare genetic conditions. I’ve been working closely with the undiagnosed diseases network at Stanford and doing in-depth interviews with families. My goal is to build awareness about the challenges for individuals and families in their relationships and to build awareness for mental health providers so they can meet their unique needs. **How does your work impact your mental health?** One of the first lessons I learned is how to be present for clients, but to put that outcome in a box and move on. It’s not always easy. Having a supervisor and solid group of colleagues to debrief and get feedback is helpful. **How does someone find resources if they need support?** A primary care provider will likely know someone they can refer. Insurance companies will also have covered providers available online or by calling. Psychology Today has has a therapist locator tool to perform a detailed search and refine results. What’s most important is feeling connected to your therapist, so ask for a referral to another therapist if you need to. **For families going through genetic testing for various health conditions, how do you help people cope with a VUS outcome or lack of answers?** It’s important to focus on what someone has control over, like managing symptoms and ensuring they’re getting quality care for symptoms that can be managed. A lot of times, the benefit of whole genome sequencing or whole exome sequencing is more psychological or social, not clinical. **What advice do you have for parents going through diagnosis themselves?** The fear and emotion of parents often contributes to the weight of conversations with children. Kids are very resilient, but it’s important to manage emotions so children don’t feel the need to regulate a parent’s emotions. Be in-touch with yourself and ensure you have the resources you need so you can have an open line of communication with your children. ### CONNECT WITH JENNI [**Twitter**](https://twitter.com/JenniYoungPhD) [**Email**](mailto:youngjl@stanford.edu) **RESOURCES MENTIONED** [**Psychology Today Therapist Finder**](https://www.psychologytoday.com/us) **Resource Type:** Podcasts --- ### [The Strength of a Mom](https://www.mitoaction.org/resources/the-strength-of-a-mom/) **Published:** March 16, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **ENERGY IN ACTION – EPISODE 047** The Strength of a Mom Tonie DeLorenze is impacted by mitochondrial disease herself and also has three children with mitochondrial disease. ### EPISODE HIGHLIGHTS **What has your journey been like with mitochondrial disease?** I was an athlete in high school, but always had issues with breathing and lung capacity. As I got older, more symptoms developed, all related to my endocrine system. I had twins in 1995, had another child in 1997 and another in 2000. In 2000, I had a heart attack, had to have my thyroid removed, developed PCOS and a lot of other endocrine-related issues began surfacing. I discovered that I had mitochondrial disease through testing performed on my children, who also have mitochondrial disease. **What is your advice for parents who feel they need to advocate for their children and push for a diagnosis?** I believe you know your child better than anyone. Do your research, ask questions and push for answers. **What’s your advice for parents newly on the diagnosis journey?** Control your fear. It’s normal for a parent or someone who doesn’t feel right to be afraid of what it could be. I had no one to talk to or turn to for support, but if you have someone to support you, seek them out. If you don’t, reach out to me. As difficult as it is, stay positive and stay strong. It doesn’t help anyone if you’re not in a headspace of positivity. Lastly, never ever compare your child to another child. As a caregiver, find a way to carve time out for yourself and squeeze in selfcare. **From a mother’s perspective, what did you need from those around you that you didn’t get when you were navigating your journey with young kids?** Just be there to talk and offer a sense of normalcy. I was so tired and would have loved to have time to sleep and shower. I went through a dark time and it didn’t have to be that way. It was bad enough that my kids were sick, but with a little support from people who were in my life before my kids were born, it would have been life changing for me. ### RESOURCES & LINKS MENTIONED [**Peach: An Exceptional Teen’s Inspiring Journey for Universal Acceptance**](https://www.amazon.com/Peach-Exceptional-Inspiring-Universal-Acceptance/dp/1539367339/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=1646425842&sr=1-1) [**Peach: Celebrating Life in the Shadow of Death**](https://www.amazon.com/Peach-Celebrating-Life-Shadow-Death/dp/198750142X/ref=sr_1_1?qid=1646425904&refinements=p_27%3AJenevieve+%28Peach%29+Woods&s=books&sr=1-1&text=Jenevieve+%28Peach%29+Woods) [**Positive Peach Packages**](https://www.mitoaction.org/programs-support/support/positive-peach-packages/) ### CONNECT WITH MITOACTION [**Website**](https://www.mitoaction.org/) [**Facebook**](https://www.facebook.com/mitoaction) [**Twitter**](https://twitter.com/mitoaction) [**Instagram**](https://www.instagram.com/mitoaction/) [**LinkedIn**](https://www.linkedin.com/company/mitoaction) **Resource Type:** Podcasts --- ### [Parents as Rare: Parenting & Living Life With Chronic Pain](https://www.mitoaction.org/resources/parents-as-rare-parenting-living-life-with-chronic-pain/) **Published:** March 16, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **PARENTS AS RARE – EPISODE 048** Parenting & Living Life With Chronic Pain – Ross McCreery Ross McCreery is a dad, husband, advocate, writer and speaker. In 2006, Ross was diagnosed with a rare disease called Complex Regional Pain Syndrome (CRPS). In 2016 he founded CRPS Awareness Day in Saskatchewan to educate the public and raise awareness for those living with the disease. Ross also serves as a board member for the SaskPain Foundation where he hopes to help improve and change the lives of those living with chronic pain. He also advocates and speaks to serve as a voice for those who suffer chronic pain, he’s authored several published pieces, appeared on television programs and believes in the power of a strong community of rare disease advocates with diverse voices who can encourage change and progress for all. ### EPISODE HIGHLIGHTS **Can you tell us a little bit about yourself and your rare disease diagnosis story?** I was successful in my career, I was married and life was going in the direction I wanted it to go. I had just came back from China after adopting my first daughter and had what should have been a simple surgery. The swelling and loss of mobility in my hand that resulted was the onset of my disease symptoms and Complex Regional Pain Syndrome (CRPS) diagnosis journey. **What was your experience like discussing your CRPS diagnosis with your children?** We say it how it is and believe in transparency. From the earliest age that they could understand, we had conversations with them about how things needed to be done differently. Having conversations with our kids and being honest and up front with them was a daily occurrence, especially as we adapted and changed. **How have your conversations evolved as they’ve grown older?** Conversations are simpler now because they understand better and have a background living with it for awhile. We don’t have to explain as much, they’re more understanding of the situation and can figure out a lot themselves. We still have conversations with them at times as things continue to happen or change. **What wisdom do you have to share with listeners?** We don’t value our stories enough. Our stories are our power and it’s the power of the story that touches people. I encourage people to share their story. ### CONNECT WITH ROSS [**Contact**](https://painfullyoptomistic.com/contact-me) [**Instagram**](https://www.instagram.com/painfullyoptomistic/) [**Twitter**](https://twitter.com/Rossco006) [**Facebook**](https://www.facebook.com/Painfully-Optomistic-192150737539022/) ### RESOURCES MENTIONED [**Painfully Optomistic Blog**](https://painfullyoptomistic.com/) [**No Time Like the Future: An Optimist Considers Mortality**](https://www.amazon.com/Time-Like-Future-Considers-Mortality/dp/1250265614) [**SaskPain Foundation**](https://www.saskpain.ca/) **Resource Type:** Podcasts --- ### [Living Rare - An Adult's Perspective](https://www.mitoaction.org/resources/living-rare-an-adults-perspective/) **Published:** March 23, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") <span data-mce-type=”bookmark” style=”display: inline-block; width: 0px; overflow: hidden; line-height: 0;” class=”mce\_SELRES\_start”></span> **ENERGY IN ACTION – EPISODE 049** Living Rare – An Adult’s Perspective Fred Jacobowitz has been diagnosed with Carnitine Palmitoyltransferase Type II (CPT-II/CPT2) Deficiency, a type of fatty acid oxidation disorder. He shares his diagnosis experience, lessons learned and what his rare disorder journey has been like. ### EPISODE HIGHLIGHTS **When did your CPT2 symptoms begin?** I had difficulty keeping up with other kids when I was young. In high school, I excelled in the sport of swimming, but after workouts I had difficulty climbing out of the pool. In college, I kept getting rhabdomyolysis, the breakdown of damaged muscle which results in the release of muscle cell contents into the blood, which can further lead to kidney failure. It wasn’t until I was an adult that I was diagnosed with adult onset myopathic CPT2. **At what point did you realize your symptoms were serious and you needed to seek answers?** Years later after I was married and had kids, I started experiencing chest pain and was told I was having a heart attack after undergoing a stress test. My wife introduced me to a cardiologist who just started his own practice. He looked over my medical history and determined I didn’t have a heart attack at all. I told him about my symptoms and he recalled a speaker he heard at a conference and said I had some sort of metabolic muscle disorder. He referred me to an endocrinologist, who was confident that I had CPT2 and could prove it through a series of tests. Not the symptoms I experienced from childhood, but the heart attack is what brought me to a diagnosis. **What primary symptoms do you experience with CP2?** People express symptoms differently at different times. For me, if I overdo it I get tired, I get muscle fatigue and lightheaded. I started taking Triheptanoin (C7), which helps to manage my symptoms in addition to diet and exercise. Before I started taking C7 I would get very sick and now I get sick and recover like a normal person would. **How did receiving a diagnosis impact your life?** I learned about what my diet should be like, what exercise should include and how to walk the tightrope between building and breaking muscle. My physician suggested I participate in a clinical trial, which was a turning point in my journey. ### RESOURCES & LINKS MENTIONED [**What can you do despite CPT Type II (CPT2) Facebook Group**](https://www.facebook.com/groups/CptType2/about/) — **[Ultragenyx](https://www.ultragenyx.com/)** — [**2022 International Metabolic Conference**](https://www.mitoaction.org/internationalmetabolicconference/) — **Resource Type:** Podcasts --- ### [Top 10 Tips for Empowerment & Being Your Own Advocate](https://www.mitoaction.org/resources/top-10-tips-for-empowerment-being-your-own-advocate/) **Published:** May 25, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **ENERGY IN ACTION – EPISODE 051** Top 10 Tips for Empowerment & Being Your Own Advocate Cristy Balcells is the Associate Director of Patient Advocacy and Public Policy for Zogenix and the mother of Eva, who has Leigh Syndrome, a type of mitochondrial disease. Christy joins me for a conversation around empowerment and shares her list of 10 tips for being a great mitochondrial disease advocate for yourself or someone you care for. ### EPISODE HIGHLIGHTS **Become an expert in your own disease** Get an accurate diagnosis because without a specific diagnosis, a lot of doors are closed to clinical trials, insurance coverage, participating in a patient registry or general eligibility for treatment. After you have a diagnosis, become an expert on your disease and diagnosis because no one will be invested in it like you are, whether for your child or yourself. **Know your baseline** Baseline is a medical concept important for clinical trials. Determine your baseline by considering your average good days and bad days. Know and document your baseline so if you start a new treatment or therapy, you can identify how it’s affecting your disease. **Tell people about your disease and know how to ask for support** To set boundaries, use a script and be specific that you’re not seeking advice, only support. Practice saying, “I’m going to talk to you about something I’m dealing with and I don’t need your advice. I just want you to hear me and be there for support”. If someone asks how they can help, provide options that would be helpful. **Reflect like an interviewer** Allow questions to serve as an opportunity to raise awareness about your disease and always restate a question in your answer. **Keep good records** Use technology to stay organized and ensure your medical records are accessible. Keeping thorough and well-organized records is easier for you, but also helps when you have an opportunity to participate in a clinical trial, research study or equipment grant. **Stay informed** Subscribe to all of the newsletters on patient sites because knowledge is power. Set up Google alerts for keywords which will provide you a periodic digest around the keyword. You can also stay informed by joining social media or local support groups. **Prioritize your symptoms and set goals** You won’t be able to address every concern in every appointment, so prioritize your symptoms to discuss them with your physician. Daily tracking of your baseline data will help you know if symptoms are improving or getting worse and know if the symptom should be prioritized at your next check-up. **Be a micro influencer** Documenting your journey can spread awareness to other people. Micro influencers in the disease space are respected and powerful because they make a difference. **Hire yourself** You are the Director of Communications for yourself or your child’s diagnosis. Provide updates and check in regularly with everyone on your team and keep developing relationships in your network. **Amplify your voice** Your experience is valuable and only you can share it. No one else can represent your experience. Participate in clinical trials, patient registries, surveys and interviews. ### RESOURCES & LINKS MENTIONED [**Zogenix**](https://zogenix.com/) — [**MayBeMito**](https://www.maybemito.com/) — [**MyMito App**](https://www.mitoaction.org/mobile_new/) — [https://www.mitoaction.org/mobile\_new/](https://www.mitoaction.org/mobile_new/) [**AllStripes**](https://www.allstripes.com/) — **[UMDF](https://www.umdf.org/)** — [**Cure Mito**](https://www.curemito.org/) — [**International Mito Patients**](https://www.mitopatients.org/) — **[Mito Canada](https://mitocanada.org/)** — [**Create a Google Alert**](https://support.google.com/websearch/answer/4815696?hl=en) — [**Life with a Vent**](https://www.youtube.com/channel/UCHwOT3pjEA3EgShKomTuTDw) — [**The Mito Girl**](https://www.instagram.com/themitogirl) — [**Jeremiah Gracen TK2D Warrior**](https://ne-np.facebook.com/JeremiahGracenTK2DWarrior) — **Resource Type:** Podcasts --- ### [Life with Leigh's](https://www.mitoaction.org/resources/life-with-leighs/) **Published:** July 13, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **ENERGY IN ACTION – EPISODE 058** Life with Leigh’s Krista Price is the mom of two children with Leigh’s Syndrome. She shares her diagnosis journey and speaks to the importance of trusting your gut as a parent and advocating for your children to get answers. ## EPISODE HIGHLIGHTS **Can you tell us about your mitochondrial disease journey?** My daughter Ellie is 8 and my son Henry is 6. Ellie started having developmental issues when she was four months old, mainly delayed in meeting milestones. She wasn’t turning over, was sluggish, and not as active as you’d expect a baby to be. Within a few years, Ellie was behind in gross motor skills, fine motor skills and speech. Henry didn’t exhibit the same symptoms. After a referral to a developmental specialist, Henry and Ellie were both scheduled for an MRI. The results revealed that the mitochondrial area of both of my children’s brains were damaged and we were referred to a mitochondrial specialist to confirm a Leigh’s Syndrome diagnosis. My kids were both prescribed the mito cocktail and they both responded well within a month. **How are your children doing today?** They’re doing really well. We just had a follow-up appointment with the mitochondrial specialist and they’re progressing and happy with where they’re at. We still have to deal with potential defects of organs related to Leigh’s Syndrome and mitochondrial disease in general. Ellie has a heart defect called Wolff-Parkinson-White (WPW) syndrome. Both Ellie and Henry have eye turns which affects their vision. **How do your kids manage having a rare disease?** They’re very resilient, but they don’t talk about it much. Ellie is more aware of the disease and the physical limitations of her body and it’s been difficult to see her struggle with that. She’s learning to navigate situations that arise at school. **What advice do you have for parents newly on their diagnosis journey or parents that suspect something is not right with their child?** You know your child more than anyone. If you think something is wrong, something is off, or something should be addressed by the doctor, challenge the doctor. Speak up and don’t be afraid to. **As a caregiver, how do you find the balance of caring for your kids and caring for yourself?** I have learned the importance of managing my mental health. I think humor is so good to have in your life. I get comedic relief wherever I can. Educating myself about Leigh’s Syndrome has helped me to cope as well. It’s important to feel the hard feelings and then move on. **Resource Type:** Podcasts --- ### [Owning My Story](https://www.mitoaction.org/resources/owning-my-story/) **Published:** July 20, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") <span data-mce-type=”bookmark” style=”display: inline-block; width: 0px; overflow: hidden; line-height: 0;” class=”mce\_SELRES\_start”></span> **PARENTS AS RARE – EPISODE 059** Owning My Story Adam Johnson’s world was turned upside down when he went from being a healthy 35 year old with an exciting path ahead, to a 35 year old with a rare disease that left him wondering what could have been. It’s his story and he owns it and he adds to it through rare disease advocacy. As a self-proclaimed dadvocate, he learned to own his story through blogging, podcasting and sharing on social media. ### EPISODE HIGHLIGHTS In the early stages of his symptom manifestation and diagnostic process, Adam felt alone, as if he were the only person going through a similar struggle. No one he knew, especially at his age, was going through the same experience. He knew there had to be others and initially used Twitter to turn his hopes of offering support and advocacy into action and connect with others who could support each other- @rarediseasedad was born. While connecting with people he didn’t know was intriguing, connecting with people he did know was scary because he would have to open up about himself and what he was going through. With each interaction, he hid behind his Twitter handle. With the realization that he was a husband, dad, son, brother, nephew, uncle, cousin, friend, neighbor and acquaintance who happens to have a rare disease, rare disease didn’t define him, but it was a part of him and couldn’t be ignored. Adding his name to his account was how he decided to move forward, to be transparent and vulnerable in hopes that it would help someone else along the way. It was time to own his story and his advocacy journey has only further advanced his story into this podcast- Parents As Rare. Adam hopes to continue building a community of parents who are working through a rare disease, to connect, support and provide comfort for others. **Resource Type:** Podcasts --- ### [Meet the Bartles](https://www.mitoaction.org/resources/meet-the-bartles/) **Published:** August 3, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") <span data-mce-type=”bookmark” style=”display: inline-block; width: 0px; overflow: hidden; line-height: 0;” class=”mce\_SELRES\_start”></span> **ENERGY IN ACTION – EPISODE 060** Meet the Bartles Jake and Cami Bartle have been married for three years and they join us to share their rare disease experience and how the diagnosis has affected them as a young couple. ### EPISODE HIGHLIGHTS **Cami, what is it like to be married to someone with a rare disease?** We didn’t know that Jake had mitochondrial disease until 5 months after we were married. He had a seizure, was in the hospital and he received a diagnosis. Having a sudden diagnosis was shocking and made me realize nothing is guaranteed. At the beginning, the experience was isolating, but we’ve found community through the United Mitochondrial Disease Foundation, and I’ve been able to connect with more caregivers. **Jake, what do you do for a living?** I went to school and got my Masters degree in elementary education and I’ll be teaching 6th grade social studies. After my diagnosis, I looked up life expectancy and it helped me to reflect and re-evaluate what I wanted to do with my life. **Cami, what do you do for a living?** I work in marketing and I’m thankful to work from home so I can better support Jake. I’m also thankful for a manager and team that are understanding when I have to be at doctors appointments or away from work to be more available to Jake. **As a young couple, how do you structure work/life balance and make every day count?** We try to have dinner together every night and watch tv together. We’re intentional about not being on our phones when we’re together and we take date night very seriously. We’re intentional about the time we have together and we make sure to create time for each other. **How did you cope with receiving a diagnosis during the pandemic with limited resources available to you?** We both did individual therapy and we did some work together to get unstuck. Going through the diagnosis wasn’t easy for either of us and we had to process through it individually for differing reasons. It took time to come to terms with the diagnosis and what it meant for our future. We’re always working on controlling what we can and letting go of what we can’t. ### LINKS & RESOURCES MENTIONED **[United Mitochondrial Disease Foundation](https://www.umdf.org/)** — [**Instagram: @us\_and\_melas**](https://www.instagram.com/us_and_melas/) — [https://www.instagram.com/us\_and\_melas/](https://www.instagram.com/us_and_melas/) **Resource Type:** Podcasts --- ### [Parenting with Sarcoidosis & Discussing the Global Genes 2022 Rare Patient Advocacy Summit](https://www.mitoaction.org/resources/parenting-with-sarcoidosis-discussing-the-global-genes-2022-rare-patient-advocacy-summit/) **Published:** August 18, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **PARENTS AS RARE – EPISODE 062** Mary Morlino – Parenting with Sarcoidosis & Discussing the Global Genes 2022 RARE Patient Advocacy Summit Mary Morlino is the Rare Concierge Patient Services Manager at Global Genes. Mary and I will be speaking on a Parenting While Rare panel at the upcoming 2022 RARE Patient Advocacy Summit. The summit is one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies. Visit the Global Genes website to get more information about attending in-person in San Diego or virtually, September 12th-14th. ### EPISODE HIGHLIGHTS **Can you tell us about yourself and how rare disease has impacted you?** I work at Global Genes and I’m the Co-Founder of MarylandRARE, an organization that serves the rare disease community in the state of Maryland. I have two young adult daughters. When they were 7 and 9 years old, I was visiting my sister in California when I collapsed for an unknown reason. I spent a week in the hospital undergoing various testing and was released without any answers, only confirmation that something was wrong with my heart. I flew home and a day later I was hospitalized again, underwent additional testing and had a pacemaker put in. Several years later, my health started to decline rapidly and I had to wear an external defibrillator vest while I consulted with heart transplant doctors. A final test was a biopsy that revealed I had Sarcoidosis, an inflammatory disease where groups of cells create granulomas which inhibit blood flow and function. **What were the conversations like with your daughters about your diagnosis?** It was difficult because I was in the hospital, there was no hiding it, and my children were old enough to Google whatever they wanted about the disease. We had a series of conversations, giving them information and leaving the door open for future conversations or questions. Even as adults, we still talk, but they monitor me and concern themselves with how I’m doing and I wish they didn’t have to feel that way. **What advice do you have for navigating work, advocacy, parenting and disease?** I’ve had to shift to a less physical life and find a balance of personal growth and personal contribution to help me feel valued. This is why I got into advocacy- it fed me energy, allowed me to contribute and helped me to feel positive about my value in the world. I disregarded and eliminated anything in my life that didn’t need focus and energy. My best tips are to schedule rest, eat healthy, have compassion for your body and balance your priorities. If you can, find something valuable to you and focus on it. **LINKS & RESOURCES MENTIONED** **[Global Genes](https://globalgenes.org/)** — [**MarylandRARE**](https://marylandrare.org/)— [**2022 RARE Patient Advocacy Summit**](https://globalgenes.org/event/rare-patient-advocacy-summit/) — [**Foundation For Sarcoidosis Research**](https://www.stopsarcoidosis.org/) — **[EveryLife Foundation for Rare Diseases](https://everylifefoundation.org/)** — **Resource Categories:** Patient Stories **Resource Type:** Podcasts --- ### [School Tips for Kids with Mito](https://www.mitoaction.org/resources/education-and-school-advocacy-tips-and-cristy-balcells-and-kirsten-casale/) **Published:** September 7, 2012 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Kids with Mito are complex. Navigating the educational system is also complex. Often parents are wonderful advocates but don’t know or understand the law. How can parents help their kids get the most out of their school experience? We will tackle these questions and address the myths and obstacles in our interactive and informative discussion. **Sound too familiar?** - My child’s teachers just don’t get it. - Why have an IEP vs. a 504? - What is OHI and why is it important for kids with Mito? - What are some real-life examples of accomodations and modifications for my child? - What am I allowed to ask for? What are our rights? - Do I need to pay for outside evaluations in order to get services for my child? - The school told me they don’t accept that diagnosis. - The school wants to help but they say they just don’t have the resources to offer therapies for my child. - Maybe homeschooling is the best option…. **Resource Categories:** School Advocacy **Resource Type:** Expert Series --- ### [Stress Relief for the Holidays](https://www.mitoaction.org/resources/stress-relief-for-the-holidays/) **Published:** December 3, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join Marcelle Longlade; yoga teacher, chronic condition advocate, biomedical engineer, and devoted entrepreneur for a chair yoga session and discussion about relieving some stress during the upcoming holiday season! https://youtu.be/o7C_p-QRvUY **Resource Categories:** AADC, Day-to-Day with Mito **Resource Type:** Expert Series --- ### [2019 Mito Town Meeting](https://www.mitoaction.org/resources/2019-mito-town-hall/) **Published:** January 11, 2019 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The annual town hall meeting is our way of kicking off the new year by sharing all that is planned for the next 12 months. We’ll hear from organizations and companies around the globe that have special opportunities, programs, and projects for patients and families with mitochondrial disease. We’ll hear from the following organizations: - MitoAction - Mitochondrial Medicine Society - North American Mitochondrial Disease Consortium - UMDF - Acton Pharmacy - Miracles for Mito - Stealh BioTherapeutics - Reata Pharmaceuticals - Ultragenyx - VMP Genetics - BioElectron - MitoCanada - Astellas Pharmaceuticals - ThriveRX - GeneDX - Columbia University Medical Center - Oley Foundation - CNNH NeuroHealth - MitoQ - Australian Mitochondrial Disease Foundation https://youtu.be/EswMZ2acLz4 **Resource Categories:** Town Hall Meetings **Resource Type:** Expert Series --- ### [Help is on the Way!](https://www.mitoaction.org/resources/help-is-on-the-way/) **Published:** September 13, 2019 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Mitochondrial Disease can impact in many ways both an individual and everyone who cares for them: - Health care needs - Emotional support - Basic needs - Community Services Join us as we review the range of programs and services that can help to lessen the toll of this diagnosis, and also to hear from YOU: what has made a difference for you and your family! https://youtu.be/puXsa95KRj4 **Resource Categories:** Day-to-Day with Mito **Resource Type:** Expert Series --- ### [Genetic Testing - Genome Sequencing A-Z for Mitochondrial Disease](https://www.mitoaction.org/resources/genetic-testing-genome-sequencing-a-z-for-mitochondrial-disease/) **Published:** December 6, 2019 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/gYml3sMBPuI **Resource Categories:** Diagnosis, Understanding Mito **Resource Type:** Expert Series --- ### [2020 Mito Town Hall](https://www.mitoaction.org/resources/2020townhall/) **Published:** January 10, 2020 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join us for the annual Mito Town Hall Meeting! The annual town hall meeting is MitoAction’s way of kicking off the new year by sharing all that we have in store for the next 12 months! We will hear from organizations and companies around the globe that have special opportunities, programs and projects for patients and families affected by mitochondrial disease. https://youtu.be/Ucbtv_zh3HI **Resource Categories:** Town Hall Meetings **Resource Type:** Expert Series --- ### [The Power of Rare Disease Advocacy](https://www.mitoaction.org/resources/the-power-of-rare-disease-advocacy/) **Published:** February 7, 2020 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Advocates are the key to creating real change. Learn the power that you as a patient and caregiver have, what you can do to move the needle for your rare disease and how to get more involved! https://youtu.be/TuEecuvepQ4 **Resource Categories:** Advocacy **Resource Type:** Expert Series --- ### [Understanding the New Recommendations on the Safety of Drug Use in Patients with a Primary Mitochondrial Disease](https://www.mitoaction.org/resources/safetyofdruguse/) **Published:** February 27, 2020 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Clinical guidance is often sought when prescribing drugs for patients with primary mitochondrial disease. Theoretical considerations concerning drug safety in patients with mitochondrial disease may lead to unnecessary withholding of a drug in a situation of clinical need. The aim of this new study was to develop consensus on safe medication use in patients with a primary mitochondrial disease. The study and updated Safety of Drug Use list can be viewed [here](https://www.mitoaction.org/medicationsafety/). https://youtu.be/jrgDQhzyXL8 **Resource Categories:** Treatments **Resource Type:** Expert Series --- ### [Ins and Outs of Social Security](https://www.mitoaction.org/resources/hines-ssi/) **Published:** April 2, 2020 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction and Annette Hines on April 3, 2020 for our April Monthly Mito Expert Series. #### Ins and Outs of Social Security Navigating Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) can be overwhelming. This session will be an overview of rules and regulations of both programs, especially for working adults, as well touching on some other public benefits options. https://youtu.be/oDThXmO1K5M **Resource Categories:** Insurance **Resource Type:** Expert Series --- ### [Q&A - Impacts of COVID-19 on FAOD's](https://www.mitoaction.org/resources/covid19-faod/) **Published:** April 7, 2020 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction and Dr. Jerry Vockley from [UPMC Children’s Hospital of Pittsburgh](https://www.facebook.com/ChildrensPgh/?__tn__=K-R&eid=ARA7lo8LLzc-GuI5P9tXUjCqAjU80q18D5SlSTBhsI6LOjsW-9D71fHPGhR06HZy0lg3LGO73a5vdwIO&fref=mentions&__xts__%5B0%5D=68.ARCpC96_v7fKhf75oT_5JMn8Gw-ZdxHsFeivuvQUgcty8_aLV8tcTZGt4dyN7ah2F-g02dFKAH-nS5GUIWM0by2fL2QV3T52pdZO4IojyOAtNfpiVOihnQ8OSyfff9GHBI6WnVWs7nOmHITLizOA8SQ7p0xZc5efCo1B_py0t3NkhSIQJLH0BZwj9_SILOyI1gbEjznPW0ZVscRY9deSqHJJlhVnHIXipvkWT-T6X_1kTmjFQQAbI3zJY9qYm82_mCRjprwAYcH3d6kxCaST7bjsyKDC-ZNSOvfa_i1Ljxeobtb8WRDSDgxhjd-aHieBVngPRIeqGU_9tviejg) for a Q & A to discuss your questions and concerns about the impact of COVID-19 for Fatty Acid Oxidation Disorders. If you have any additional questions that were not answered here, you can submit them to the “[Ask the Expert](https://informnetwork.org/ask-the-experts/)” section on the INFORM website. https://youtu.be/IWUv1wdOlio **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** Expert Series --- ### [Medical Cannabis & Mito](https://www.mitoaction.org/resources/medicalcannabis/) **Published:** May 1, 2020 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction and Dr. Fran Kendall of [VMP Genetics](https://www.vmpgenetics.com/) on May 1 for our May Monthly Mito Expert Series! Her topic will be: Medical Cannabis & Mito: Historical Perspectives, Mechanism of Action and Other Need to Knows. https://youtu.be/2IkpNKSsuf0 **Resource Categories:** Treatments **Resource Type:** Expert Series --- ### [Mitochondrial Genetics and Diseases](https://www.mitoaction.org/resources/drwallace/) **Published:** June 5, 2020 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Douglas Wallace, the Director of The Center for Mitochondrial and Epigenomic Medicine at Children’s Hospital of Philadelphia (CHOP) presents on Mitochondrial Genetics and Diseases for our June Monthly Mito Expert Series presentation! https://youtu.be/E2r3s19jTgc **Resource Categories:** Understanding Mito **Resource Type:** Expert Series --- ### [IEP Considerations for Children with Mitochondrial Disorders](https://www.mitoaction.org/resources/iepconsiderations/) **Published:** August 7, 2020 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction and Gena Padgett, a licensed school psychologist for our August Monthly Mito Expert Series presentation titled *IEP Considerations for Students with Mitochondrial Disorders.* https://youtu.be/DJ-ifCj9VJU **Resource Categories:** Day-to-Day with Mito, School Advocacy **Resource Type:** Expert Series --- ### [Mito Community Call with the Two Disabled Dudes](https://www.mitoaction.org/resources/twodisableddudes/) **Published:** September 14, 2020 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction and featured guest Kyle Bryant of the Two Disabled Dudes for a community call to encourage and inspire you as we kick off Mitochondrial Disease Awareness Week! The topic of the call will be: Life Is About How We React – including themes of overcoming obstacles, people-first language, and self image. There will be a Q&A following the discussion. https://youtu.be/cl6D7Qntwqg **Resource Categories:** Awareness **Resource Type:** Expert Series --- ### [Overlap Between Mitochondrial Disorders and Disorders of Neurotransmitter Metabolism](https://www.mitoaction.org/resources/anselm2020/) **Published:** October 9, 2020 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction and Dr. Irina Anselm for our October Mito Expert Series presentation titled, *“Overlap Between Mitochondrial Disorders and Disorders of Neurotransmitter Metabolism”.* https://youtu.be/R-kdz-gcoLs **Resource Categories:** AADC **Resource Type:** Expert Series --- ### [PTC743 (Vatiquinone) for the Treatment of Mitochondrial Disease With Associated Epilepsy](https://www.mitoaction.org/resources/2020ptc743/) **Published:** November 6, 2020 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction and Matthew Klein and Francesco Bibbiani from PTC Therapeutics for our November Mito Expert Series presentation titled, “PTC-743 (Vatiquinone) for the Treatment of Mitochondrial Disease With Associated Refractory Epilepsy”. https://youtu.be/NBUjA2zyy5U **Resource Categories:** Clinical Trials, Treatments **Resource Type:** Expert Series --- ### [2021 Mito Town Hall Meeting](https://www.mitoaction.org/resources/2021townhall/) **Published:** January 15, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The annual town hall meeting is MitoAction’s way of kicking off the new year by sharing all that we have in store for the next 12 months! We will hear from organizations and companies around the globe that have special opportunities, programs and projects for patients and families affected by mitochondrial disease. https://youtu.be/eIoph43Vs1s **Resource Categories:** Town Hall Meetings **Resource Type:** Expert Series --- ### [Patients as Partners in Drug Development](https://www.mitoaction.org/resources/patientpartners/) **Published:** February 12, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction and Dr. Madhu Davies from [Reneo Pharmaceuticals](https://reneopharma.com/) for our February Monthly Mito Expert Series titled “Patients as Partners in Drug Development.” https://youtu.be/_ZECpQpF0Kc **Resource Categories:** Clinical Trials **Resource Type:** Expert Series --- ### [Clinical Trials and COVID-19](https://www.mitoaction.org/resources/ptc022421/) **Published:** February 24, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Meet Dr. Matthew Klein from PTC Therapeutics and learn how to best navigate clinical trials during COVID-19. https://youtu.be/buuPP4cCcAg **Resource Type:** Expert Series --- ### [Whole Genome Sequencing for Rare Disorders: The Future Is Here](https://www.mitoaction.org/resources/diagnostics/) **Published:** April 9, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction , Christine Stanley, Chief Director of Clinical Genomics at Variantyx and David Keane, Director of Rare Disorders at Variantyx, Inc. for our Monthly Mito Expert Series presentation titled Whole Genome Sequencing for Rare Disorders: The Future Is Here on Friday, April 9, 2021. https://youtu.be/hAPIYZHsG_E **Resource Categories:** Diagnosis **Resource Type:** Expert Series --- ### [Clinical Trials: Why you should care and why you should participate. How do we know what we know?](https://www.mitoaction.org/resources/clinicaltrials/) **Published:** May 14, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction and Dr. Jerry Vockley from [University of Pittsburgh Children’s Hospital](https://www.chp.edu/our-services/rare-disease-therapy/doctors-and-staff/jerry-vockley) on Friday, May 14, 2021 for our monthly expert series presentation! https://youtu.be/hAIz36qS1oY **Resource Categories:** Clinical Trials **Resource Type:** Expert Series --- ### [Moving Mito Medicine: Reneo Strides Study](https://www.mitoaction.org/resources/strides/) **Published:** June 4, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") On Friday, June 4 at 12:00pm EST, we will be joined by Dr. Madhu Davies from Reneo Pharmaceuticals for our June Mito Expert Series presentation, titled *Moving Mito Medicine: Reneo Strides Study.* https://youtu.be/ZqsMvhQBHZ0 **Resource Categories:** Clinical Trials **Resource Type:** Expert Series --- ### [Back to School...IEP's, 504 Plans and More!](https://www.mitoaction.org/resources/backtoschool/) **Published:** August 13, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join licensed school psychologist, Gena Padgett and high school history teacher / FAOD mom, Beth Folcher to prepare yourself for sending your child(ren) back to school by exploring the differences between IEPs and 504 plans while learning some helpful tips to support your child(ren) in school. https://youtu.be/o2KNLMq_IOY **Resource Categories:** Day-to-Day with Mito **Resource Type:** Expert Series --- ### [Getting the Mito Community Research Ready](https://www.mitoaction.org/resources/researchready/) **Published:** October 4, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") As more and more clinical trials are taking place for mitochondrial disease, we want to ensure that you are ready to get involved. Listen in to learn about a new partnership focused on Leigh Syndrome between MitoAction, AllStripes and Cure Mito Foundation that will help you become research ready. Kira Mann, CEO will represent MitoAction, Rich Elles, Director of Patient Advocacy & Industry Engagement will represent AllStripes and Kasey Woleben, Founder and Sophia Zilber, Board Member will represent Cure Mito Foundation. https://youtu.be/2Q5kWcP5zFg **Resource Categories:** Research **Resource Type:** Expert Series --- ### [The Mito Cocktail Revisited](https://www.mitoaction.org/resources/mitococktail/) **Published:** October 11, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction and Acton Pharmacy’s Clinical Pharmacist, Ted Toufas as we revisit and provide the latest updates about the mito cocktail! The mito cocktail is one of the front-line treatment approaches to mitochondrial disease and uses a combination, unique to each patient based on symptoms and diagnosis, of vitamins and supplements such as Coenzyme Q10, B-vitamins, L-Carnitine, Creatine, and Alpha Lipoic Acid. https://youtu.be/tTc-yzCIKUI **Resource Categories:** Treatments **Resource Type:** Expert Series --- ### [Whole genome sequencing with comprehensive re-analysis in undiagnosed or unclear causes with mitochondrial dysfunction: How this can lead to improved diagnosis, treatment, and clinical outcomes.](https://www.mitoaction.org/resources/genome-sequencing/) **Published:** November 5, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction and Dr. Richard Boles for our November Mito Expert Series presentation titled: *Whole genome sequencing with comprehensive re-analysis in undiagnosed or unclear causes with mitochondrial dysfunction: How this can lead to improved diagnosis, treatment, and clinical outcomes.* Dr. Boles will talk with us about the Neurabilities NeuroGenomics Program and how we can make exact diagnoses using whole genome sequencing, translate that into treatments, and improve clinical outcomes. He will also share information with us about the NeuroNeeds product line. https://youtu.be/1R3DqNDkjz8 **Resource Categories:** Diagnosis **Resource Type:** Expert Series --- ### [The Mito Disease Drug Development Journey](https://www.mitoaction.org/resources/the-mito-disease-drug-development-journey/) **Published:** December 3, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join Dr. Matt Klein from [PTC Therapeutics](http://www.ptcbio.com) , MitoAction and Cure Mito for an exclusive webinar discussing the history of clinical research in Leigh Syndrome, the evolution of PTC-743 and the MIT-E Study! https://youtu.be/czyl1IbiHJc **Resource Categories:** Clinical Trials **Resource Type:** Expert Series --- ### [2022 Mito Town Meeting](https://www.mitoaction.org/resources/2022-town-meeting/) **Published:** December 21, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The annual mito town meeting is our way of kicking off the new year by sharing all that we have in store for the next 12 months! We will hear from organizations and companies around the globe that have special opportunities, programs and projects for patients and families affected by mitochondrial disease. https://youtu.be/J5LCHf0kkWg **Resource Categories:** Town Hall Meetings **Resource Type:** Expert Series --- ### [Sick Day & Emergency Protocols: Helpful & Potentially Harmful](https://www.mitoaction.org/resources/protocols/) **Published:** February 4, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction and Dr. Mark Korson, VMP Genetics, as he discusses sick days, navigating the ER as a patient, and the importance/challenges of protocol letters within the mitochondrial disease community. https://youtu.be/7FSpEUKINs8 **Resource Categories:** Advocacy, Day-to-Day with Mito **Resource Type:** Expert Series --- ### [MELAS Spectrum Disorders and Sonlicromanol: Progress Update](https://www.mitoaction.org/resources/melasupdate/) **Published:** February 16, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction and Dr. Jan Smeitink, CEO of Khondrion for our our March Expert Series presentation. MELAS spectrum (m.3243A>G) disorders belong to the most frequently encountered group of primary mitochondrial diseases with an unmet medical need for treatment development. Following an introduction of the clinical disease spectrum Dr. Smeitink will discuss the development and state-of-art of Khondrion’s lead product sonlicromanol. https://youtu.be/-LhBgXTbRVY **Resource Categories:** Clinical Trials, Treatments **Resource Type:** Expert Series --- ### [CDC New Opioid Guideline – What This Means for the Mito Community](https://www.mitoaction.org/resources/pain/) **Published:** April 1, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Learn about the new draft CDC Opioid Guideline, how it impacts the mito community and how you can raise your voice to address important topics still to be decided by the CDC. https://youtu.be/mTcJOlEyGow **Resource Categories:** Advocacy **Resource Type:** Expert Series --- ### [Lessons Learned from the COVID-19 Pandemic in Children with Disorders of Mitochondrial Metabolism](https://www.mitoaction.org/resources/covidlessons/) **Published:** April 8, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The impact of the COVID-19 pandemic on medically fragile populations, who are at higher risk of severe illness and sequelae, has not been well characterized. Viral infection is a major cause of morbidity in children with mitochondrial disease (MtD), and the COVID-19 pandemic represents an opportunity to understand host-pathogen interactions. This talk will summarize a number of recent research efforts to understand the impact of COVID-19 on the mitochondrial community. https://youtu.be/ppW7f1G_ZOQ **Resource Categories:** Day-to-Day with Mito **Resource Type:** Expert Series --- ### [The Menstrual Cycle as a Vital Sign in Navigating Rare Disease](https://www.mitoaction.org/resources/vitalsign/) **Published:** May 6, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction and board-certified family physician and Adjunct Associate professor of medicine at Georgetown University, Dr. Marguerite Duane, to explore the impact of the female menstrual cycle as a predictor in rare disease and improved healthcare outcomes. An often overlooked vital, understanding the female cycle can also help us understand the evolution of rare disease symptoms. https://youtu.be/G80OUaUZnkA **Resource Categories:** Day-to-Day with Mito **Resource Type:** Expert Series --- ### [7 Simple Strategies for Sibling Support](https://www.mitoaction.org/resources/siblingsupport/) **Published:** June 17, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Siblings of children with disabilities play important roles in their families, and often experience similar concerns and opportunities as parents. This session will present some common issues that siblings experience and share seven simple ways that parents and providers can help minimize sibling concerns and maximize opportunities to build close bonds with siblings. https://youtu.be/1QuZeMBXPgg **Resource Categories:** Caregivers & Family **Resource Type:** Expert Series --- ### [The In's and Out's of the CHOP Mito Clinic](https://www.mitoaction.org/resources/the-ins-and-outs-of-the-chop-mito-clinic/) **Published:** July 30, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Mitochondrial Medicine at Children’s Hospital of Philadelphia (CHOP) is emerging as the premiere center in the world for multidisciplinary clinical care, advanced diagnostics and therapies, and individualized basic, translational, and clinical research programs dedicated to improving the health of patients of all ages living with mitochondrial disease. The program is part of the [Division of Human Genetics](https://www.chop.edu/centers-programs/division-human-genetics). The Frontier Programs are unique, cutting-edge programs that will forge important new discoveries, deliver novel therapies, and help children and adults thrive. https://youtu.be/XMymnggDCK8 **Resource Categories:** Day-to-Day with Mito **Resource Type:** Expert Series --- ### [Navigating the Financial Minefield of Genetic Testing](https://www.mitoaction.org/resources/navigating-the-financial-minefield-of-genetic-testing/) **Published:** September 26, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") There are so many misunderstandings and misconceptions of genetic testing. Join Dave Keane as he clarifies these issues, and provides tools to empower patients to participate in their care from a financial perspective. His objective will be to provide a clear and concise breakdown of appropriate testing for Mito families seeking a diagnosis, while keeping their out of pocket costs as low as possible. https://www.youtube.com/watch?v=-F1WrvMuJTs&list=PLTrGsiiotyLenad98LVB3ARIjN10VlVgd&index=44 **Resource Type:** Expert Series --- ### [Transition Tips for Patients and Parents](https://www.mitoaction.org/resources/transition-tips-for-patients-and-parents/) **Published:** October 4, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join Dr. Jordan Kemere as she discusses different components of healthcare transition including finding adult physicians, insurance changes, and transitioning to adult life. She will offer practical tips to parents and caregivers to start working on transition even at a young age. We will have time for questions at the end. https://youtu.be/eUUtFGOH5tA **Resource Categories:** Transitioning from Child to Adult Care **Resource Type:** Expert Series --- ### [Grief and Mito](https://www.mitoaction.org/resources/grief-and-mito/) **Published:** November 23, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The only thing universal about grief is that it’s universal, something we’ll all experience at some point in our lives. It’s messy, hard, non-linear, and while it may change, grief is never ending. The complexities of being a parent, caregiver, or patient in the mitochondrial disease community adds many layers that impact the grieving process. Join us as chaplain and author Becky Sansbury leads us in a discussion with MitoAction Board Member, Jessica Fein and Adam Johnson, about the different kinds of grief we experience throughout the mito journey. https://youtu.be/SYto_hb2DUM **Resource Categories:** Grief **Resource Type:** Expert Series --- ### [Q&A with Compounding Pharmacists](https://www.mitoaction.org/resources/questions-and-answers-with-compounding-pharmacists/) **Published:** April 5, 2010 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") One of the front-line treatment approaches to mitochondrial disease is the use of vitamins and supplements such as Coenzyme Q10, B-vitamins, L-Carnitine, Creatine and Alpha Lipoic Acid. These vitamins and supplements are unique to each patient based on symptoms and diagnosis. Compounding pharmacists Saad Dinno, RPh, and Dr. Virginia Tawa, PharmD, from [Acton Pharmacy](http://www.actonpharmacy.com/) answer everything you wanted to know about the ingredients which make up the mysterious “Mito Cocktail.” - What is a compounding pharmacist? - How do ingredients in the Mito cocktail different from a compounding pharmacist than an over-the-counter source? - What are the side effects of the vitamins & supplements used to support adults and children with mitochondrial disease? - Which vitamins and supplements are most commonly included in a treatment regimen? **Resource Categories:** Mitochondrial Medicine Society (MMS), Treatments **Resource Type:** Expert Series --- ### [Medical Ethics and Patient Rights](https://www.mitoaction.org/resources/mitoaction-medical-ethics-and-patient-rights/) **Published:** April 12, 2014 **Author:** Russell Weller **Resource Categories:** Advocacy **Resource Type:** Expert Series --- ### [Mito-Autism Q&A and Parent/Patient](https://www.mitoaction.org/resources/mito-autism-qa-and-parent-patient/) **Published:** October 13, 2015 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") “Parent/Patient Discussion of Mitochondrial Toxicity” by MitoAction. **Resource Categories:** Autism **Resource Type:** Expert Series --- ### [Mito-autism support group call and discussion of PANDAS](https://www.mitoaction.org/resources/mito-autism-support-group-call-and-discussion-of-pandas/) **Published:** January 17, 2017 **Author:** Russell Weller **Resource Categories:** Autism, PANDAS **Resource Type:** Expert Series --- ### [Interview with Cristy Balcells](https://www.mitoaction.org/resources/interview-with-cristy-balcells-september-30th-2007/) **Published:** September 30, 2007 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Interview with the Director of MitoAction.org; Cristy Balcells. **Resource Categories:** Town Hall Meetings **Resource Type:** Expert Series --- ### [Dealing with Holiday Stress](https://www.mitoaction.org/resources/meeting-holiday-stress-december-7th-2007/) **Published:** December 7, 2007 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Mitoaction discussion dealing with holiday stress and the importance of watching fluid intake. **Resource Categories:** Day-to-Day with Mito **Resource Type:** Expert Series --- ### [Can People with Mitochondrial Disease Exercise?](https://www.mitoaction.org/resources/can-people-with-mitochondrial-disease-exercise/) **Published:** January 4, 2008 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Is Exercise a New Year’s Resolution for People Affected by Mitochondrial Diseases? Join MitoAction and Margaret Klehm to learn about how you cam most effectively incorporate exercise into your daily routine. **Resource Categories:** Exercise **Resource Type:** Expert Series --- ### [Committee Chairs](https://www.mitoaction.org/resources/meeting-committee-chairs-january-28th-2008/) **Published:** January 28, 2008 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The MitoAction committee chairs met by conference call to discuss the exciting ideas and projects ahead for 2008. **Resource Categories:** Town Hall Meetings **Resource Type:** Expert Series --- ### [What you Should Know About Disability Rights](https://www.mitoaction.org/resources/meeting-disability-advocacy-february-1st-2008/) **Published:** February 1, 2008 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction in an informative and exciting discussion with disability advocate and attorney Valerie Powers Smith as she brings to light issues regarding health care insurance and how to maximize coverage (e.g., understanding your plan, how to get things covered with appropriate medical necessity documentation, and appeals). She will also discuss other disability care issues, such as Medicaid, SSI benefits and managing the disabled person’s assets/income for future and continued eligibility; as well as managing parental estate concerns with proper estate planning and special needs trusts. Guest speaker and attorney Valerie Powers Smith took patients and parents on a crash course in the area of disability law. “If I could emphasize one thing to all people with mitochondrial disease, it would be the importance of proactive planning, and understanding the basics about everything from your estate plan to your insurance benefits.” **Resource Categories:** Advocacy **Resource Type:** Expert Series --- ### [The Mito Cocktail Explained](https://www.mitoaction.org/resources/meeting-the-mito-cocktail-march-7th-2008/) **Published:** March 7, 2008 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Saad Dinno, RPh, a compounding pharmacist at [Acton Pharmacy](http://www.actonpharmacy.com/) and Dr. Virginia Tawa, PharmD, discussed the ingredients which make up the mysterious “Mito Cocktail.” **Resource Categories:** Treatments **Resource Type:** Expert Series --- ### [Dysautonomia: Body Temperature, Heart Rate, and More!](https://www.mitoaction.org/resources/meeting-dysautonomia-april-4th-2008/) **Published:** April 4, 2008 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") MitoAction welcomes Dr. David Holtzman to discuss “dysautonomia”. Dysautonomia is a failure of the autonomic nervous system to regulate certain body functions, such as heart rate, blood pressure, temperature, respiration, digestion, etc. The dysautonomia information network ([www.dinet.org](http://www.dinet.org/)) offers information about several types of dysautonomia, including POTS (postural orthostatic tachycardia syndrome). Experienced by many people with mitochondrial disease, POTS is basically a dramatic increase in heart rate upon standing, and may result in dizziness, nausea, and other uncomfortable symptoms. Many adults and children with mitochondrial disorders experience such symptoms related to dysregulation of the autonomic nervous system. Symptoms may be puzzling, such as abnormal sweating or body temperatures, or may affect quality of life. For some people, constant nausea, dizziness, gut cramping, etc. is extraordinarily challenging. Warmer temperatures and weather changes in the spring may prompt temperature regulation difficulties for people with Mito. Often parents of children with mitochondrial disorders and adults living with the disease may not recognize that the symptoms could be related to dysautonomia. **Resource Categories:** Dysautonomia **Resource Type:** Expert Series --- ### [Cool Ideas for Adults and Kids with Heat Intolerance](https://www.mitoaction.org/resources/meeting-heat-intolerance-may-2nd-2008/) **Published:** May 2, 2008 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") MitoAction asked Maggie Orr, RN MSN EdM, Medical Advisory Board Member to join us to collaborate about heat intolerance and its causes. We will discuss: - What is heat intolerance, dysautonomia? - Why is it such an important issue for people with mitochondrial disease? **Resource Categories:** Heat Intolerance **Resource Type:** Expert Series --- ### [Multiple Specialists](https://www.mitoaction.org/resources/meeting-multiple-specialists-june-6th-2008/) **Published:** June 6, 2008 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") MitoAction meeting discussing multiple specialists **Resource Categories:** Care Management **Resource Type:** Expert Series --- ### [Pain](https://www.mitoaction.org/resources/meeting-pain-july-11-2008/) **Published:** July 11, 2008 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") MitoAction welcomed Dr. Irina Anselm, pediatric neurologist and head of the mitochondrial disease clinic at Children’s Hospital Boston to discuss the topic of pain for patients with mitochondrial disease at our monthly international teleconference. **Resource Categories:** Symptoms **Resource Type:** Expert Series --- ### [Drug Trial Begins Targeting Mitochondrial Diseases](https://www.mitoaction.org/resources/drug-trial-begins-targeting-mitochondrial-diseases/) **Published:** July 15, 2008 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Exclusive Interview with Dr. Guy Miller, CEO of Edison Pharma. Is there hope for a cure for Mitochondrial Disease? Perhaps the answer is closer than we thought. On July 15, 2008 Edison Pharma and partner Penwest Pharmaceuticals announced that A0001, an “improved” variant of Coenzyme Q10 (CoQ10), has entered Phase 1 clinical development with healthy volunteers. Edison predicts trials in patients with inherited mitochondrial disease will begin in 2009. **Resource Categories:** Clinical Trials **Resource Type:** Expert Series --- ### [Mitochondria: The BIG Picture](https://www.mitoaction.org/resources/mitochondria-the-big-picture/) **Published:** September 5, 2008 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Westphal will discuss **“Mitochondria: The Big Picture”**, highlighting recent advances in understanding the role of [mitochondrial function and diseases of aging](http://sirtrispharma.com/pdfs/Fortune.pdf), such as Type 2 diabetes, Alzheimer’s, Parkinson’s and cancer. **Resource Categories:** Understanding Mito **Resource Type:** Expert Series --- ### [The Dosing Debate: Coq10 and Creatine](https://www.mitoaction.org/resources/meeting-coq10-and-creatine-aug-1-2008/) **Published:** September 8, 2008 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join us this month with Dr. Fran Kendall from Emory University Department of Human Genetics as we dig deeper into confusion surrounding two components of the “Mito Cocktail”: Coenzyme Q10 and Creatine. A long-time advocate and clinician for mitochondrial disease patients, Dr. Kendall began the Mitochondrial Disorders Program at Boston Children’s Hospital 18 years ago. Since that time, she has been involved in direct patient care as well as diagnostics and biochemical genetics research and currently follows patients through her Atlanta practice. **Resource Categories:** Treatments **Resource Type:** Expert Series --- ### [Tummy Troubles](https://www.mitoaction.org/resources/october-mito-meeting-tummy-troubles/) **Published:** October 3, 2008 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") MITO Meeting: MONTHLY INTERNATIONAL TELECONFERENCE OUTREACH Join us this month with Dr. Alex Flores, Chief of Pediatric Gastroenterology and Nutrition, Floating Hospital for Children at Tufts Medical Center, and an Associate Professor at Tufts University School of Medicine in Boston, MA. Dr. Flores works closely with Dr. Mark Korson to support the special group of patients with mitochondrial disease and a dominant GI dysfunction as part of their disease symptoms. Dr. Flores is board certified in Pediatric Gastroenterology and Pediatrics. In addition to developing the LAPEG procedure, Dr. Flores’ specialties include GI motility disorders, and general pediatric gastroenterology. Dr. Flores will share his perspective on the most common GI issues for children and adults affected by mitochondrial disease. - What are some possible causes of the symptoms? - How is dysmotility related to mitochondrial function? - Does autonomic dysfunction play a role? - What are the recommendations and supportive treatments for these GI issues? This MitoAction podcast summary introduces Dr. Alex Flores, a pediatric gastroenterologist at Tufts Floating Hospital for Children. He discusses the specific issues, causes, symptoms, and solutions for children with GI motility problems. This podcast summary also includes questions posed by listeners. **Resource Categories:** Nutrition **Resource Type:** Expert Series --- ### [Teen Interview with Reed](https://www.mitoaction.org/resources/teen-interview-with-reed/) **Published:** October 16, 2008 **Author:** Russell Weller **Resource Categories:** Patient Stories **Resource Type:** Expert Series --- ### [Teen Interview with Morgan](https://www.mitoaction.org/resources/teen-interview-with-morgan/) **Published:** October 16, 2008 **Author:** Russell Weller **Resource Categories:** Patient Stories **Resource Type:** Expert Series --- ### [Teen Interview with Donovan](https://www.mitoaction.org/resources/teen-interview-with-donovan/) **Published:** October 16, 2008 **Author:** Russell Weller **Resource Categories:** Patient Stories **Resource Type:** Expert Series --- ### [Teen Interview with Kristin](https://www.mitoaction.org/resources/teen-interview-with-kristin/) **Published:** October 16, 2008 **Author:** Russell Weller **Resource Categories:** Patient Stories **Resource Type:** Expert Series --- ### [Teen Interview with Annalise](https://www.mitoaction.org/resources/teen-interview-with-annalise/) **Published:** October 16, 2008 **Author:** Russell Weller **Resource Categories:** Patient Stories **Resource Type:** Expert Series --- ### [Teen Interview with Harrison](https://www.mitoaction.org/resources/teen-interview-with-harrison/) **Published:** October 23, 2008 **Author:** Russell Weller **Resource Categories:** Patient Stories **Resource Type:** Expert Series --- ### [Teen Interview with Olivia](https://www.mitoaction.org/resources/teen-interview-with-olivia/) **Published:** October 23, 2008 **Author:** Russell Weller **Resource Categories:** Patient Stories **Resource Type:** Expert Series --- ### ["Thinking" About Mito: Neuropsychological Problems in Mitochondrial Disease](https://www.mitoaction.org/resources/thinking-about-mito-neuropsychological-problems-in-mitochondrial-disease/) **Published:** November 7, 2008 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") MITO Meeting: MONTHLY INTERNATIONAL TELECONFERENCE OUTREACH Dr. Schreiber has recently begun a research project investigating the learning and metacognitive problems commonly experienced by teens and young adults who have mitochondrial disease. She is motivated to better understand the difficulty that mito patients have with “executive function”, a series of processes in the brain that are necessary for planning, organization, abstract thinking, troubleshooting, strategizing, etc. Specifically, Dr. Schreiber hopes to help teens and young adults improve these areas in order to have more success with life transitions, such as going to college. **Resource Categories:** Psychology **Resource Type:** Expert Series --- ### [Genetic Inheritance in Mitochondrial Disease: Fact vs. Fiction](https://www.mitoaction.org/resources/genetic-inheritance-patterns-in-mito-with-guest-speaker-katherine-sims/) **Published:** December 5, 2008 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") MITO Meeting: MONTHLY INTERNATIONAL TELECONFERENCE OUTREACH Join us with Dr. Katherine Sims from Massachusetts General Hospital as we take a closer look at understanding genetic inheritance patterns of mitochondrial disease. **Resource Categories:** Understanding Mito **Resource Type:** Expert Series --- ### [Ideas from an Occupational Therapist](https://www.mitoaction.org/resources/ideas-from-an-occupational-therapist-with-speaker-susan-orloff-otr-l/) **Published:** January 9, 2009 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join us this month with one of Atlanta’s most honored occupational therapists, Susan Orloff, OTR/L. Susan is owner of Children’s Special Services and has over 30 years experience helping children in both schools and the clinical setting. Susan brings fresh perspective and ideas to help adults AND children with mitochondrial disease through her hands-on experiences. [Read Susan’s article on “Understanding the Energy Connection”.](https://www.mitoaction.org/wp-content/uploads/2019/10/Article-Understanding_mitochondrial_sensory_issues.pdf) Susan shares some of her perspective about the frustration people with mitochondrial disease may feel. She says, “The pessimistic view of life in the early part of the last century seems very close to what some children are probably feeling about their daily life in school. It is anxiety-provoking and tiresome to go to a place everyday where, no matter how hard you may try – *you fail*. **But it doesn’t have to be this way.** Occupational therapy is a treatment that is medically based to provide habilitation and rehabilitation to individuals experiencing difficulties in daily life functions. With children, this includes–but is not limited to–assistance with the attainment of age appropriate motor and visual perceptual abilities. The abilities include both academic and social skills required for life success.” Susan hopes to offer some new ideas to adults and children who face fatigue, muscle weakness, and frustration due to their mitochondrial disorder. Susan is the author of Learning Re-Enabled and has won many awards for her outstanding contribution to the disability community. **Resource Categories:** Occupational Therapy **Resource Type:** Expert Series --- ### [MitoAction Interview with Jamie Emory](https://www.mitoaction.org/resources/mitoaction-interview-with-jamie-emory/) **Published:** February 25, 2009 **Author:** Russell Weller **Resource Categories:** Patient Stories **Resource Type:** Expert Series --- ### [Autism and Mitochondrial Disorders: How Much Do We Really Know?](https://www.mitoaction.org/resources/autism-and-mitochondrial-disease/) **Published:** February 25, 2009 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The possible relationship between metabolic disorders, elevated lactic acid levels, and features of autism spectrum disorder have been described in the medical literature since the early 90’s. In fact, much research exploring the correlation between autism or ASD (autism spectrum disorder) and mitochondrial dysfunction has been published throughout the last decade, long before the Hannah Poling case (March 2008) brought the association to the public’s attention. Since the US Vaccine Compensation Board determined, based on Hannah Poling’s case, that “vaccines significantly aggravated an underlying mitochondrial disorder causing brain damage with features of autism spectrum disorder”, a whirlwind of confusion amongst parents of affected children has occurred. Are vaccines safe? Do children with mitochondrial disease have a potential to develop autism, or do children with autism have an underlying mitochondrial disorder? Is mitochondrial dysfunction the “cause” of autism or behavior compatible with ASD? What do we really know and understand about the relationship between autism spectrum disorders and mitochondrial cytopathies? Join us as Dr. David Holtzman from Massachusetts General Hospital shares his perspective and research on the autism-mitochondrial disease debate. **Resource Categories:** Autism **Resource Type:** Expert Series --- ### [MitoAction Interview with Stephen](https://www.mitoaction.org/resources/mitoaction-interview-with-stephen/) **Published:** March 2, 2009 **Author:** Russell Weller **Resource Categories:** Patient Stories **Resource Type:** Expert Series --- ### [Special Needs Planning](https://www.mitoaction.org/resources/special-needs-planning-workshop-with-jack-raycroft/) **Published:** March 9, 2009 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Planning for your future with Mito… a workshop for parents & adult patients *Monthly International Teleconference Outreach* “It feels like each day is all I can handle – how can I possibly plan for the *future*??” Living every day with mitochondrial disease as an adult patient or a parent caring for an affected child can be completely consuming and overwhelming. Many of us forget or put off thinking about the future, especially when the future feels so uncertain. Jack Raycroft joins MitoAction with a compassionate perspective on simple steps you can take today to help ensure that your family’s future is more secure, giving us a little more peace of mind while we continue to live for today with Mito. Each month, MitoAction holds a toll-free, international teleconference to address topics important to the Mito community. Join us to discuss “LIVING TODAY WITH MITO & PLANNING FOR THE FUTURE” with guest speaker Jack Raycroft from Baystate Financial Services. **Resource Categories:** Day-to-Day with Mito **Resource Type:** Expert Series --- ### [Palliative Care and Hospice](https://www.mitoaction.org/resources/palliative-care-and-hospice/) **Published:** April 3, 2009 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Pat O’Malley from Massachusetts General Hospital talks about long-term care and quality of life support for adults and children with mitochondrial disease. *This month’s meeting is held in loving memory of Christopher A. Clark, whose family remained dedicated to helping him have the best quality of life possible every day.* **Resource Categories:** Care Management **Resource Type:** Expert Series --- ### [Drug Toxicity and Mitochondria](https://www.mitoaction.org/resources/drug-toxicity-and-mitochondria/) **Published:** May 1, 2009 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") MitoAction is excited to welcome Dr. James Dykens, Director of Investigative Cellular Toxicity at Pfizer Drug Safety Research & Development and author of the 2008 book [“Drug Induced Mitochondrial Dysfunction”](http://www.amazon.com/Drug-Induced-Mitochondrial-Dysfunction-James-Dykens/dp/0470111313/ref=sr_1_4?ie=UTF8&s=books&qid=1240382923&sr=8-4). Dr. Dykens shares with us today his perspectives on the relationship of mitochondrial function to overall health and discusses the potential effects of potential drug-induced mitochondrial toxicity. As the relationship between mitochondrial function, aging, disease and health gain traction, the importance of mitochondrial function and cellular health is in the spotlight. Dr. Dykens also discusses drug effects in patients with mitochondrial disease as well as the idea of toxicity related mitochondrial impairment to muscles, organs, and the nervous system. Dr. Dykens makes it clear that the opinions expressed here are his alone, not those of Pfizer. **Resource Categories:** Treatments **Resource Type:** Expert Series --- ### [Medical Foods for Mito](https://www.mitoaction.org/resources/medical-foods-for-mito/) **Published:** July 10, 2009 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Solace Nutrition & Medical Foods joined MitoAction to discuss: - What are medical foods, and how are they regulated? - What is the difference between medical foods, supplements & drugs? - [How do medical foods interact with the electron transport chain in the mitochondria?](http://www.youtube.com/watch?v=6_2oN1oTK-g "How Energy is Made Video by MitoAction") (Click to see the video) - How do medical foods like coenzyme q10, creatine monohydrate, & D-ribose improve health and energy in people with mitochondrial disease? #### Topics of this discussion include: - What are CoQ10, ubiquinol & Cyto-Q? - *How do they work?* - *What is creatine monohydrate & is it helpful?* - *What is Cytose & is it helpful?* **Resource Categories:** Nutrition **Resource Type:** Expert Series --- ### [To Work or Not to Work](https://www.mitoaction.org/resources/to-work-or-not-to-work/) **Published:** August 10, 2009 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") To work or not to work…that is the question Many adults with mitochondrial disease face a difficult decision about how to financially support themselves while balancing the energy demands and potential health toll of having a job. Working also gives many people more than just a paycheck; it can be a way to find gratification, and may be an important part of a person’s identity. When faced with the challenging symptoms of mitochondrial disease, many things, including if and how to keep a job, come into question. Join us this month with guest speaker Lee Rachel Jurman. All are welcome! **Resource Categories:** Day-to-Day with Mito **Resource Type:** Expert Series --- ### [Munchausens by Proxy Accusations in Children with Mitochondrial Disease](https://www.mitoaction.org/resources/munchausens-by-proxy-accusations-in-children-with-mitochondrial-disease/) **Published:** September 8, 2009 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This topic is dramatically important to the parents of children with complex gastrointestinal presentations of mitochondrial disease. MitoAction brings this topic to our Mito community today in response to the increasing number of accusations of child abuse and Munchausen by proxy that have been placed upon many parents of children struggling from the devastating symptoms of mitochondrial disease. Join us this month as we celebrate “International Mitochondrial Disease Awareness Week” across the globe and join efforts to improve awareness, acceptance and understanding of mitochondrial disease and the impact that the condition has on children and adults. Dr. Flores will discuss “Munchausen by proxy and the intestinal failure patient” and take a candid look at cases where children with mitochondrial disease and intestinal failure caused the family’s ability to care for the child to be called into question. Dr. Flores will address the challenges that face both physicians and parents when caring for these patients. **Resource Categories:** Medical Child Abuse **Resource Type:** Expert Series --- ### [Coping with Mitochondrial Disease](https://www.mitoaction.org/resources/coping-with-mitochondrial-disease/) **Published:** October 5, 2009 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") MitoAction welcomes psychologist Carole Slipowitz PhD and Tufts Metabolism clinic nurse coordinator Maggie Orr RN M.Ed to discuss the challenges of dealing with a diagnosis of mitochondrial disease. How do you cope with the unpredictable, invisible disease? Any chronic illness can be overwhelming – for a child, a family, or an adult with the condition. However, due to the unpredictability, complexity of symptoms, and uncertain prognosis, a diagnosis of mitochondrial disease is especially stressful…and exhausting. **Resource Categories:** Psychology **Resource Type:** Expert Series --- ### [Update on Mito Treatment Approaches](https://www.mitoaction.org/resources/update-on-mito-treatment-approaches/) **Published:** November 6, 2009 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Learn about current treatment options. **Resource Categories:** Treatments **Resource Type:** Expert Series --- ### [Overwhelmed No More - Tips for Enjoying the Holidays!](https://www.mitoaction.org/resources/overwhelmed-no-more/) **Published:** December 4, 2009 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") #### Are you OVERWHELMED? This time of year, we look forward to the joy, excitement, and fun of the holiday season: Thanksgiving, Hanukkah, Christmas, Kwanzaa, and the New Year are all occasions to rejoice and celebrate with family and friends. But if you’re like most adult patients or families of children with mitochondrial disease, the holidays can get complicated – or even overwhelming. With the holidays comes more than the usual amount of juggling, multitasking, planning, making, going, doing the to-do list grows fast, and it seems to get longer every year. For many Mito patients, caregivers and families, the expectations of others add extraordinary stress during this season. For adult patients, spouses, and parents of children with Mito, being maxed out on both time and energy is already your normal state. Add on all the things we do – or want to do- during the holidays, and you’ve got a recipe for overload. This month, MitoAction invited author and special guest Joan Celebi as she shares with us some ways to not just “survive” the holidays this year — but be invigorated, refreshed, and renewed by them. **Resource Categories:** Day-to-Day with Mito **Resource Type:** Expert Series --- ### [Psychiatric Disorders, Meds and Mito](https://www.mitoaction.org/resources/dr-marcus-favero-speaks-on-psychiatric-disorders-meds-and-mito/) **Published:** February 5, 2010 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Marcus Favero speaking on Psychiatric Disorders, Medications & Mitochondrial Disease. Depression, schizophrenia, bipolar disease, and other psychiatric diseases – what is the connection for patients with mitochondrial disease? **Resource Categories:** Psychology **Resource Type:** Expert Series --- ### [Becoming a Great Advocate: Advice for Complex Patients and Families](https://www.mitoaction.org/resources/becoming-a-great-advocate-advice-for-complex-patients-and-families-with-mark-korson-md-and-maggie-orr-rn/) **Published:** April 5, 2010 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Becoming a great advocate: advice for complex patients and families, with Mark Korson MD and Maggie Orr RN. Adult patients, caregivers, parents of affected children – all of us face the same challenge. How do we get our team on board? How do we get the help we need from doctors, teachers, nurses, therapists? How do we find ways to validate symptoms that are slippery or difficult to identify? And how do we do this in a way that brings positive results and cooperation instead of provoking stress and hard feelings? **Resource Categories:** Advocacy **Resource Type:** Expert Series --- ### [Nutrition for Mitochondrial Disease Patients](https://www.mitoaction.org/resources/nutrition-for-mitochondrial-disease-patients/) **Published:** May 7, 2010 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join us this month to learn more about the challenges facing kids and adults with Mito when it comes to nutrition. What are the goals for Mito patients, and how are they different from nutrition goals for the typical population? **Resource Categories:** Nutrition **Resource Type:** Expert Series --- ### [Mitochondrial Toxicity](https://www.mitoaction.org/resources/mitochondrial-toxicity/) **Published:** June 4, 2010 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join us this month to take a big picture look at agents that are toxic or potentially harmful to the mitochondria. Dr. Katherine Sims from Massachusetts General Hospital shares information important to everyone concerned about their health, and explains why recognizing potentially toxic agents – from medications to environmental factors – can be especially worrisome and detrimental for children and adults who have a mitochondrial disorder. **Resource Categories:** Treatments **Resource Type:** Expert Series --- ### [Muscle Biopsy Testing with Dr Fran Kendall](https://www.mitoaction.org/resources/muscle-biopsy-testing-with-dr-fran-kendall/) **Published:** July 9, 2010 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") For many years, muscle biopsy has been considered the “best” way to obtain an accurate diagnosis of mitochondrial disease. Muscle biopsy is costly, it is invasive, and is occasionally controversial with results that can be difficult for patients and families to understand. Will there ever be an alternative to muscle biopsy testing for children and adults with suspected mitochondrial disorders? When does someone need a muscle biopsy? Why (and when) is a muscle biopsy necessary? [Dr. Fran Kendall from Virtual Medical Practice](http://www.virtualmdpractice.com/) in Atlanta, Georgia updates us on the latest approaches to testing for mitochondrial disease. - Muscle biopsies – why are they done? - How do muscle biopsies help with a diagnosis? - Fresh vs. frozen – is one better? - Cost factors for Mito muscle testing - Emerging trends in enzymology: buccal swab studies - The need to identify causative Mito genes. **Resource Categories:** Diagnosis **Resource Type:** Expert Series --- ### [Hyperbaric Oxygen Therapy use in Mito Patients](https://www.mitoaction.org/resources/use-of-hyperbaric-oxygen-therapy-for-mitochondrial-disease-patients/) **Published:** August 6, 2010 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Bruce Cohen from the Cleveland Clinic in Ohio discusses his perspective on the use of hyperbaric oxygen therapy, also known as HBOT, for people with mitochondrial disease. Hyperbaric oxygen therapy is the use of 100% oxygen at a level higher than the atmosphere. HBOT is controversial, and has long been used to treat some conditions, such as carbon monoxide poisoning, burn inuries, and decompression sickness. However, some studies propose that HBOT may play a positive role with other conditions, such as autism, cerebral palsy, brain injury, multiple sclerosis and others. Some patients and parents ask, “Is hyperbaric oxygen therapy safe for a person with the diagnosis of mitochondrial disease?” **Resource Categories:** Treatments **Resource Type:** Expert Series --- ### [Caring for the Whole Patient](https://www.mitoaction.org/resources/caring-for-the-whole-patient/) **Published:** September 3, 2010 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") For someone who lives with mitochondrial disease, understanding the “big picture” is important. Dr. Koenig will explore the importance of caring for the whole patient when managing mitochondrial disease. How does each organ system affect others when looking at the “whole” person? For example, can treating anemia improve sleep? Can appropriate management of epilepsy improve a child’s ability to learn and attend school? Naturally, the symptoms and issues related to one’s mitochondrial disease diagnosis are not isolated to one part of the body, and consideration of the impact that these symptoms have on the “whole person” is important. **Resource Categories:** Care Management **Resource Type:** Expert Series --- ### [Mito Awareness Radio Clip](https://www.mitoaction.org/resources/mito-awareness-radio-clip/) **Published:** September 21, 2010 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A mito awareness week radio clip that you can submit to your local radio stations. **Resource Categories:** Awareness **Resource Type:** Expert Series --- ### [Support for Siblings of Kids with Mitochondrial Disease](https://www.mitoaction.org/resources/support-for-siblings-of-kids-with-mitochondrial-disease/) **Published:** October 1, 2010 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Supporting the brothers and sisters of kids with special needs Our special guest, Shellie Léger, MSW MBA from Massachusetts General Hospital digs into the issues that affect the other members of the family. Shellie is a leader of the internationally acclaimed “Sibshops” program and brings both her experience and her dedication to the table to discuss how to help provide healthy balance for the siblings of kids who have Mito. *“Sibshops are lively, pedal-to-the-metal celebrations of the many contributions made by brothers and sisters of kids with special needs. Sibshops acknowledge that being the brother or sister of a person with special needs is for some a good thing, others a not-so- good thing, and for many somewhere in between. They reflect a belief that brothers and sisters have much to offer one another–if they are given a chance.”* Learn from Shellie what parents can do to support the brothers and sisters of chronically ill kids. **Resource Categories:** Caregivers & Family **Resource Type:** Expert Series --- ### [Exercise](https://www.mitoaction.org/resources/research-and-realities-of-exercise/) **Published:** November 5, 2010 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") How can children, teens and adults with mitochondrial disease EXERCISE, especially if fatigue and exercise intolerance are hallmark symptoms of the disease? Metabolic Nurse Educator, Margaret O’Riley, from Vancouver, British Columbia shares about the research – and practical solutions – surrounding exercise and mitochondrial disease. This discussion will dig into questions that are relevant to children, teens and adult patients, such as: - Why or why not should my child or I exercise? - How? - What does the research say? - What type of exercise is best? **Resource Categories:** Exercise **Resource Type:** Expert Series --- ### [Interview with Al Muto from Pine Pharmacy](https://www.mitoaction.org/resources/interview-with-al-muto-from-pine-pharmacy/) **Published:** November 5, 2010 **Author:** Russell Weller **Resource Categories:** Treatments **Resource Type:** Expert Series --- ### [Mitochondrial Function Disorders](https://www.mitoaction.org/resources/mitochondrial-function-disorders/) **Published:** December 3, 2010 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") How are cyclic vomiting syndrome, depression, migraines, chronic pain and more related to mitochondrial function? Dr. Richard Boles from Children’s Hospital of Los Angeles discusses the research surrounding functional disorders and mitochondrial disease. This discussion will dig into questions that are relevant to patients, parents and family members, such as: - What does the term “functional disorder” mean? - Why is there often a history of chronic pain or illness in families with mitochondrial disease? - How are mitochondrial functional disorders and symptoms inherited, and how do genetics relate to chronic symptoms of pain, fatigue, vomiting and depression? - How does autism, ADHD, and SIDS relate to mitochondrial dysfunction? - Are there any differences in treatment approaches for these conditions in families who have a mitochondrial disease diagnosis already? **Resource Categories:** Understanding Mito **Resource Type:** Expert Series --- ### [Genetics of Mitochondrial Disease](https://www.mitoaction.org/resources/genetics-of-mitochondrial-disease/) **Published:** February 4, 2011 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Spotlight on Genetics of Mitochondrial Disease: How Mito is inherited, nDNA vs mtDNA, family risk and more. Nancy Slate, MS, discusses “Genetics of Mitochondrial Disease”. We’ll dig deeper into the latest explanations surrounding: - How mitochondrial diseases are inherited - How inheritance patterns may be similar and different for adult patients and for children - Understanding new testing, and peeking at emerging trends - Question & Answer session **Resource Categories:** Understanding Mito **Resource Type:** Expert Series --- ### [Mito Diagnosis and Autism](https://www.mitoaction.org/resources/mito-diagnosis-and-autism/) **Published:** February 8, 2011 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An informal discussion with Cristy Balcells on Mito diagnosis and Autism from our February 2011 Autism-Mito Support Meeting. **Resource Categories:** Autism **Resource Type:** Expert Series --- ### [Sleep Disorders](https://www.mitoaction.org/resources/sleep-disorders-with-dr-weiss/) **Published:** March 4, 2011 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") “I Can’t Sleep!” Sleep disorders: Understanding the cause, effect and treatments for people with mitochondrial disease Dr. Matthew D. Weiss, MD, FCCP, will discuss “Sleep Disorders” , and how interrupted sleep can have multiple effects on our overall health and presentation of other symptoms. We’ll dig deeper into the latest explanations surrounding: - What are sleep disorders and how are they defined and diagnosed? - Who has sleep disorders and why? - What are common causes? - How do sleep disorders affect children and adults with Mitochondrial Disorders? - What are current treatment approaches and options? **Resource Categories:** Symptoms **Resource Type:** Expert Series --- ### [IV (Venous) Use: Access and Complications](https://www.mitoaction.org/resources/mona-inocentes-discusses-iv-access/) **Published:** April 4, 2011 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Learn all about use of IV’s for hydration, nutrition and medications. When are they used? How? And what are potential complications? Mona Inocentes from[ Thrive RX ](http://www.thriverx.net/)will discuss: - Differences between 3 types of central lines: Port a Cath, PICC and Tunneled Catheters, and advantages and disadvantages of each. - Causes of common central line infections. - Brief discussion of other central line complications - Tips for minimizing complications and infections with discussion of some newer products on the market **Resource Categories:** Care Management **Resource Type:** Expert Series --- ### [Dysautonomia](https://www.mitoaction.org/resources/dysautonomia-with-dr-boles/) **Published:** May 6, 2011 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Too Hot, Too Cold, Too High, Too Low – Blame it on Dysautonomia! - Many children and adults with mitochondrial disease complain of erratic symptoms that “don’t make sense”, such as heat intolerance, erratic blood pressure, dizziness, nausea, intermittent gut dysfunction, and more. - These symptoms, while typically not life-threatening, are often the most troubling and affect a person’s everyday quality of life the most. - Dysautonomia describes an inability of the autonomic nervous system to regulate “typical” body functions, and is the cause of many of these troubling and confusing symptoms. Learn more about dysautonomia with Dr. Richard Boles from Children’s Hospital Los Angeles. - What is dysautonomia, and how does it occur? - What symptoms do Mito patients experience that may be related to dysautonomia? - Are there treatment approaches that improve symptoms of dysautonomia? - How is dysautonomia related to bigger issues, such as gastric dysmotility and POTS (postural orthostatic tachycardia syndrome)? - How can dysautonomia be serious, even lethal, in some cases? **Resource Categories:** Dysautonomia **Resource Type:** Expert Series --- ### [Service Dogs for Children and Adults with Mito](https://www.mitoaction.org/resources/service-dogs-for-children-and-adults-with-mito/) **Published:** June 3, 2011 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") How can a service dog help a child or adult patient with mitochondrial disease? Learn more and ask questions, such as: - How can service dogs help someone with mitochondrial disease? - Do service dogs only help people who are deaf? - What do service dogs do medically? - How can my family apply for a service dog and what is our responsibility? **Resource Categories:** Day-to-Day with Mito **Resource Type:** Expert Series --- ### [Mito-Autism: Information for Parents and Clinicians](https://www.mitoaction.org/resources/dr-fran-kendall-speaks-about-mito-autism/) **Published:** July 8, 2011 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Many parents and clinicians have heard about the connection between autism (including ASD and PDD) and mitochondrial dysfunction. Dr. Fran Kendall discusses: - What is classified as mitochondrial dysfunction and mitochondrial disease? - An overview of the research linking autism and mitochondrial disease - Advantages of diagnosis - Recommendations for testing **Resource Categories:** Autism **Resource Type:** Expert Series --- ### [Seizure Disorders and Epilepsy](https://www.mitoaction.org/resources/seizures-stroeks-an-dmigraines-with-dr-mary-kay-koenig/) **Published:** August 5, 2011 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Some children and adults with mitochondrial disease also have seizure disorders or epilepsy. Dr. Mary Kay Koenig from Children’s Memorial Hermann Hospital at the University of Texas Medical School at Houston discusses: - What seizure disorders are common for children and adults with mitochondrial disease? - How do “stroke-like episodes”, memory loss and other neurological issues relate to seizure disorders for people with Mito? - How are seizure disorders and epilepsy classified? - What are the treatment recommendations and special precautions for Mito patients? **Resource Categories:** Seizures, Symptoms **Resource Type:** Expert Series --- ### [Immunodeficiency Disorders and Mitochondrial Disease](https://www.mitoaction.org/resources/immunodeficiency-disorders-and-mitochondrial-disease/) **Published:** September 2, 2011 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Susan Pacheco from Memorial Hermann Texas Medical Center Department of Pediatric Allergy and Immunology will discuss: - Do people with mitochondrial disease have issues with immunity and allergies? - What are immunodeficiency disorders, and why is this important for mitochondrial disease patients? - Are treatment approaches for allergies and immunodeficiency different for Mito patients? **Resource Categories:** Immune Function **Resource Type:** Expert Series --- ### [Home Nutrition Support](https://www.mitoaction.org/resources/home-nutrition-support-with-guest-deb-pfister-from-nutrithrive/) **Published:** October 7, 2011 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Help! G-tubes, J-tubes, TPN – Where do we begin? MitoAction welcomed guest speaker and experienced home nutrition support expert Deborah Pfister from [ThriveRx](http://www.thriverx.net/). Dedicated to improving life on nutrition support, ThriveRx’s Director of Nutrition Support will help us to understand the ins and outs of enteral and parenteral nutrition. For many years she has worked with families on home nutrition programs, and she is particularly knowledgeable about the complex issues faced by those with Mitochondrial Disease. - What is a g-tube, or a j-tube? - What do “enteral and parenteral nutrition” mean? - Why do patients with mitochondrial disease sometimes need a g-tube, j-tube, enteral nutrition or TPN? - What is TPN, and can a person live without eating real food? - Are these conditions permanent, and what are the risks and potential procedures involved? - Where do we go for support to learn more? **Resource Categories:** Nutrition **Resource Type:** Expert Series --- ### [How Do I Know I Have Mito?](https://www.mitoaction.org/resources/how-do-i-know-i-have-mito/) **Published:** November 4, 2011 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Do I have Mito? Does my child have Mito? How do I know? How can I be tested? What should I do?! Join us this month with Dr. Fran Kendall from Virtual Medical Practice in Atlanta, Georgia for a discussion about testing and diagnosis, including current trends (and controversies) surrounding the process of identifying mitochondrial disorders. **Resource Categories:** Diagnosis **Resource Type:** Expert Series --- ### [2012 Mito Town Meeting](https://www.mitoaction.org/resources/2012-mito-town-meeting/) **Published:** January 6, 2012 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Everyone – parents, patients, family members and interested volunteers – is encouraged to call in and participate as we discuss important topics for the year. The agenda for this meeting is as follows: - Welcome and Introductions - New volunteer opportunities - The Marcel’s Way Family Fund - Awareness Week Initiatives - Rare Disease Day ideas - Speakers, topics and suggestions for monthly conferences - Support groups, Camps & Mito Socials - Events, including the SKR Derby Day Benefit, national walks and 5K runs, and education/awareness events. **Resource Categories:** Town Hall Meetings **Resource Type:** Expert Series --- ### [Advocating Responsibly and Communicating Effectively](https://www.mitoaction.org/resources/advocating-responsibly-and-communicating-effectively/) **Published:** February 3, 2012 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") During a time when families with children with mitochondrial disease may face accusations of medical child abuse or munchausen’s by proxy, it is incredibly important to advocate responsibly and communicate effectively. Guest speaker Mannie Taimuty-Loomis, MA, LBS and Executive Director of the [Jonah & The Whale Foundation](http://www.jtwf.org/), Inc. discusses: - What is medical child abuse? Munchausen’s by proxy? What are the criteria for these allegations? - What is mandatory reporting, who must comply, and what is the process? - What are the rights of the parents, family members and other caregivers as well as the healthcare providers when a child is suspected to be a victim of medical child abuse? - How can parents be great advocates without creating dissonance? - What are the tried and true recommendations for balancing multiple specialists and complex medical conditions? **Resource Categories:** Advocacy **Resource Type:** Expert Series --- ### [Practical Aspects of a Mitochondrial Disease Diagnosis](https://www.mitoaction.org/resources/practical-approaches-to-a-mito-diagnosis-with-dr-richard-haas/) **Published:** March 2, 2012 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Richard Haas from University of California San Diego discusses practical approaches to a Mito diagnosis: - Background and function of mitochondria, mitochondrial disease, and problems caused by mitochondrial dysfunction - Mitochondrial genetics, in brief - Classification of Mito Diseases - Difficulty in diagnosing mtDNA disease - Inherent problems in diagnosis/diagnostic approaches of both OXPHOS and mtDNA disease - Testing, in brief, including advantages and limitations of new nDNA gene sequencing - Clues to the diagnosis of mitochondrial disease for clinicians (and families) - How does one eventually arrive at a dx of Mito disease? - Why are more invasive tests (i.e. muscle biopsy) sometimes necessary? - How is the field of mitochondrial medicine changing? Are there new types of mitochondrial disease? What may the future look like for this field and for patients/families? **Resource Categories:** Diagnosis **Resource Type:** Expert Series --- ### [Interpreting Common Lab Tests for Mitochondrial Disease](https://www.mitoaction.org/resources/interpreting-labs-101-with-dr-mark-korson/) **Published:** April 2, 2012 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Mark Korson from Tufts Floating Hospital for Children gives a “crash course” in interpreting lab values! Most patients with mitochondrial disease have faced a page of test results comprised of letters and numbers that would help them understand their current illness if the information made sense. CBC, CMP, LFTs, CPK, OAA and more…join us as we figure it out! - CBC - CMP - Lactic acid - pyruvic acid - amino acids - organic amino acids - ammonia - electrolytes - glucose - bicarbonate/co2 - metabolic labs - CPK - LFTs - carnitine - TFTs: TSH, T4, T3 - cerebral folate **Resource Categories:** Care Management **Resource Type:** Expert Series --- ### [9 Tips to Ensure Your Insurer Pays Up](https://www.mitoaction.org/resources/9-tips-to-ensure-your-insurer-pays-up/) **Published:** May 4, 2012 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Frustrated with the run-around from health insurance companies? Join us this month as we discuss strategies for advocating for the diagnosis, management, and treatment of your mitochondrial disease: - Questions to ask when you receive a health insurance denial - How to write and get help with an appeal - Easy relationship building strategies to give you the advantage - Online tools and organization habits to stay on top of claims **Resource Categories:** Insurance **Resource Type:** Expert Series --- ### [Mito, Autism and Cerebral Folate Deficiency](https://www.mitoaction.org/resources/mito-autism-and-cerebral-folate-deficiency/) **Published:** June 1, 2012 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Richard Frye, MD PhD, Director of Autism Research and Associate Professor of Pediatrics at Arkansas Children’s Hospital to discuss: - Evidence for Mitochondrial Dysfunction in Autism Spectrum Disorder - Biomarkers for mitochondrial dysfunction - Importance of cerebral folate deficiency/insufficiency and the folate receptor autoantibody - How cerebral folate deficiency/insufficiency is diagnosed and treated **Resource Categories:** Autism, Cerebral Folate Deficiency **Resource Type:** Expert Series --- ### [Edison Pharma EPI-743 Clinical Trial Meeting](https://www.mitoaction.org/resources/edison-pharma-epi-743-clinical-trial-meeting/) **Published:** October 5, 2012 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Results from the Edison Pharma EPI-743 Phase 2A Leigh Syndrome Trial: An update with Dr. Guy Miller and Dr. Greg Enns **Resource Categories:** Clinical Trials **Resource Type:** Expert Series --- ### [Exercise and Physical Therapy](https://www.mitoaction.org/resources/exercise-and-physical-therapy/) **Published:** November 2, 2012 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Learn more about exercise and physical therapy options for mitochondrial disease patients. Children and adults with Mito face a tough dilemma – we hear exercise may be helpful for those with mitochondrial disease, but exercise can be painful or downright impossible due to fatigue, muscle weakness, and other symptoms. Join us with physical therapist Kim Serra to learn more. Kim has worked with mitochondrial disease patients and will share her perspective on this issue, including: - How do you create a therapy or exercise plan when there is so much variability in daily function? - How can I tell if physical therapy or exercise is safe and appropriate for me or my child? - What are the goals of physical therapy and exercise for mitochondrial disease patients? - What should we do about pain and fatigue related to exercise and therapy? - What are some resources that my physical therapist can use to help develop an appropriate plan? **Resource Categories:** Exercise **Resource Type:** Expert Series --- ### [Sick Protocol for Mito Patients with Dr. Korson](https://www.mitoaction.org/resources/sick-protocol-for-mito-patients-with-dr-korson/) **Published:** December 7, 2012 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **What should you do when you or your child is sick?** Being sick, even with a cold or a simple virus, is tough for most children and adult Mito patients. Many people with mitochondrial disease are “wiped out” when ill, and can take much longer to recover. Join us Friday December 7th, 2012 for an exciting teleconference with Dr. Mark Korson as we discuss what to do when a Mito patient is sick at home: - What signs and symptoms are cause for concern and require urgent medical support? - When should you call your doctor? What can your primary care doctor do if your specialist is not local? - What degree of and types of sickness can be managed at home? How do you know? - Important steps to take if you, your child or a family member is admitted to the hospital **Resource Categories:** Care Management **Resource Type:** Expert Series --- ### [2013 Mito Town Meeting](https://www.mitoaction.org/resources/2013-mito-town-meeting/) **Published:** January 4, 2013 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join us for the annual “Mito Town Meeting,” The annual town meeting is our way of kicking off the new year by sharing all that is planned for the year. We’ll hear from volunteers and representatives from a variety of programs and organizations. This is the meeting to attend if you want to get involved or get informed! #### 2013 MitoAction Town Meeting AGENDA 12:00-12:05 Welcome, Cristy Balcells, Director 12:05-12:10 Importance of Community, Phillip Borden, President 12:10-12:15 Camp Korey Mito Weeks, Cora Weed, Camp Korey 12:15-12:25 Events (Derby Day, Walks, Awareness Events, Genes for Jeans), Susan Stover, Events Director 12:25-12:30 EPI-743 Clinical Trial, Dr. Guy Miller, Edison Pharma 12:30-12:35 Memories Group, Maggie Orr, Medical Advisory Board 12:35-12:40 Marcel’s Way, Mary Summers, Federation for CSN 12:40-12:45 Mito 411, MaryBeth Hollinger, Volunteer 12:45-12:50 Thrive RX iThrive webinars, Melissa Pariseau RN, Thrive RX 12:50-12:55 Mito Socials; Mito Marketplace, Ginger DeShaney, Support Coordinator 12:55-1:00 UMDF Conference 2013, Cliff Gorski, UMDF 1:00-1:05 Stay in Bed Day, Vicky Spadoni, MitoCanada 1:05-1:10 CureMito Marathon, Claudia Boles, CureMito.org 1:10-1:15 Volunteer opportunities, Cristy Balcells, Director 1:15-1:30 Additional announcements and questions – all are welcome. **Resource Categories:** Town Hall Meetings **Resource Type:** Expert Series --- ### [Parents, Stress and Coping with Mitochondrial Disease](https://www.mitoaction.org/resources/parents-stress-and-coping-mitochondrial-disease/) **Published:** February 1, 2013 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") - Do you have a child with mitochondrial disease (known or suspected)? - Are you stressed? - Are you tired? - Do you feel like no one, including friends and even your own doctors, really understands what it’s like to be the parent of a child with Mito? Brenda Senger RN MA, is a nurse and parent of a young child with Mito. Her goal is to collect information in order to share the experience of parents coping with the unique stressors of having a child with mitochondrial disease, and to share those in an academic way with healthcare providers in order to help parents have better support and resources. Learn about the experience of coping for parents with kids with complex medical conditions and mitochondrial disease, what unique stressors face us as parents and families, and what the current research says about how we cope. **Resource Categories:** Day-to-Day with Mito **Resource Type:** Expert Series --- ### [Get More from Every Doctor's Appointment](https://www.mitoaction.org/resources/get-more-from-every-doctors-appointment/) **Published:** March 1, 2013 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It’s time to take charge of the many hours that we as patients and families spend in clinics, waiting rooms, hospitals, and healthcare provider offices. How can you get more out of every appointment? More importantly, how can you get what you need from those interactions? Health care is changing, for better or for worse it’s a new landscape. As a result, there are many, many changes which are forced upon healthcare providers and their patients. From changes in insurance reimbursement to productivity expectations for physicians, it’s tough for both physicians and their patients right now. Meanwhile, children and adults with mitochondrial disease live with complex illness and in most cases a long list of symptoms. We have mulitple specialists, sometimes in multiple places. We have local docs, community hospitals, university clinics, specialists, therapists, outpatient labs, inpatient labs, out-of-state Mito specialists, etc. etc. How can we stack the odds in our favor so that we, the patients and parents, get the most out of every healthcare interaction? Join us with MitoAction’s Executive Director Cristy Balcells RN MSN and Kathy Rivers MD to dig in to this topic and to hear strategy suggestions from Cristy and Kathy. Cristy and Kathy are both moms to children who live with mitochondrial disease and healthcare providers. We’ll take a look behind the scenes of what happens outside of the waiting room and how to get more from all of those hours spent in the clinic. **Resource Categories:** Care Management **Resource Type:** Expert Series --- ### [EPI-743 Leighs Syndrome Trial Update](https://www.mitoaction.org/resources/epi-743-leighs-syndrome-trial-update-april-2013/) **Published:** April 5, 2013 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An update from Edison Pharma on the Development of EPI-743 clinical trial for children with Leigh Syndrome. Topics for this call include: 1. Status on EPI-743 clinical development; 2. Status on EPI-743 US clinical trials 3. Status on EPI-743 European clinical trials **Resource Categories:** Clinical Trials **Resource Type:** Expert Series --- ### [Transitioning for Teens and Young Adults with Mitochondrial Disease](https://www.mitoaction.org/resources/transitioning-for-teens-and-young-adults-with-mitochondrial-disease/) **Published:** May 3, 2013 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join us with Dr. Hope Schreiber from Tufts Medical Center to talk about successful transitions for teens and young adults with mitochondrial disease. Based on a pilot study conducted by Dr. Schreiber and[ published in the Journal of Child Psychiatry](http://jcn.sagepub.com/content/27/12/1506.abstract) in December 2012, we will talk about attitudes, behaviors and skills that were most common in teens and young adults with mitochondrial disease facing transition to college or independence. We will also talk about tips for parents and young people in order to balance managing the disease while making the best choices for the future. THIS CALL WILL NOT BE RECORDED, so please plan to join us live. A summary will be posted online. **Resource Categories:** Transitioning from Child to Adult Care **Resource Type:** Expert Series --- ### [Interpreting Genetic Testing](https://www.mitoaction.org/resources/interpreting-genetic-testing/) **Published:** September 13, 2013 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join us with Dr. Richard Boles as we learn more about how to interpret genetic test results. The landscape today for a mitochondrial disease diagnosis is rapidly changing and now includes some genetic testing for most patients. However, many families are confused even further by the results. What is an VUS? What do the specific mutations mean? What does 30% depletion mean? Learn the nuts and bolts of interpreting today’s genetic tests from Dr. Boles in this informative discussion. **Resource Categories:** Diagnosis **Resource Type:** Expert Series --- ### [Introducing Bendavia](https://www.mitoaction.org/resources/introducing-bendavia/) **Published:** October 4, 2013 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join us with Dr. Ben Bronstein and Travis Wilson from Stealth Peptides. Stealth Peptides is a private biotech company responsible for the development of innovative mitochondrial therapeutics, including the investigational new drug “Bendavia.” Bendavia has been studied in animals and is currently in Phase 2 studies in patients with cardiovascular and kidney diseases. Bendavia appears to target mitochondria and may preserve cellular ATP levels and prevent pathological reactive oxygen species formation in disease. Please join us to learn more about this exciting new drug and future possibilities for use of Bendavia by children and adults with mitochondrial disease. **Resource Categories:** Clinical Trials **Resource Type:** Expert Series --- ### [EPI-743 Clinical Trial Update](https://www.mitoaction.org/resources/epi-743-clinical-trial-update-october-2013/) **Published:** October 25, 2013 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Matt Kline & Dr. Guy Miller **Resource Categories:** Clinical Trials **Resource Type:** Expert Series --- ### [Creatine Deficiency and Supplementation](https://www.mitoaction.org/resources/creatine-deficiency-and-supplementation-with-dr-joseph-clark/) **Published:** November 1, 2013 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join us with Dr. Clark to dig into the latest research on creatine, including: - What is creatine, and what defines a creatine deficiency? - Why do some people without a creatine deficiency benefit from supplemental creatine? - What is the association between oxidative stress, glutathione, autism and mitochondrial dysfunction? - What are some research findings related to creatine and treatment of autism spectrum disorder? - What are some potential benefits and some potential concerns related to creatine supplementation for people with Mito and/or autism? **Resource Categories:** Treatments **Resource Type:** Expert Series --- ### [CoQ-10 Update](https://www.mitoaction.org/resources/coq-10-update/) **Published:** September 7, 2007 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A conversation with compounding pharmacist [Arthur Margolis from America’s Compounding Center](http://www.accrx.com/), September 7, 2007 by teleconference. **Resource Categories:** Treatments **Resource Type:** Expert Series --- ### [2014 Mito Town Meeting](https://www.mitoaction.org/resources/2014-mito-town-meeting/) **Published:** January 10, 2014 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join us for the annual “Mito Town Meeting**”** on Thursday Jan. 9, 2014 at noon EASTERN time (9 a.m. Pacific). The annual town meeting is our way of kicking off the new year by sharing all that is planned for the year. We’ll hear from volunteers and representatives from a variety of programs and organizations. This is the meeting to attend if you want to get involved or get informed! #### AGENDA - Welcome - MitoAction Socials & Events - UMDF Meeting 2014 - Courtagen Life Sciences - EPI-743 Clinical Trial - Thrive RX iThrive webinars - Camp Korey Mito Weeks - Hole in the Wall Gang Camp - Stealth Peptides - Miracles for Mito - Foundation for Mitochondrial Medicine - Light a Light for Mito - Mito 411 & Marcel’s Way - Research Study Updates - Northwest Mito Guild - Mito Canada - 1:15-1:30 Additional announcements and questions – all are welcome. **Resource Categories:** Town Hall Meetings **Resource Type:** Expert Series --- ### [Edison Pharma's Partnership Offers Hope for Mito Communuty](https://www.mitoaction.org/resources/edison-pharmas-partnership-offers-hope-for-mito-communuty/) **Published:** February 5, 2014 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The nation’s leading mitochondrial disease patient advocacy organizations have joined together to congratulate Edison Pharmaceuticals in their announcement last week of a nearly $4.3 billion strategic partnership with Dainippon Sumitomo Pharma Co., Ltd. of Japan. The Mitochondrial Disease Action Committee (MitoAction) and the United Mitochondrial Disease Foundation (UMDF) believe that the partnership between the two pharmaceutical companies is monumental for the mitochondrial disease patient community. The partnership enables Edison to have the resources to bring drugs specifically created for pediatric mitochondrial disease patients, like EPI-743, to the marketplace. The partnership also enables both companies to research, develop, and build a pipeline containing 10 new drugs targeting various aspects of cellular energy metabolism. Those efforts will allow the two companies the ability to target adult neurological diseases that also directly impact the mitochondrial disease adult community. “Not only does the partnership between Edison and Dainippon Sumitomo give us real hope for a treatment for mitochondrial disease in the foreseeable future, this alliance instantiates the field of ‘mitochondrial medicine,’” said Cristy Balcells, RN MSN, and Executive Director of MitoAction. “Our patients, patient community and separately Edison have been pioneering this concept. Today, our dream has become a reality. We believe the field of mitochondrial medicines will grow and establish itself as a standard medical and household term,” Balcells added. “This is a huge victory for mitochondrial medicine,” said Charles A. Mohan, Jr., CEO/Executive Director of the UMDF. “When a partnership of this magnitude is announced, it brings attention to the broader impact that finding treatments and cures for mitochondrial disease has on all of us,” Mohan said. Mitochondrial dysfunction is linked to many neurological diseases such as Parkinson’s, Alzheimer’s, ALS, and other diseases like diabetes and some cancers. “Our expanded partnership with Dainippon Sumitomo Pharma codifies a common value system and vision for discovering and developing new drugs for patients suffering from diseases that share a common mitochondrial mechanism,” said Guy Miller, MD, PhD, Chairman, CEO, Edison Pharmaceuticals, Inc. “By combining efforts with DSP, we are able to scale our initial discoveries and therapeutic programs, and to begin to establish our commercial enterprise. This will start with EPI-743 currently being developed for children with a variety of rare mitochondrial diseases.” As patient advocacy groups, UMDF and MitoAction have worked in a collaborative effort over the past five years to provide education and information about Edison’s EPI-743 and other novel therapeutics in development. Both organizations are grateful to the Edison team, specifically Guy Miller, for his dedication, inspiration, and transparency in providing information to, and receiving input from the mitochondrial disease patient community as he continues his mission toward providing the first approved mitochondrial disease drug. Please join us for a teleconference with Edison Pharma to learn more about this alliance and ask questions. **Resource Categories:** Clinical Trials **Resource Type:** Expert Series --- ### [Dysmotility and Diet](https://www.mitoaction.org/resources/dysmotility-and-diet-2/) **Published:** March 9, 2014 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dysmotility: abnormal contractions of the bowel, which slows or impairs digestive emptying and may cause symptoms such as pain, nausea, bloating, diarrhea, constipation or vomiting. Dysmotility can be caused by abnormalities of the muscles of the intestine (myopathy) or by abnormalities in the nerves in the intestine which control the muscles (neuropathy). For children and adults with mitochondrial disease, dysmotility is common and can be due to muscle myopathy and/or autonomic nervous system dysfunction (dysautonomia). What can you do about gastrointestinal dysmotility? Join us with Kristen Roberts MS, RD from Thrive RX for “Diet and Dysmotility” as we discuss: - A review of common symptoms associated with dysmotility and dysmotility diagnoses. - Diet principles for GI Dysmotility and choosing appropriate foods and fluids - How diet can affect unpleasant GI symptoms and tips for minimizing those symptoms **Resource Categories:** Dysmotility **Resource Type:** Expert Series --- ### [Hearing Loss in Mitochondrial Disease](https://www.mitoaction.org/resources/hearing-loss-in-mitochondrial-disease/) **Published:** April 4, 2014 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Understanding the mechanisms of mitochondrial deafness Join us this month with Dr. Peter Kullar, Clinical Research Fellow at the Wellcome Trust Research Centre for Mitochondrial Disease at Newcastle University (UK) to learn about mitochondrial disease and hearing loss. Key topics include: - Mechanisms of hearing and hearing loss - Clinical profile, workup and diagnosis of a new patient - Treatments and new directions for therapies - Research studies for patients with mitochondrial disease related hearing loss Dr. Kullar and Dr. Chinnery have a specific interest in the A1555G mutation (antibiotic associated deafness) and in causes of mitochondrial disease related deafness. Learn more at **Resource Categories:** Symptoms **Resource Type:** Expert Series --- ### [Autism, Mito and Oxidative Stress](https://www.mitoaction.org/resources/autism-mito-and-oxidative-stress/) **Published:** May 2, 2014 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join us for an informative discussion with Dr. Richard Frye, Director of Autism Research and Director of the Autism Multispecialty Clinic at Arkansas Children’s Hospital Research Institute. There is increasing evidence that mitochondrial dysfunction is associated with autism spectrum disorder. Learn more about the latest research investigating the causes of this relationship, including the role of oxidative stress for these children. Topics include: 1. The evidence for mitochondrial disease and dysfunction in autism spectrum disorder 2. The importance of the oxidative stress in autism spectrum disorder and its impact on mitochondrial function 3. The evidence for a subset of children with autism with acquired mitochondria dysfunction as a result of high levels of oxidative stress **Resource Categories:** Autism **Resource Type:** Expert Series --- ### [EPI-743](https://www.mitoaction.org/resources/epi-743/) **Published:** June 28, 2014 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An update from Edison Pharma’s Dr. Guy Miller & Dr. Matthew Kline **Resource Categories:** Clinical Trials **Resource Type:** Expert Series --- ### [Immune Function and Mitochondrial Disease](https://www.mitoaction.org/resources/immune-function-and-mitochondrial-disease/) **Published:** August 1, 2014 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") What is the impact of illness or infection on a patient with mitochondrial disease? Patients, parents, and healthcare providers with firsthand experience of mitochondrial disease have probably experienced the consequences of an illness or infection. Illnesses and infections have a more dramatic and prolonged impact on children and adults who suffer from mitochondrial disorders, often causing long periods of fatigue, regression in developmental milestones, skills or baseline function, and exacerbation or complaints of additional (unrelated) symptoms during and after the period of illness. In addition, some physicians and families notice an increased susceptibility to illness for patients with mitochondrial disease. However, there is limited published data on systematic analysis of immune system in patients with mitochondrial disease. Research focusing on the relationship between immune function and the mitochondria has been mostly limited to cell-based studies. Join us to listen, learn and discuss the recent research and publication from an interdisciplinary collaboration between clinical investigators, Dr. Melissa Walker (Neurology), Katherine Sims (Metabolic Diseases) and Jolan Walter (Pediatric Immunology) at Massachusetts General Hospital, Boston, MA. These clinicians sought to determine how often infection and illness (including a systemic inflammatory response) occurred in patients with well-defined mitochondrial disease and immunodeficiency. A subset of their mitochondrial patients with evidence of immune abnormalities responded well to immunoglobulin replacement therapy with less infections, preserved developmental milestones and improved quality of life. **Resource Categories:** Immune Function **Resource Type:** Expert Series --- ### [2014 Mito Awareness Rally](https://www.mitoaction.org/resources/2014-mito-awareness-rally/) **Published:** September 6, 2014 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") We had a wonderful Awareness Rally on Friday, Sept. 5, featuring people who are doing amazing things to raise awareness about mitochondrial disease. Each speaker brought great ideas to the table and truly demonstrated the diverse ways we can raise awareness in our communities. We want you to get excited and inspired about raising awareness. Below, you will find some helpful links and ideas from our speakers. Let’s take action to improve the lives of patients and families with mitochondrial disease! --- [Kristi Wees’ blog, Baby Food Steps (and her Mito Minutes)](http://babyfoodsteps.wordpress.com/babymitosteps/mitominute/) [Kristi’s California Pizza Kitchen fundraiser Sept. 15-18 in Pittsburgh](https://www.mitoaction.org/files/CPK-MitoAction-Flyer.pdf) [Request a CPK fundraiser night](http://www.cpk.com/company/fundraise/) --- [Christine Knox’s Mito Quilts of Hope website](http://mitoquiltsofhope.org/) [Facebook page for Mito Quilts of Hope](https://www.facebook.com/quilthope?ref=hl) [Christine’s Story on Indiegogo campaign](http://igg.me/at/christines-story/x/8520310) [Facebook page for Cream Mito ](https://www.facebook.com/events/438005403009290/) --- [Cooper’s Race: A MitoAction Energy Walk & 5K Race in Kingsport, TN](https://www.mitoaction.org/coopersrace) --- [Mito Mad Hatter 5K](https://www.mitoaction.org/mito-mad-hatter-5k) Here’s an easy way to make Mito cookies! Cut out sugar cookies using a jelly bean shaped cutter, then decorate with frosting and round sprinkles. Put some in baggies with an information card about Mito and hand them out to your school class, at work, at parties! Thanks, Nicole and Natalie Dion, for the great idea! --- [Cooper Open and Cooper Open Scholarship in Greenland, NH](http://www.cooperopen.com/) --- Kelley and Alyssa Curley, along with the rest of their family, make and sell these rainbow loom bracelets for Team Lissy Loo for the MtioAction Energy Walk & 5K. So far they’ve sold over 700 and made $700 for Team Lissy Loo! For more on Team Lissy Loo, [click here.](https://www.mitoaction.org/blog/team-lissy-loo-creates-colorful-fundraiser) --- Jeantine Lunshof was recently diagnosed with Mito and takes every opportunity to educate her Harverd colleagues. Her team for the MitoAction Energy Walk & 5K is Running Genes. --- Ethan Allen, captain of Mito Warrior’s Platoon, has been collecting bottles and cans for his MitoAction Energy Walk & 5K team. He also holds information booths, has been in the media, and recently participated in the Fonda Fair Convoy for a Cause. For more on his story, [click here](https://www.mitoaction.org/blog/9-year-old-mito-warrior-mission). --- Tell your story to legislators; fight to pass bills; be vocal! [Mito Support of New England meeting feature Rep. Paul Heroux, who is trying to pass a bill to form a Rare Disease Advisory Council in Massachusetts](https://www.mitoaction.org/files/Heroux-Flyer.pdf) [House Bill 977 would mandate coverage of the Mito Cocktail for all mitochondrial disease patients in the state of Massachusetts.](https://www.mitoaction.org/house-bill-977) Thank you for helping raise awareness! **Resource Categories:** Awareness, Care Management **Resource Type:** Expert Series --- ### [Psychiatric Disorders in Mitochondrial Disease](https://www.mitoaction.org/resources/psychiatric-disorders-in-mitochondrial-disease/) **Published:** October 3, 2014 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Andrew Nierenberg from Massachusetts General Hospital to learn more about Psychiatric Disorders in Mitochondrial Diseases and Mitochondrial Dysregulation in Psychiatric Disorders. Andrew Nierenberg MD is the Director of the Bipolar Clinic and Research Program, Massachusetts General Hospital Professor of Psychiatry at Harvard Medical School. Emerging research suggests that there is a relationship from many psychiatric conditions and mitochondrial dysfunction. Join us to further examine: 1. The role of mitochondria in brain function; 2. Psychiatric manifestations of mitochondrial diseases; and 3. Mitochondrial dyregulations in psychiatric disorders. **Resource Categories:** Psychology **Resource Type:** Expert Series --- ### [PDCD (Pyruvate Dehydrogenase Complex Deficiency)](https://www.mitoaction.org/resources/pcdc-pyruvate-dehydrogenase-complex-deficiency/) **Published:** November 11, 2014 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") What is the mitochondrial disorder PDCD? PDCD is an abbreviation for pyruvate dehydrogenase complex deficiency, a genetic mitochondrial disorder in children which is frequently associated with lactic acidosis and neurological/neuromuscular symptoms. Join us Friday November 7th, 2014 with Dr. Peter Stacpoole from the University of Florida to learn about testing, diagnosis and treatment of PDCD. (From Dr. Stacpoole’s Benefunder Research page) Mitochondria are the intracellular “powerhouses” of our cells. They are responsible for generating the energy needed by every tissue and organ in our bodies to perform their normal functions. Energy is essential to life and, when energy production is compromised, disease results. PDC is a key enzyme for maintaining the body’s energy supply. The scientific team lead by Dr. Peter Stacpoole at the University of Florida in Gainesville, Florida, has connected a number of disease states to their potential treatment with the drug dichloroacetate (DCA). DCA stimulates PDC, increasing its ability to promote cellular energy production. DCA has shown promise in treating several life-threatening diseases, including cancer, pulmonary arterial hypertension and congenital PDC deficiency in children. Solutions are needed to deliver the fruits of science to patients for whom they are intended. With DCA, Dr. Stacpoole’s team has developed a uniquely acting compound that is a prototype of new class of drugs to increase the efficiency of normal metabolic processes essential for cell survival. Indeed, the story of DCA is a striking example in which the basic scientific questions have been answered and animal studies and even early stage clinical trials have been conducted. Yet, DCA is too simple a molecule to be patented. This problem has prevented traditional pharmaceutical support for conducting human trials with DCA in diseases in which currently approved therapy is either inadequate or nonexistent. **Resource Categories:** Pyruvate Dehydrogenase Complex Deficiency (PCDC) **Resource Type:** Expert Series --- ### [Complex Medical Needs and Medical Child Abuse Accusations](https://www.mitoaction.org/resources/complex-medical-needs-and-medical-child-abuse-accusations/) **Published:** December 13, 2014 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Mitochondrial disorders are characterized by complex presentation of multiple symptoms. Due to a variety of factors, including heterogenity of the disease, erratic symptom presentation and general lack of awareness about the condition, families with mitochondrial disease are more often faced with accusations of medical child abuse than other conditions. Living with mitochondrial disease and serving as one’s own advocate impacts the entire family on a daily basis. The literature has documented the impact of chronic illness on children and parents, making parents more susceptible to fatigue and stress. Further, misperceptions about mitochondrial disease may cloud the perception of healthcare providers, especially when symptoms are erratic or don’t make sense. Patient advocate MaryBeth Hollinger RN MSN provides an overview of the literature, examines the implications of mitochondrial disease and medical child abuse accusations on the family, discusses red flags for families and healthcare providers and describes strategies to improve communication for all involved in the care of patients with complex medical conditions. **Resource Categories:** Medical Child Abuse **Resource Type:** Expert Series --- ### [2015 Mito Town Meeting](https://www.mitoaction.org/resources/2015-mito-town-meeting/) **Published:** January 10, 2015 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The 2015 annual “Mito Town Meeting,**”** held on Friday, Jan. 9, 2015, was a huge success! The annual town meeting is our way of kicking off the new year by sharing all that is planned for the next 12 months. We’ll hear from organizations, camps, and companies around the globe that have special opportunities, programs, and projects for patients and families with mitochondrial disease. As you listen to all of these speakers, you realize that, although the day-to-day of living with this disease can be so challenging and frustrating, you’re not alone and a lot of good is being done and a lot of people are dedicating a lot of energy and passion to making it better, said Cristy Balcells, RN MSN, Executive Director of MitoAction. We’re making great strides as a community and that’s really exciting! **Resource Categories:** Town Hall Meetings **Resource Type:** Expert Series --- ### [Stealth BT Mitochondrial Myopathy Trial](https://www.mitoaction.org/resources/stealth-bt-mitochondrial-myopathy-trial/) **Published:** February 18, 2015 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join us with Stealth BioTherapeutics CEO Travis Wilson and others from the Stealth BT team for a live update from Stealth BT ([click here to check out their website](http://mito.convio.net/site/R?i=8VfWuOlCY1c5hXOIlGEBDg)), information about Bendavia, and details about StealthBioTherapeutics’ 2015 mitochondrial myopathy clinical trial. A Q&A opportunity is included in this important discussion. Parents, patients and families – please join us! This special teleconference/webinar is offered in collaboration by the UMDF and MitoAction. For more information about the Stealth Mitochondrial Myopathy Trial, please call the trial question hotline [1-877-227-5018](tel:1-877-227-5018) or visit www.clinicaltrials.gov (search Bendavia). Trial Question Hot Line: 1-877-227-5018 **Resource Categories:** Clinical Trials, Mitochondrial Myopathy **Resource Type:** Expert Series --- ### [Cannabis Oil to Treat Mitochondrial Disease](https://www.mitoaction.org/resources/cannabis-oil-to-treat-mitochondrial-disease/) **Published:** May 17, 2015 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") - What is the historical use of marijuana for medical purposes? - Are there legalities associated with medical marijuana use? - When is medical cannabis a potential therapeutic option for patients with mitochondrial disease? - Are there guidelines on dosing and use? - Is it true that medical cannabis is for pain and seizures only? - Is marijuana addictive, even when used for medical purposes? - Have there ever been safety studies published about use of marijuana for medical purposes? Join us with Dr. Fran Kendall to get the answers to these questions and more regarding the use of medical marijuana (cannabis oil) for treatment in mitochondrial disease patients. Georgia just signed into law the use of cannabis oil for a number of diseases, including mitochondrial disease. Several Mito families in Georgia advocated on behalf of this legislation. While 35 other states have passed similar legislation, Georgia is the first state to include mitochondrial disease in the list of disorders to be treated. Dr. Kendall will touch on historical perspective, mechanisms of action, dosing, safety and outcome data. **Resource Categories:** Treatments **Resource Type:** Expert Series --- ### [Basics of Estate Planning and Special Needs Trusts](https://www.mitoaction.org/resources/basics-of-estate-planning-and-special-needs-trusts-with-special-guest-speaker-annette-hines-esq/) **Published:** June 1, 2015 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Please join MitoAction as we welcome Annette Hines, Esq., founding partner of the Special Needs Law Group of Massachusetts. Ms. Hines will be speaking on the basics of estate planning and special needs trusts laws in the U.S. Questions to be answered include: - What is estate planning? - Why should you create a plan for your estate? - What does a will do? - What is probate, and which assets go through it? - What is a trust? - What documents are required for incapacity planning? - What is a special needs trust, and why would you need one? **Resource Categories:** Estate Planning **Resource Type:** Expert Series --- ### [Getting Involved: Awareness Walk & Events 2015](https://www.mitoaction.org/resources/getting-involved-awareness-walk-events-2015/) **Published:** June 5, 2015 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Update by Cristy Balcells about ways to get involved and spread awareness. **Resource Categories:** Awareness **Resource Type:** Expert Series --- ### [Social Security Disability Insurance and Supplemental Security Income](https://www.mitoaction.org/resources/social-security-disability-insurance/) **Published:** August 7, 2015 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Please join us on as we welcome two experts in the field of Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) provide an overview of these public benefits for Mito patients. Topics to be covered in this conference call include: - Overview of SSI and SSDI programs; - The differences between SSI and SSDI; - Social Security’s definition of disability as it pertains to mitochondrial disease; - How SSDI is designed to work, eligibility criteria, and the full range of SSDI benefitts; - The application and appeals processes for SSI and SSDI; - Resources available to support SSI and SSDI applications and appeals processes; - Information on SSI and SSDI benefits for adult disabled children; - Returning to work after obtaining social security benefits (the “Ticket to Work Program”); - Specific challenges for individuals with mitochondrial disease in applying for SSDI and how to address them; and - The benefits of professional representation and how to evaluate representation options. **Resource Categories:** Insurance **Resource Type:** Expert Series --- ### [Back to School Tips](https://www.mitoaction.org/resources/back-to-school-tips/) **Published:** August 31, 2015 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It’s that time of year … summer comes to a close and children everywhere are going back to school! While a relief for some families, going back to school can be stressful for parents of children with mitochondrial disease. Does my child’s team know what to do? Do they understand my child’s needs? Will they listen to me and follow the recommendations we have discussed? How do I communicate so much information to teachers, school nurses, therapists, etc.? What did I forget to do – or what am I supposed to do? Join us with guest speakers Annette Hines, JD of Special Needs Law Group of Massachusetts and Cristy Balcells, MitoAction’s Executive Director to discuss their “Back to School Checklist”. Topics include: - Do I need to update or establish a health care plan? - How do I explain Mito to teachers, nurses and staff? - What are the most important messages to share with my child’s team? - Is a school team meeting necessary every year? - How can I set my child up for success from the beginning? - How can I serve as the best advocate for my child? **Resource Categories:** School Advocacy **Resource Type:** Expert Series --- ### [Mito Supplement Therapy](https://www.mitoaction.org/resources/mito-supplement-therapy/) **Published:** September 10, 2015 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") What is “the Mito Cocktail”? Referring to the combination of vitamins and supplements used as therapies in the treatment and management of mitochondrial disease and mitochondrial dysfunction, the “Mito Cocktail” is unique to every patient. Join us with compounding pharmacist Ted Toufas PharmD RPh from [Acton Pharmacy ](http://www.dinnohealth.com/)to learn more. - Understand what supplements are most commonly used as mitochondrial disease therapies? - Learn why certain supplements and co-factors help children and adults with mitochondrial disease or dysfunction - Explore the biochemistry of various supplements and how they work in the body and in energy metabolism - Discuss compounding and understand how compounding is used in mitochondrial disease therapy **Resource Categories:** Treatments **Resource Type:** Expert Series --- ### [Mitochondrial Disease and Toxins](https://www.mitoaction.org/resources/mitochondrial-disease-and-toxins/) **Published:** October 5, 2015 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Mitochondrial dysfunction has been identified as an important factor in many diseases and conditions beyond primary mitochondrial disease, including autism, ALS, Parkinson’s, Alzheimer’s, and diabetes. Exposure to toxins via medication, lifestyle, and the environment may lead to mitochondrial dysfunction, cell damage and organ dysfunction. Join us this month with Dr. Kendall Wallace, Ph.D., DABT, ATS to learn more about mitochondrial disorders which may be acquired by or aggravated by toxins. Dr. Wallace’ primary area of research is the mechanisms of involvement of mitochondria in the origination of metabolic diseases which may be caused by toxicity. Focus on: - Non-genetic, lifestyle or exposure-related mitochondrial diseases - Multiple targets for exposure-related mitochondrial disease. - Environmentally acquired mitochondrial disease. **Resource Categories:** Treatments **Resource Type:** Expert Series --- ### [Mitochondrial Myopathy](https://www.mitoaction.org/resources/mitochondrial-myopathy-with-dr-bruce-cohen/) **Published:** November 20, 2015 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") What is Mitochondrial Myopathy? The word “myopathy” means disease of the muscle tissue. As the term implies, mitochondrial myopathy (MM) is a neuromuscular disease caused by damage to the mitochondria. Many patients with mitochondrial disease have a mitochondrial myopathy, either as their sole diagnosis or as an additional, descriptive co-diagnosis as part of their mitochondrial disorder. Mitochondrial myopathy may be present in adults and children, and may occur with or without a genetic mitochondrial disease diagnosis. Further, several clinical trials are currently examining the impact of various therapies or potential treatments for people with mitochondrial myopathy. Join us this month on Friday, November 20th at 12 pm EST with Dr. Bruce Cohen, Director of Pediatric Neurology and then the Director of the NeuroDevelopmental Science Center at Akron Children’s Hospital. Dr. Cohen is well-known and highly respected as an expert author, speaker, clinician and research investigator in mitochondrial disorders. Topics for this important discussion include: - What is mitochondrial myopathy? - How is it diagnosed? - Are there treatments for mitochondrial myopathy? Other management strategies? - What are the most common symptoms of mitochondrial myopathy? - Who typically is diagnosed with mitochondrial myopathy? **Resource Categories:** Mitochondrial Myopathy **Resource Type:** Expert Series --- ### [Diet, Dysmotility, and Tube Feeding](https://www.mitoaction.org/resources/diet-dysmobility-and-tube-feeding/) **Published:** December 4, 2015 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Many children and adults with mitochondrial disease experience significant gastrointestinal or digestive issues as part of their daily disease challenges. When considering the pros and cons of a feeding tube and struggling to identify the best diet for dysmotility, many parents, patients and families are confused by all of the possibilities. On December 4th, 2015, Thrive RX Clinical Specialist Kristen R. Roberts PhD RD shares about diet, dysmotility and tube feeding. Topics for this presentation include: 1. What are the benefits of nutrition support for someone with dysmotility? 2. What type of assessment is needed in order to determine if a feeding tube (and enteral nutrition, or tube feeding) is right for me/my child? 3. What strategies can help improve overall tolerance to diet and enteral nutrition in a person with mitochondrial disease and dysmotility? 4. What are some examples of specific situations when enteral nutrition should be considered? 5. This presentation is appropriate for adult patients, parents of affected children, caregivers, family members and healthcare providers. **Resource Categories:** Dysmotility, Nutrition **Resource Type:** Expert Series --- ### [2016 Mito Town Meeting](https://www.mitoaction.org/resources/2016-mito-town-meeting/) **Published:** January 8, 2016 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The annual town meeting is our way of kicking off the new year by sharing all that is planned for the next 12 months. We’ll hear from organizations, camps, and companies around the globe that have special opportunities, programs, and projects for patients and families with mitochondrial disease. The following will participate in the meeting! - Courtagen Life Sciences, Inc. - ThriveRx - Camp Korey - Mitochondrial Research Guild - Mito Hope & Help - Mito 411 - Genetic Metabolic Institute - Massachusetts General Hospital - Miracles for Mito - Edison Pharma - MitoQ - Double H Ranch camp - Reata Pharmaceuticals - Foundation for Mitochondrial Medicine - Victory Junction camp - GeneDx - UMDF - MitoCanada - AMDF (Australian Mitochondrial Disease Foundation) - NIH - Mitochondrial Medicine Society - Stealth BioTherapeutics **Resource Categories:** Town Hall Meetings **Resource Type:** Expert Series --- ### [NORD Public Policy Team](https://www.mitoaction.org/resources/nord-public-policy-team/) **Published:** March 4, 2016 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A conversation with the public policy team for the National Organization for Rare Disorders (NORD). Topics of discussion will include: - Current federal and state legislative priorities for NORD; - NORD’s interaction with the Food & Drug Administration, National Institutes of Health and the Center for Medicare & Medicaid Services; - Status of issues important to the Mito community, including mandated insurance coverage for medical foods, vitamins and supplements used to treat rare diseases and legislation relating to orphan drugs; - How NORD works with families on legislation, including NORD’s legislative priorities as well as issues families bring to NORD; and - What patients and families can do to make sure their voices are heard on issues that are important to them. NORD is a non-profit organization which supports individuals with rare diseases through advocacy, education, research grants and networking among service providers. NORD’s Washington, D.C.-based policy team provides a consistent voice for rare disease patients and families on Capitol Hill and beyond. Speakers include Martha Rinker JD, VP of Public Policy, Paul Melmeyer, Assistant Director of Public Policy, and Tim Boyd, Associate Director of Public Policy. **Resource Categories:** Advocacy, Legislation **Resource Type:** Expert Series --- ### [Incapacity Planning and Guardianship](https://www.mitoaction.org/resources/incapacity-planning-and-guardianship/) **Published:** March 31, 2016 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") As patients or caregivers, it is frightening to think about what would happen if we could not advocate for ourselves. Fortunately, there are legal documents that can be used to communicate our wishes under such circumstances. This type of legal preparation is called incapacity planning and guardianship. Annette Hines, Esq., founding partner of the Special Needs Law Group of Massachusetts, will be speaking on the basics of incapacity planning and guardianship and will answer any questions patients or caregivers may have about this type of legal preparation. Questions to be answered include: - What is a power of attorney? - Why do you need to create different power of attorney documents for finances and health care? - What happens if you do not have power of attorney documents set up in advance? - What is a guardian, and why would you need for one to be designated? - What documents are required to appoint someone as a guardian? **Resource Categories:** Estate Planning **Resource Type:** Expert Series --- ### [Mitochondrial Medicine Society Update 2016](https://www.mitoaction.org/resources/mitochondrial-medicine-society-update-2016/) **Published:** April 3, 2016 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Amy Goldstein provides an update on the Mitochondrial Medicine Society. Areas of discussion include: - Transplantation in Mito patients - Stroke protocol for MELAS - Standards of care for Mito patients Centers of Excellence and the need for community involvement/input **Resource Categories:** Mitochondrial Medicine Society (MMS) **Resource Type:** Expert Series --- ### [Extended School Year and Summer Camp Planning](https://www.mitoaction.org/resources/extended-school-year-and-summer-camp-planning-with-annette-hines-esq/) **Published:** April 6, 2016 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Summertime is a time of changed routines for many Mito families. Camp programs, such as those supported by the [Matthew Harty Camper Fund](https://www.mitoaction.org/programs-support/support/mhcf/), provide special opportunities for children with mitochondrial disease. Mitochondrial disease patients often qualify for and benefit from extended school year services through local school systems as well. Documenting the child’s needs to care providers as well as knowing your family’s rights to extended school year services can make a huge difference in your child’s summer experience. Annette Hines, Esq., founding partner of the Special Needs Law Group of Massachusetts, will be speaking on the basics of extended school year planning and will answer any questions patients or caregivers may have about summertime planning. Questions to be answered include: - Does my child qualify for extended school year services? - How do I obtain extended school year services for my child? - How does extended school year planning fit into the IEP process? - What do I need to do to make sure my child’s needs are met at summer camp? **Resource Categories:** Care Management **Resource Type:** Expert Series --- ### [Medical Homes](https://www.mitoaction.org/resources/medical-homes/) **Published:** August 5, 2016 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Kristi Wees discusses medical homes for Mito patients. #### Topics include: - The importance of a medical home for a mitochondrial disease patient. - Definition of a medical home. - How to establish a medical home. - Why a medical home is an essential component of good patient advocacy. - Tips on maintaining a healthy medical home relationship. Ms. Wees will describe theses issues primarily from a pediatric perspective, but she will give adult examples as well. **Resource Categories:** Day-to-Day with Mito **Resource Type:** Expert Series --- ### [Molecular Diagnostic Testing for Mitochondrial Disorders](https://www.mitoaction.org/resources/molecular-diagnostic-testing-for-mitochondrial-disorders/) **Published:** October 7, 2016 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Darius Adams, a clinical geneticist, discusses molecular diagnostic testing for mitochondrial disorders. Dr. Adams, Medical Director of the Goryeb Children’s Hospital Genetics and Metabolism Division in addition to the Personalized Genomic Medicine Program at Atlantic Health System in Morristown, NJ, will: - Explore gene testing and discuss the rationale for using it as first-line testing. - Review traditional diagnostic pathways. - Discuss newer testing that has become available in recent years. - Review new approaches to attempt to shorten time to diagnosis and increase precision. **Resource Categories:** Diagnosis **Resource Type:** Expert Series --- ### [Getting Through the Day with Mito](https://www.mitoaction.org/resources/getting-through-the-day-with-mito/) **Published:** November 4, 2016 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Cheryl M. Clow RN discusses Getting Through the Day with Mito: Treatments, Supplements, and Humor. #### Topics of discussion include: - Patient care considerations and making the most of the energy you have each day. - Reviewing activities of daily living, their impact on individuals with mitochondrial disorders, and planning ahead. - Describing ways to lessen stress and boost the immune system. **Resource Categories:** Day-to-Day with Mito **Resource Type:** Expert Series --- ### [Exercise and Nutrition Therapy for Mitochondrial Disease](https://www.mitoaction.org/resources/exercise-and-nutrition-therapy-for-mitochondrial-disease/) **Published:** December 2, 2016 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Tarnopolsky, Professor of Pediatrics and Medicine, President and CEO, Exerkine Corporation, and Director of Neuromuscular and Neurometabolic Clinic at McMaster University Medical Center, will discuss exercise and nutrition therapy for mitochondrial disease including: - the theory and practical issues with endurance and resistance exercise therapy; - general nutritional guidelines for mitochondrial disease; - the rationale for the mitochondrial cocktail. **Resource Categories:** Exercise, Nutrition **Resource Type:** Expert Series --- ### [Stealth BioTherapeutics MMPOWER Update](https://www.mitoaction.org/resources/stealth-biotherapeutics-mmpower-update/) **Published:** December 6, 2016 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This summer, Stealth BioTherapeutics (Stealth BT) shared preliminary positive data from the MMPOWER study. The study purpose was to evaluate safety and efficacy of elamipretide (previously known as Bendavia) in adults with primary mitochondrial myopathy and genetically confirmed mitochondrial disease. Mitochondrial myopathy is primarily characterized by muscle weakness, fatigue, and exercise intolerance. Patients with genetically confirmed mitochondrial disorders may also experience multi-system organ involvement and myriad of complications related to the body’s inability to adequately generate energy (ATP) at the cellular level. The MMPOWER trial measured changes in the participant’s ability to complete a six-Minute walk test, a performance-based measure of functional exercise capacity. Join us for a collaborative presentation hosted by MitoAction, the United Mitochondrial Disease Foundation, the Foundation for Mitochondrial Medicine, with Stealth BT to learn more about the results from the MMPOWER trial, and information about the planned Phase 3 clinical trial. This special presentation is intended to educate and inform patients, parents, caregivers, family members, and others involved in the daily lives of adults and children with mitochondrial disease. **Resource Categories:** Clinical Trials **Resource Type:** Expert Series --- ### [2017 Mito Town Meeting](https://www.mitoaction.org/resources/2017-mito-town-meeting/) **Published:** January 6, 2017 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The annual town meeting is our way of kicking off the new year by sharing all that is planned for the next 12 months. We’ll hear from organizations, camps, and companies around the globe that have special opportunities, programs, and projects for patients and families with mitochondrial disease. #### The following will participate in the meeting! - Mito 411 - UMDF - Miracles for Mito - MitoCanada - Mito Hope & Help - Foundation for Mitochondrial Medicine - Rare New England - Edison Pharma - Courtagen - Stealth BioTherapeutics - Genetic Metabolic Center for Education - Gene DX - Reata Pharmaceuticals - Mitochondrial Medicine Society - Thrive Rx - MitoQ - AMDF (Australian Mitochondrial Disease Foundation) **Resource Categories:** Town Hall Meetings **Resource Type:** Expert Series --- ### [Mitochondria and MitoQ: A Research Update](https://www.mitoaction.org/resources/mitochondria-and-mitoq-a-research-update/) **Published:** March 2, 2017 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Greg Macpherson, CEO of MitoQ, discusses “Mitochondria and MitoQ: A Research Update.” MitoQ’s mission is to raise awareness of mitochondria and the link between optimal mitochondria function, health, and longevity. #### Topics of discussion include: - What is MitoQ? - Research Overview: - Mitochondrial Disease and Dysfunction - MitoQ - Clinical implications - Anti-aging research update **Resource Categories:** Clinical Trials **Resource Type:** Expert Series --- ### [Mitochondrial Replacement Therapy](https://www.mitoaction.org/resources/mitochondrial-replacement-therapy-2/) **Published:** April 21, 2017 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Michio Hirano, Chief of the Neuromuscular Division at Columbia University Medical Center, and Kris Engelstad MS CGC, a board-certified genetic counselor and program coordinator at Columbia University Medical Center, discuss Mitochondrial Replacement Therapy. Learn more about MRT, also known in the media as three-person babies. #### Topics of discussion include: - Family planning options are severely limited for women carriers of DNA mutations in the mitochondrial genome. - There is an urgent clinical need to develop IVF techniques to reduce/eliminate the transmission of mitochondrial genome DNA mutations from mother to offspring. - Mitochondrial replacement therapy (MRT) is a promising technique for female carriers. - Continued research and development of MRT is necessary for future clinical use. - Adult female carriers and their male partners can participate in this research by donating oocytes/sperm for the production of viable zygotes using MRT. **Resource Categories:** Treatments **Resource Type:** Expert Series --- ### [BioElectron Update](https://www.mitoaction.org/resources/bioelectron-update/) **Published:** June 23, 2017 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Guy Miller, BioElectron’s CEO, and Matthew Klein, its Chief Medical Officer, will discuss the following: - Challenges in the development of drugs for mitochondrial disease - Status of BioElectron mitochondrial disease programs - Next steps **Resource Categories:** Clinical Trials **Resource Type:** Expert Series --- ### [Stealth BioTherapeutics MMPOWER-2 and REPOWER Study Update](https://www.mitoaction.org/resources/stealth-biotherapeutics-mmpower-2-and-repower-study-update/) **Published:** August 11, 2017 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Stealth BioTherapeutics patient/community update on MMPOWER-2 and RePOWER Primary Mitochondrial Myopathy clinical trials Stealth’s CEO Reenie McCarthy and Chief Clinical Development Officer Jim Carr shares updates on Stealth’s second clinical trial for mitochondrial myopathy, the MMPOWER-2 study. Join us for this free webinar to learn more about: - Safety and tolerability data of elamipretide (previously known as Bendavia) from the MMPOWER-2 study - Tests and assessments used to measure efficacy of elamipretide in the MMPOWER-2 trial - Endpoints and outcomes from the MMPOWER-2 trial for people ages 16-65 with genetically-confirmed mitochondrial myopathy - Future Stealth BT studies evaluating elamipretide and mitochondrial myopathy - All are welcome and encouraged to listen to this live presentation. An opportunity to submit questions online will be provided during the live webinar. **Resource Categories:** Clinical Trials **Resource Type:** Expert Series --- ### [How Enteric Microbiome Mitochondrial Function](https://www.mitoaction.org/resources/how-enteric-microbiome-mitochondrial-function/) **Published:** September 22, 2017 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Richard Frye, MD, PhD, FAAP, FAAN, CPI, discusses how Enteric (gut) Microbiome Modulates Mitochondrial Function. Talking points include: - The enteric (gut) microbiome has an important influence on health and disease states in humans. - The enteric microbiome influences the human host using chemical mediators, some of which can directly affect mitochondrial function - Short chain fatty acids produced by gut bacteria not only modulate mitochondrial function and cellular regulatory pathways, but can also be used as mitochondrial fuels. **Resource Categories:** Autism, Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** Expert Series --- ### [What You Should Know About Genetic Testing for Mitochondrial Disorders](https://www.mitoaction.org/resources/what-you-should-know-about-genetic-testing-for-mitochondrial-disorders/) **Published:** November 3, 2017 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join Amanda Balog, CGC, Senior Genetic Counselor, Mitochondrial and Metabolic Genetics, of GeneDx as she discusses: “What You Should Know About Genetic Testing for Mitochondrial Disorders.” Talking points include: - Many genetic testing options for Mito patients are available and no one test is right for every individual patient. - Sample type matters when testing for mitochondrial disorders. - Detailed clinical information and family member testing is important for the interpretation of genetic testing. **Resource Categories:** Diagnosis **Resource Type:** Expert Series --- ### [Medical Care: What Approach Works for You?](https://www.mitoaction.org/resources/medical-care-what-approach-works-for-you/) **Published:** December 8, 2017 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Mark Korson discusses: “Medical Care: What Approach Works for You?” Talking points include: - Pros and cons of conventional live direct care - Telemedicine long-distance direct care options - Telehealth physician-to-physician clinical support (indirect care) **Resource Categories:** Care Management **Resource Type:** Expert Series --- ### [2018 Mito Town Meeting](https://www.mitoaction.org/resources/2018-mito-town-meeting/) **Published:** January 5, 2018 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Organizations share what they have planned for the next 12 months. The annual town meeting is our way of kicking off the new year by sharing all that is planned for the next 12 months. We’ll hear from organizations and companies around the globe that have special opportunities, programs, and projects for patients and families with mitochondrial disease. We’ll hear from the following organizations, among many others! - MitoAction - Mitochondrial Medicine Society - Foundation for Mitochondrial Medicine - BioElectron - Stealth BioTherapeutics - Oley Foundation - GeneDx - Miracles for Mito - UMDF - MitoBridge - Ultragenyx - Reata Pharmaceuticals - VMP Genetics - Lineagen Mitochondrial & Molecular Medicine - North American Mitochondrial Disease Consortium - Australian Mitochondrial Disease Foundation - ThriveRx **Resource Categories:** Town Hall Meetings **Resource Type:** Expert Series --- ### [Is it Really Mito?](https://www.mitoaction.org/resources/is-it-really-mito/) **Published:** February 20, 2018 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Fran Kendall of VMP Genetics discusses “Is it really Mito? When an alternative diagnosis should be considered.” Talking points include: - Clinical red flags that suggest an alternative diagnosis should be considered; - Why that option should be entertained; - Tools utilized to reanalyze patients classified with mitochondrial disease. **Resource Categories:** Understanding Mito **Resource Type:** Expert Series --- ### [The Evolution of Leigh Syndrome](https://www.mitoaction.org/resources/dr-koenig-the-evolution-of-leigh-syndrome/) **Published:** March 2, 2018 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ##### Talking points include: - Understanding the history of Leigh Syndrome - Understanding Leigh Syndrome - Current treatment **Resource Categories:** Leighs Syndrome **Resource Type:** Expert Series --- ### [Spectrum Needs, a New Comprehensive Nutritional Therapy for Autism, Functional Conditions and Mitochondrial Disease](https://www.mitoaction.org/resources/dr-boles-spectrum-needs/) **Published:** April 6, 2018 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") #### Talking points include: - What does the medical literature say regarding the uses of nutritional therapies in the autism and related neurodevelopmental disorders? - What about the uses of nutritional therapies in functional disease such as pain, fatigue, GI dysmotility, dysautonomia, anxiety, and depression? - What exactly is Spectrum Needs, and how can it be used as nutritional support for the above conditions? - Spectrum Needs beyond the spectrum: What about the use of this product in the average “mito” patient? - How to integrate SpectrumNeeds into a complicated supplement regiment? **Resource Categories:** Treatments **Resource Type:** Expert Series --- ### [The Spectrum of Medical Child Abuse and What is Happening Across the Country?](https://www.mitoaction.org/resources/dr-boles-the-spectrum-of-medical-child-abuse-and-what-is-happening-across-the-country/) **Published:** May 4, 2018 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") #### Talking points include: - From the poisoner to the innocent, what is the spectrum of medical child abuse? -What mistakes are commonly made by medical providers when innocent families are reported? - What mistakes are commonly made by parents that frequently trigger an allegation? - Can a good parent be contributing to harm even if they always had the best intentions and have never lied? - What can you do if you are the subject of an allegation? **Resource Categories:** Medical Child Abuse **Resource Type:** Expert Series --- ### [Mitochondrial Medicine Society (MMS) Standards of Care Review & Updates](https://www.mitoaction.org/resources/dr-amel-karaa-mms-standards-of-care/) **Published:** September 7, 2018 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ##### Talking points include: - What are Standards of Care and why does the Mito community need such standards? - Review the MMS’s Standards of Care for Mitochondrial Disease and how they were developed. - Outline upcoming MMS projects. **Resource Categories:** Mitochondrial Medicine Society (MMS) **Resource Type:** Expert Series --- ### [Mitochondrial Disease and the Immune System](https://www.mitoaction.org/resources/dr-peter-mcguire-mito-immune-systems/) **Published:** October 5, 2018 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") #### Talking points include: - What is the immune system and why is it important? - Infection and mitochondrial disease - Immune function in mitochondrial disease Throughout his career, Dr. McGuire has been focused on improving the care of patients with disorders of mitochondrial metabolism. By combining his training in Immunology and Biochemical Genetics, he has fashioned a translational research program to understand the interplay between mitochondrial metabolism and the immune system. As Head of the Metabolism, Infection and Immunity Section (MINIS) at NHGRI, Dr. McGuire and his team study the interplay between metabolism and the immune system in patients with inborn errors of mitochondrial metabolism. The group focuses on two aspects of immunometabolism: #### Immune system activation and end-organ mitochondrial metabolism The focus of the group’s research on immune system activation and end-organ metabolism is based on the clinical observation that infection is a major cause of morbidity and mortality in patients with mitochondrial disease. The MINIS uses animal models, combined with infectious organisms, to yield insights into the metabolic perturbations seen in disorders of mitochondrial metabolism during infection and to identify potential targets for intervention. #### Role of mitochondria in immune cell function The group also studies mitochondrial metabolism and immune cell function. Immune cells drastically alter their metabolic programming during activation and differentiation. The deficiencies present in patients with mitochondrial disease may affect these processes. The group developed a clinical protocol in the National Institutes of Health (NIH) Clinical Center, called the NIH MINI Study: Metabolism, Infection and Immunity in Inborn Errors of Metabolism (NIH Clinical Trial NCT01780168). Immune phenotypes identified in patients are further explored via animal and cell culture model systems. By expanding the immune phenotype of patients with mitochondrial disease, these studies will have an impact on the clinical care of patients as well as serving as the foundation for understanding the role of mitochondria in immune function. **Resource Categories:** Understanding Mito **Resource Type:** Expert Series --- ### [Mitochondrial Defects May Lead to Autism](https://www.mitoaction.org/resources/wallace030521/) **Published:** March 13, 2021 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction and Dr. Douglas Wallace, the Director of The Center for Mitochondrial and Epigenomic Medicine at Children’s Hospital of Philadelphia (CHOP) for our March Monthly Mito Expert Series presentation titled, Mitochondrial Defects May Lead to Autism. **Resource Categories:** Autism **Resource Type:** Expert Series --- ### [Genetics, Genomics & Mitochondrial DNA Testing](https://www.mitoaction.org/resources/genetics-genomics-mitochondrial-dna-testing/) **Published:** August 3, 2012 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Tools for Testing Mitochondrial Disorders: The Latest Advances in Genetics and Genomics Guest speaker Dr. Richard Boles from Children’s Hospital Los Angeles and [Courtagen Life Sciences, Inc.](http://courtagen.com/) to discuss: - What is genomic sequencing and how does it change testing for mitochondrial disorders? - Is NextGen testing appropriate for all people with suspected mitochondrial disease? - How can DNA sequencing change information available about family inheritance of mitochondrial diseases? - Do advances in genomic sequencing impact treatment options for Mito patients? **Resource Categories:** Diagnosis **Resource Type:** Expert Series --- ### [Primary Mitochondrial Disease and Secondary Mitochondrial Dysfunction: Importance of Distinction for Diagnosis and Treatment](https://www.mitoaction.org/resources/primary-mitochondrial-disease-and-secondary-mitochondrial-dysfunction-importance-of-distinction-for-diagnosis-and-treatment/) **Published:** April 19, 2019 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction and Dr. Richard Frye to discuss the distinction between primary and secondary mitochondrial diagnosis. Some talking points will include: - Primary mitochondrial disease (PMD) is ideally diagnosed by a known or indisputably pathogenic mitochondrial or nuclear DNA mutation. - Secondary mitochondrial dysfunction (SMD) can be caused by genes encoding either function nor production of the oxphos proteins and accompanies many hereditary non-mitochondrial diseases. - Secondary mitochondrial dysfunction (SMD) can also be caused by enviornmental factors. - In the absence of the ability to diagnose a primary mitochondrial disease (PMD), mitochondrial dysfunction can be effectively treated with standard treatments for PMD. - When the etiology of mitochondrial dysfunction is unknown, re-evaluation for genetic and other causes should be revisited on a regular basis. **Resource Categories:** Diagnosis, Treatments **Resource Type:** Expert Series --- ### [Get Connected with MyMito App](https://www.mitoaction.org/resources/get-connected-with-mitoaction-mobile/) **Published:** November 1, 2019 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction’s CEO, Kira Mann and Karen’s CEO, Dave Williams for a step-by-step tutorial to get started using the MyMito App App platform. This tool will help you manage your day-to-day with mito and help us learn more about the daily challenges you face living with this rare disease. **Resource Categories:** Care Management, Caregivers & Family, Day-to-Day with Mito, Understanding Mito **Resource Type:** Expert Series --- ### [Mitochondrial Genetics and Diseases](https://www.mitoaction.org/resources/dr-douglas-wallace-discusses-mitochondrial-genetics-and-diseases/) **Published:** June 1, 2018 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ##### Talking points include: - The mtDNA has a unique quantitative genetics - Different mtDNA mutations can result in very different symptoms - The high copy number of mtDNA can result in heterplasmy which can result in highly variable symptoms - Ancient mtDNA variants also contribute to common diseases such as autism, diabetes, and Alzheimer Disease **Resource Categories:** Understanding Mito **Resource Type:** Expert Series --- ### [Mitochondrial Medicine Society Publications](https://www.mitoaction.org/resources/mitochondrial-medicine-society-publication/) **Published:** March 6, 2015 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join us with Dr. Sumit Parikh, Director of the Cleveland Clinic Neurogenetics, Metabolic and Mitochondrial Disease program, and past president of the Mitochondrial Medicine Society. Learn more about the 2014-2015 publications based on collaborations and consensus surveys completed by the Mitochondrial Medicine Society. The landmark series of publications is the first to address existing standards of care and most common approaches to diagnosis, use of supplements and symptom management by leaders in mitochondrial medicine around the US. Key points: - Mitochondrial medicine’s complexity bring unique challenges to physicians - The practice of Mitochondrial Medicine has varied from provider-to-provider - Patients and families deserve uniformity in regards to diagnosis and treatment - The MMS Consensus Project was conceived with this goal in mind **Resource Categories:** Diagnosis, Mitochondrial Medicine Society (MMS), Symptoms, Treatments, Understanding Mito **Resource Type:** Expert Series --- ### [Helping Your Child Become Independent](https://www.mitoaction.org/resources/helping-your-child-become-independent/) **Published:** December 6, 2013 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") How can you prepare your child for independence? Transition to independence is challenging and important for all kids, but helping your child make good choices on his own when he or she also has a chronic illness can be complicated. How much independence is too much? At what age do you start planning for transition and allowing your child to make choices? How can we let our kids make their own decisions – and their own mistakes – when the stakes are so high? How can kids learn to self-advocate? What can parents do to help their chronically ill kids be able to listen to their own bodies, and to learn to plan accordingly? Join us for a special presentation on “Tools for Transition: Gaining independence” with Ann Weaver, patient advocate at Thrive RX, and Dr. Parag Shah, medical director of the Children’s Chronic Illness Transition Team at Lurie Children’s Hospital. **Resource Categories:** Day-to-Day with Mito **Resource Type:** Expert Series --- ### [Clinicians' Panel Discussion #2](https://www.mitoaction.org/resources/clinicians-panel-discussion-2/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Jerry Vockley, Marie Norris, Dr. Peter McGuire, Dr. Georgianne Arnold, Pamela Lane take questions from the International Metabolic Conference attendees. https://youtu.be/Ox9eXl2xjDU **Resource Type:** IMC, IMC 2022 --- ### [Introducing Food and Mealtime & How Much to Watch Fasting Without Making it Weird](https://www.mitoaction.org/resources/introducing-food-and-mealtime-how-much-to-watch-fasting-without-making-it-weird/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Learn about managing your fat intake, fasting and helping your FAOD’er find balance. https://youtu.be/Y5p-xYdx5zE **Resource Type:** IMC, IMC 2022 --- ### [HITT Exercises and Stretching for all FOADs](https://www.mitoaction.org/resources/hitt-exercises-and-stretching-for-all-foads/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Pamela Tucker, PT, DPT from the Institute of Human Performance shares the most effective exercise and stretching without stressing your body. https://youtu.be/8zwXbYoaXLA **Resource Type:** IMC, IMC 2022 --- ### [Ultragenyx Pharmaceutical Community Update](https://www.mitoaction.org/resources/ultragenyx-pharmaceutical-community-update/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Laura PIsani-Bentancourt, MD provides an update on initiatives at Ultragenyx including patient education, clinical trials and studies for the FAOD community. https://youtu.be/ZmNBBTnNl20 **Resource Type:** IMC, IMC 2022 --- ### [How to Approach Sports and Exercise with an FOAD](https://www.mitoaction.org/resources/how-to-approach-sports-and-exercise-with-an-foad/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Melanie Gillingham shares how to successfully participate in sports and exercise when you have an FAOD. https://youtu.be/47QgX-krs9M **Resource Type:** IMC, IMC 2022 --- ### [Transitioning from Pediatric to Adult Care](https://www.mitoaction.org/resources/transitioning-from-pediatric-to-adult-care/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It can be a stressful time when your child is growing up and is ready to move from pediatric care to adult care – a new team, a new routine and when they turn 18, now your child is able to make care decisions for themselves. Dr. Georgianne Arnold takes you through this transition to ease your mind and ensure this time goes as smoothly as possible for everyone. https://youtu.be/i9wHP6RwE6M **Resource Type:** IMC, IMC 2022 --- ### [The Journey of a Study - Beth & Luke Folcher](https://www.mitoaction.org/resources/the-journey-of-a-study-beth-luke-folcher/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Mom Beth and son Luke share their experience participating in a clinical trial. https://youtu.be/MFnB1cfzjRc **Resource Type:** IMC, IMC 2022 --- ### [Roadmap to Self-Care: Supporting Families and Caregivers of Children with Chronic Illness](https://www.mitoaction.org/resources/roadmap-to-self-care-supporting-families-and-caregivers-of-children-with-chronic-illness/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Pamela Lane discusses ways to ensure the all members of your loved one’s family care team are supported throughout their care journey. https://youtu.be/f9FQjLRwLrI **Resource Type:** IMC, IMC 2022 --- ### [Pandemic Lessons Learned from the Mitochondrial Disease Community](https://www.mitoaction.org/resources/pandemic-lessons-learned-from-the-mitochondrial-disease-community/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Pandemic Lessons Learned from the Mitochondrial Disease Community. https://youtu.be/2x-Akg1y3Bs **Resource Type:** IMC, IMC 2022 --- ### [Inborn Errors of Metabolism and Puberty](https://www.mitoaction.org/resources/inborn-errors-of-metabolism-and-puberty/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Jerry Vockley takes a deep dive into the effects of having a metabolic condition and it’s impact on puberty. https://youtu.be/FKC1bhAmcGA **Resource Type:** IMC, IMC 2022 --- ### [A Physician's Perspective on Leigh Syndrome](https://www.mitoaction.org/resources/leighsyndrome/) **Published:** July 17, 2020 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction and Dr. MaryKay Koenig from the UT Mitochondrial Center of Excellence for our July Monthly Mito Expert Series presentation about A Physician’s Perspective on Leigh Syndrome! **Resource Categories:** Leighs Syndrome **Resource Type:** Expert Series --- ### [Mito Basics: Genetics, Testing & Financial](https://www.mitoaction.org/resources/genedx2020/) **Published:** December 2, 2020 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction and David Keane from GeneDX for our December Monthly Mito Expert Series presentation titled: *Mito Genetic Basics: Disease, Testing and Financial.* **Resource Categories:** Diagnosis **Resource Type:** Expert Series --- ### [Clinician's Panel Discussion #1](https://www.mitoaction.org/resources/clinicians-panel-discussion-1/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Melanie Gillingham, Dr. Eric Goetzman, Dr. Pamela Tucker answer questions from International Metabolic Conference attendees. https://youtu.be/XqDUQAGqzT4 gilling **Resource Type:** IMC, IMC 2022 --- ### [When its not your FOAD: Getting Medical Support When There is a Dual Diagnosis or Complex Care](https://www.mitoaction.org/resources/when-its-not-your-foad-getting-medical-support-when-there-is-a-dual-diagnosis-or-complex-care/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Jerry Vockley discusses how to navigate when you may have multiple diagnosis or a complex care situation. https://youtu.be/JjjCMlDzO-Q **Resource Type:** IMC, IMC 2022 --- ### [Hear Your Song Patient Song](https://www.mitoaction.org/resources/hear-your-song-patient-song/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Hear Your Song joined us for the 2022 IMC and children wrote their own song. https://youtu.be/R8crcQXrF4Y **Resource Type:** IMC, IMC 2022 --- ### [You Won't Miss the Fat - Cooking One Meal for the Whole Family](https://www.mitoaction.org/resources/you-wont-miss-the-fat-cooking-one-meal-for-the-whole-family/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join FAOD parents Beth Folcher and Stephanie Harry to explore nutrition and substitutions for stress-free meal-planning that’s inclusive of the whole family. You do not have to sacrifice flavor for good nutrition. Roll up your sleeves and prepare for a cooking adventure, flexibility, and fun. https://youtu.be/QUoNhCta4LA **Resource Type:** IMC, IMC 2021 --- ### [Those Dreaded ER Visits: Advocating for Yourself or Your Child - Dr. Mark Korson](https://www.mitoaction.org/resources/those-dreaded-er-visits-advocating-for-yourself-or-your-child-dr-mark-korson/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/N_MUmVZkGhI **Resource Type:** IMC, IMC 2021 --- ### [Viral Infections & Mitochondrial Disease - Dr. Peter McGuire](https://www.mitoaction.org/resources/viral-infections-mitochondrial-disease-dr-peter-mcguire/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/X17yoO1nk64 **Resource Type:** IMC, IMC 2021 --- ### [Sunday Welcome - Kira Mann](https://www.mitoaction.org/resources/sunday-welcome-kira-mann/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/7GP-Y7AViOo **Resource Type:** IMC, IMC 2021 --- ### [Hospital Trauma: What it is & Positive Coping Strategies for the Family - Christopher Boys, PhD, LP](https://www.mitoaction.org/resources/hospital-trauma-what-it-is-positive-coping-strategies-for-the-family-christopher-boys-phd-lp/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/2krIHOUyQpg **Resource Type:** IMC, IMC 2021 --- ### [Cardiac Arrhythmias: Basics & Monitoring- Jeffrey M. Vinocur, CEPS-P and Dr. Melanie Gillingham](https://www.mitoaction.org/resources/cardiac-arrhythmias-basics-monitoring-jeffrey-m-vinocur-ceps-p-and-dr-melanie-gillingham/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/YNumDccDjMg **Resource Type:** IMC, IMC 2021 --- ### [Yoga for the Whole Family - Marcella Longlade](https://www.mitoaction.org/resources/yoga-for-the-whole-family-marcella-longlade/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/0PDog46UuQA long **Resource Type:** IMC, IMC 2021 --- ### [How Mitochondria Change & Understanding Strange Words: ROS & Cardiolipin - Dr. Eric Goetzman](https://www.mitoaction.org/resources/how-mitochondria-change-understanding-strange-words-ros-cardiolipin-dr-eric-goetzman/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/4P0tCGf3K4Q **Resource Type:** IMC, IMC 2021 --- ### [Physical Therapy & Rhabdomyolysis - Tobi Schaap, PT, DPT, OCS](https://www.mitoaction.org/resources/physical-therapy-rhabdomyolysis-tobi-schaap-pt-dpt-ocs/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/eZlhmEG4wic **Resource Type:** IMC, IMC 2021 --- ### [Updates & Information with Ultragenyx - Eliza Kruger, Vanessa Rangel Miller, and Kristin Voorhees](https://www.mitoaction.org/resources/updates-information-with-ultragenyx-eliza-kruger-vanessa-rangel-miller-and-kristin-voorhees/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/4Igmw14gx2M **Resource Type:** IMC, IMC 2021 --- ### [Understanding Rhabdomyolysis - Dr. Mark Korson](https://www.mitoaction.org/resources/understanding-rhabdomyolysis-dr-mark-korson/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/lpXCQcEE4ds **Resource Type:** IMC, IMC 2021 --- ### [2021 MitoAction IMC - Understanding MCADD: Short & Long-Term - Dr. Georgianne Arnold](https://www.mitoaction.org/resources/2021-mitoaction-imc-understanding-mcadd-short-long-term-dr-georgianne-arnold/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/7VydYX2voNE **Resource Type:** IMC, IMC 2021 --- ### [2021 MitoAction International Metabolic Conference - Saturday Welcome - Kira Mann](https://www.mitoaction.org/resources/2021-mitoaction-international-metabolic-conference-saturday-welcome-kira-mann/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/PTK-xTNobSc **Resource Type:** IMC, IMC 2021 --- ### [2021 MitoAction International Metabolic Conference - Young Adult Panel](https://www.mitoaction.org/resources/2021-mitoaction-international-metabolic-conference-young-adult-panel/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Young adults diagnosed with a Fatty Acid Oxidation Disorder share their experiences gaining independence and taking charge of their care. https://youtu.be/u0pgIFAFPM8 **Resource Type:** IMC, IMC 2021 --- ### [2021 MitoAction IMC - Family Cooking Session - Dr. Melanie Gillingham & Claire Held](https://www.mitoaction.org/resources/2021-mitoaction-imc-family-cooking-session-dr-melanie-gillingham-claire-held/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/OGJcUOZj5Jk **Resource Type:** IMC, IMC 2021 --- ### [2021 MitoAction IMC - Laboratory Testing for FAOD in Routine & Emergency Settings - Dr. Nicola Longo](https://www.mitoaction.org/resources/2021-mitoaction-imc-laboratory-testing-for-faod-in-routine-emergency-settings-dr-nicola-longo/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/y4livztg-Ls 2 **Resource Type:** IMC, IMC 2021 --- ### [2021 MitoAction IMC - Disability Benefits & Planning - Annette Hines and Mark Worthington](https://www.mitoaction.org/resources/2021-mitoaction-imc-disability-benefits-planning-annette-hines-and-mark-worthington/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/c68S0MBqavo **Resource Type:** IMC, IMC 2021 --- ### [2021 MitoAction International Metabolic Conference - Introduction & Welcome - Dr. Jerry Vockley](https://www.mitoaction.org/resources/2021-mitoaction-international-metabolic-conference-introduction-welcome-dr-jerry-vockley/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/YUk8TScroWI 2021 **Resource Type:** IMC, IMC 2021 --- ### [2021 MitoAction International Metabolic Conference - Friday Kick-Off - Kira Mann and Paul Harty](https://www.mitoaction.org/resources/2021-mitoaction-international-metabolic-conference-friday-kick-off-kira-mann-and-paul-harty/) **Published:** January 18, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") https://youtu.be/ik9vgc_Tjss **Resource Type:** IMC, IMC 2021 --- ### [Community Update: Fatty Acid Oxidation Treatments & Growing Options](https://www.mitoaction.org/resources/community-update-fatty-acid-oxidation-treatments-growing-options/) **Published:** October 14, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Dr. Jerry Vockley provides updates on the latest in therapy development for the FAOD community at the 2022 International Metabolic Conference. https://youtu.be/t4nKk0p3gQw **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD), Treatments **Resource Type:** IMC --- ### [Charting the Future -- What PDCD Teaches Us About Mitochondrial Disease](https://www.mitoaction.org/resources/pdcd/) **Published:** September 9, 2020 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Join MitoAction and Dr. Rebecca Ganetzsky, the Asst. Professor of Pediatrics at the University of Pennsylvania and an attending physician in the Human Genetics Division at the Children’s Hospital of Philadelphia (CHOP) for our September Monthly Mito Expert Series presentation titled Charting the Future — What PDCD Teaches Us About Mitochondrial Disease! **Resource Categories:** Pyruvate Dehydrogenase Complex Deficiency (PCDC) **Resource Type:** Expert Series --- ### [Meet Devin the Genetic Counselor and Mito Patient](https://www.mitoaction.org/resources/meet-devin-the-genetic-counselor-and-mito-patient/) **Published:** September 8, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **ENERGY IN ACTION – EPISODE 063** Meet Devin the Genetic Counselor and Mito Patient Devin Shuman is a Genetic Counselor based outside of Seattle, Washington. At age 16, she was diagnosed with Mitochondrial Depletion Syndrome (MDS). ### **EPISODE HIGHLIGHTS** **How are you connected to the mito community?** I was diagnosed with Mitochondrial Depletion Syndrome (MDS) at age 16. My brother went through the diagnostic odyssey and also has the same form of mito, so while I had symptoms my whole life, I had a presumptuous diagnosis until age 16. In college, I attended a genetic counseling event that inspired me to become a Genetic Counselor. **Can you share about your work as a Genetic Counselor?** I currently work in telemedicine for a nonprofit called Genetic Support Foundation. The company provides genetic counseling directly to patients without the waitlist most genetic clinics have, and to break down barriers patients typically experience in a non-biased way. My job is to educate patients around their options. **As a clinician, how do you guide families through clinical testing?** My first job out of school was working in genetics at an autism center which taught me a lot about treating symptoms and when testing is or is not right for a patient. Clinical testing can sometimes help with medical management, open the door to clinical trials and connect families with communities. There are expense considerations in addition to weighing how answers will help with medical management and family planning that I help families make decisions around and have conversations about. **LINKS AND RESOURCES MENTIONED** **[Genetic Support Foundation](https://geneticsupportfoundation.org/)** — **[UDN Participant Engagement and Empowerment Resource (PEER) Group](https://undiagnosed.hms.harvard.edu/resources/peer/)** — **Resource Categories:** Care Management, Genetic Counselors **Resource Type:** Podcasts --- ### [Lovevery - Purposeful Play Customized for all Abilities](https://www.mitoaction.org/resources/lovevery-purposeful-play-customized-for-all-abilities/) **Published:** September 15, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **ENERGY IN ACTION – EPISODE 064** Lovevery – Purposeful Play Customized for all Abilities Maral Amani is a Licensed Physical Therapist and the Disability Support Specialist at Lovevery, a toy company that helps families, educators and therapists find the right toys and the right tools to help develop confidence through play. ### EPISODE HIGHLIGHTS **Can you tell us about yourself and your work?** I’m a Physical Therapist, specializing in children ages 0-3 and early intervention. At Lovevery, I’m the Disability Support Specialist for a recently launched program that allows families to purchase play kits without a subscription. Through communicating with me, I’m able to help families choose specific play kits that are best for children with a focus on skill-based development and strength-based development. Families can reach out to me through the website, answer questions about their children, share what skills they’re developing, and I will recommend a play kit that will also include a play guide. **What kits are available for children with mobility issues?** As a Physical Therapist, I focus on big movements, core strengthening, leg strengthening, bearing weight through the arms. For tiny movements, it’s best to put children in a comfortable position to play so they’re reducing the energy demand of holding themselves up so their energy can focus on fine motor movement. If you purchase a play kit that has toys that can’t be used right away or used in the typical way, think about how the toy can be enjoyed with modifications. **What do you recommend for developing executive functioning skills?** My favorite play kit for that is the Inspector Kit with the ball drop box. It comes with balls inside the box, but it rolls out at an angle to the side. There’s auditory feedback from the wooden ball rolling and dropping. I also like using our Bright & Light Play Scarf to cover books and other objects children are interested in. This is good for working on object permanence and executive functioning. **How do families access the Lovevery disability service?** Complete the form or email me at support.specialist@lovevery.com and we can discuss which play kit is right for your child through a one-on-one, personalized experience. We have a disability expert council with a lot of experience working with children with disabilities and they provide a lot of guidance to me to ensure we’re considering multiple angles of each child’s development. We are here for all families and we want families to feel seen and supported. Please email me with any questions you have. **LINKS AND RESOURCES MENTIONED** [**Lovevery**](https://lovevery.com/) — **[The Inspector Play Kit](https://lovevery.com/products/the-play-kits-the-inspector)** — **[The Explorer Play Kit](https://lovevery.com/products/the-play-kits-the-explorer)** — [**Lovevery Disability Service Form**](https://lovevery.com/pages/disability) — [**Lovevery at Target**](https://www.target.com/s?searchTerm=lovevery) — **Resource Type:** Podcasts --- ### [Tara Zier - Stiff Person Syndrome Research Foundation and Finding Your Purpose](https://www.mitoaction.org/resources/tara-zier-stiff-person-syndrome-research-foundation-and-finding-your-purpose/) **Published:** September 21, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **PARENTS AS RARE – EPISODE 065** Tara Zier – Stiff Person Syndrome Research Foundation and Finding Your Purpose Tara Zier is a rare disease patient, mother and the Founder and President of The Stiff Person Syndrome Research Foundation, where the vision is that all people with Stiff Person Syndrome (SPS) receive a prompt diagnosis, compassionate care, effective treatments and a cure. The mission is to raise awareness of SPS, to support research for better treatments and a cure for SPS while strengthening the community through education and collaboration. ### EPISODE HIGHLIGHTS **Can you share your rare disease story?** I came into the rare disease space because I have a rare disease called Stiff Person Syndrome (SPS), which is a rare neurological disease with autoimmune features. I was diagnosed in 2017 after a three year long diagnostic odyssey, going from doctor to doctor and receiving misdiagnosis. **What was it like to get your diagnosis?** I was relieved to have an answer. There was a lot of pressure and anxiety around parenting my children and protecting them from trauma as I went through the diagnostic odyssey, so there was also relief from that. I moved into the education phase to learn about the disease and determine a comprehensive approach to healing and getting better, despite SPS being a progressive disease. **How has your SPS diagnosis impacted your kids?** My kids have a good recollection of what I was like before my diagnosis, so it was hard for me knowing they were witnessing the changes. We became closer through my diagnosis in a lot of ways and I’m honest with them about the unknowns so we can be grateful for each day. **How did you communicate your diagnosis with your children?** I relied on therapists to guide me on what to say and how to say it. I had to decide how much information to give them because the disease is a spectrum condition with different levels of disability. I had to be transparent about not knowing what the future looked like. I let them know that they could research, but that I preferred we do it together so we could talk about it. **Can you share what The Stiff Person Syndrome Research Foundation is doing right now?** We were fortunate to get the Chan Zuckerberg Rare As One grant, which offers three years of funding for organizational capacity for sustainability and networking. They also offer training and support across all facets of running a rare disease nonprofit. Since we’ve received the grant, we’ve expanded our board, brought on three members for our medical advisory board- all experts in SPS. We’re currently in the process of developing our patient contact registry natural history studies. ### LINKS & RESOURCES MENTIONED **[The Stiff Person Syndrome Research Foundation](https://stiffperson.org/)** — [**SPSRF on Facebook**](https://www.facebook.com/TheSPSRF) — **[SPSRF on Twitter](https://twitter.com/TheSPSRF)** — [**SPSRF on Instagram**](https://www.instagram.com/stiff_person_syndrome/) — [https://www.instagram.com/stiff\_person\_syndrome/](https://www.instagram.com/stiff_person_syndrome/) **Resource Type:** Podcasts --- ### [What's It Like Being A Research Patient with the UDN? Ted Perron Shares his Story](https://www.mitoaction.org/resources/whats-it-like-being-a-research-patient-with-the-udn-ted-perron-shares-his-story/) **Published:** October 13, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **ENERGY IN ACTION – EPISODE 067** What’s It Like Being a Research Patient with UDN – Ted Will Tell You In addition to being the host of the Energy in Action Podcast, Stephanie is a mom to three children. Stephanie’s son Ted is the youngest of three siblings with two older sisters. Ted and Stephanie recount the mitochondrial disease journey from their shared mother-and-son perspectives. ### EPISODE HIGHLIGHTS What compels me to host this podcast is my need to find my tribe. As an early adopter of rare disease and mitochondrial dysfunction, I was often alone, never understood and my peers couldn’t relate to me. The internet wasn’t as robust as it is now and social media wasn’t a thing. We were told that Ted was un-treatable and had a 10-12 year expected lifespan. I began researching and found Mito Action. I have found other parents who speak my language, who understand my heartache, my joy and my absolute frantic need to find answers and treatments. In 2013, Ted had a serious illness and was septic from a line infection. For 23 days, Ted’s body would improve and then backslide. It was during this time when we noticed neurological concerns, and Ted had the first of many MRIs. A growth was discovered near Ted’s pituitary gland. With more research, I found a research study happening at the NIH and submitted all the necessary documents. When I heard back from the NIH, they wanted to see Ted and two weeks later we went to DC. It was there that we became part of the mini-study and the Undiagnosed Disease Network. For the first year and a half of being part of the mini-study, we did a lot of back and forth from Minnesota to DC where we would stay for two or three days. It was during one of those visits where they started realizing that Ted’s immune system was a bigger piece of the diagnosis puzzle. Ted was getting super flu shots and a pneumonia vaccine every year, which most people usually get once every five to 10 years. It was also confirmed that Ted had a tumor on his pituitary gland and he started developing side effects. After graduating high school and enrolling in a local community college, Ted’s pituitary tumor started affecting him at work and school. He began experiencing dizziness, headaches, migraines, loss of appetite, memory loss, and he lost over 20 pounds in less than a month. After surgery to remove the surgery, there’s been no new growth or evidence of the tumor after a year. **Resource Categories:** Patient Stories **Resource Type:** Podcasts --- ### [Live from the 2022 Global Genes Rare Patient Advocacy Summit with Tim McLerran, Head of Product, Medical Intelligence One, Inc](https://www.mitoaction.org/resources/live-from-the-2022-global-genes-rare-patient-advocacy-summit-with-tim-mclerran-head-of-product-medical-intelligence-one-inc/) **Published:** October 20, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **PARENTS AS RARE – EPISODE 068** Special Episode – Live from the 2022 Global Genes Rare Patient Advocacy Summit with Tim McLerran, Head of Product, Medical Intelligence One, Inc. Tim McLerran is the Co-Founder and Head of Product at Medical Intelligence One, where the mission is to care for patients based on their own deeply informative data with wisdom derived from a partnership between human and machine intelligence trained on data from billions of other humans and all of the world’s medical knowledge. Tim is also launching and hosting a show called Diagnostic Odysseys, where they dive into patient stories in hopes of shortening the diagnostic odysseys patients endure. ### EPISODE HIGHLIGHTS **What are your thoughts on patient care and face-to-face time?** I got into medicine because I wanted to have a relationship with my patients. Coming through training, I could see that was not the world I was coming into, which in part is why I decided to change my career direction and focus instead on something more connected. **How has your medical career transitioned into your role with Medical Intelligence One?** While researching in medical school to develop methods of rapidly scanning blood, we generated large data sets of thousands of people. There was a moment that I remember staring at the numbers and realizing human minds need help from machine minds to make full use of the data. That made an impression on me, and through my clinical training, additional factors came together that inspired me to consider taking a deeper dive into bridging human and machine intelligence in medicine. I went from the clinical track to full time researching, attending conferences, reading books and reaching out to mentors. **Can you tell us about Enola?** Medical data is organized and stored in the electronic medical records system in a way that isn’t conducive to downstream analysis and there are better ways to organize data. A colleague and I turned our attention to rare diseases and building a system where a patients can enter clinical findings, discover diseases associated with clinical findings and narrow results based on additional related findings. Once this product is developed and launched, it will be available to patients directly. ### LINKS & RESOURCES MENTIONED [**Medical Intelligence One**](https://www.mi1.ai/) — [**Once Upon a Gene Podcast**](https://effieparks.com/podcast) — [**Enola**](https://www.mi1.ai/enola) — [**Tim McLerran on Linkedin**](https://www.linkedin.com/in/tim-mclerran/) — [**Tim McLerran on Instagram**](https://www.instagram.com/p/Cj0TSFhuoVo/) — **Resource Categories:** Day-to-Day with Mito, Patient Stories **Resource Type:** Podcasts --- ### [Granting Wishes One Trip at a Time](https://www.mitoaction.org/resources/granting-wishes-one-trip-at-a-time/) **Published:** November 2, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **ENERGY IN ACTION – EPISODE 069** Give Kids the World with Justin Kiser Justin Kiser is a dad to Riley, who is five years old and has a rare form of mitochondrial disease. The Kiser family was a recipient of a Mito Action and Give Kids the World wish trip. Justin shares details about their trip and what it meant to their family. ### EPISODE HIGHLIGHTS **Can you tell us about yourself and your family?** I’m a husband and father of four. We came into the mito family through my youngest daughter who has a rare mitochondrial disorder called ECHS1. She was diagnosed about three years ago through genetic markers after being born to her biological parents addicted to substances. We’re not sure if her disease was hereditary or environmental. **What was your experience as a recipient family of a Give Kids the World trip?** It was amazing. The fact that everything was paid for, not just for Riley, but for our whole family of six shocked me. The trip wasn’t just monumental for Riley- it was amazing for all of us and we had a great time together as a family. The resort was very clean, the villas were spacious enough for everyone, and everything was organized really well. We visited each Disney park, both Universal parks and Sea World. Everywhere we went, we were treated like royalty and there was so much care, love and compassion extended to Riley. **What was Riley’s favorite part of the wish trip?** Her favorite part was being able to eat ice cream all day, even for breakfast. A lot of her favorite parts of the trip was at the Give Kids the World resort, seeing the star fairy and having her star placed at the castle. ### LINKS AND RESOURCES MENTIONED Give Kids the World — Trip Wish Nomination — **Resource Categories:** Caregivers & Family **Resource Type:** Podcasts --- ### [Meeting My MELAS Mito Friend](https://www.mitoaction.org/resources/meeting-my-melas-mito-friend/) **Published:** November 17, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") **PARENTS AS RARE – EPISODE 070** Meeting My MELAS Mito Friend – Elizabeth Wood I met Elizabeth Wood, a fellow mito patient, through connections at Mito Action. Elizabeth was the first person from the mito and rare disease communities that I was fortunate enough to meet in person. I was grateful to meet with her, discussing being rare disease parents and mitochondrial disease. I learned a lot from our conversation and reuniting to record this podcast was just as helpful. ### EPISODE HIGHLIGHTS **Can you share about yourself and your journey?** I’m still on the diagnostic odyssey with a suspected diagnosis of Mitochondrial Encephalopathy, Lactic Acidosis, and Stroke-like episodes (MELAS). My journey has been long-term and I’ve struggled with symptoms my entire life. I recently gave up my professional life as a researcher at a think tank where I did policy work and advising. I’m a single parent with a child with special needs and rare conditions. **What is it like being a parent with a rare disease and parenting a child with a rare disease?** My daughter has 16p11.2 deletion syndrome which causes intellectual disability, developmental delays, cardiac issues and epilepsy. She has another rare disease called alternating hemiplegia of childhood, an unpredictable neurological disorder. The physical requirements required of me to lift and care for her when she can’t stand, walk or eat is becoming harder as she grows. **How do you interact with your daughter when you can’t be as active as you’d like?** There are activities I would have never thought to do with my daughter if it weren’t for our limitations. When neither of us feels like doing anything, we can still have fun and we make sure to carve out special time together every day. **How do you create special time to bond with your daughter?** It varies day-to-day depending on what we’re up for, but a lot of our special time is indoors at the end of the day. If I can’t hold a book up for her to read, we will work together to recite our own story and determine what happens through using mad libs. We’ve started recording some of them to have later because they’re special. **What benefits are you seeing for yourself and your daughter as a result of seeing a physiatrist?** This is my new favorite medical professional because they’re helpful and solution-oriented. For us, it’s been a much different medical experience. Appointments are concrete, the physical exams and testing has led to actual insight into what’s happening in our bodies. ### LINKS & RESOURCES MENTIONED No Time Like the Future: An Optimist Considers Mortality – Michael J. Fox https://www.amazon.com/Time-Like-Future-Considers-Mortality/dp/1250265614 Mitochondrial Myopathy Encephalopathy Lactic Acidosis and Stroke-Like Episodes (MELAS) **Resource Categories:** Understanding Mito **Resource Type:** Podcasts --- ### [INFORM & FAOD Community Update](https://www.mitoaction.org/resources/inform-faod-community-update/) **Published:** August 5, 2020 **Author:** Russell Weller **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD) **Resource Type:** IMC --- ### [Infection, Immunity and FAOD](https://www.mitoaction.org/resources/infection-immunity-and-faod/) **Published:** August 5, 2020 **Author:** Russell Weller **Resource Categories:** Fatty Acid Oxidation Disorder (FAOD), Immune Function **Resource Type:** IMC --- ### [Weekly Support Calls](https://www.mitoaction.org/resources/friday-support-calls/) **Published:** August 20, 2018 **Author:** mitoaction --- ### [MyMito App App](https://www.mitoaction.org/resources/mitoaction-mobile-app/) **Published:** August 20, 2018 **Author:** mitoaction --- ### [Understanding the New Recommendations on the Safety of Drug Use in Patients with a Primary Mitochondrial Disease](https://www.mitoaction.org/resources/understanding-the-new-recommendations-on-the-safety-of-drug-use-in-patients-with-a-primary-mitochondrial-disease/) **Published:** November 10, 2022 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") #### “Understanding the New Recommendations on the Safety of Drug Use in Patients with a Primary Mitochondrial Disease” Clinical guidance is often sought when prescribing drugs for patients with primary mitochondrial disease. Theoretical considerations concerning drug safety in patients with mitochondrial disease may lead to unnecessary withholding of a drug in a situation of clinical need. The aim of this new study was to develop consensus on safe medication use in patients with a primary mitochondrial disease. The study and updated Safety of Drug Use list can be viewed [here](https://www.mitoaction.org/medicationsafety/). ![](https://www.mitoaction.org/wp-content/uploads/2020/02/Amel-Karaa-Expert-Series-1.png) #### About the Speaker Dr. Amel Karaa is a board-certified internist and clinical geneticist, director of the mitochondrial disease programs at the Massachusetts General Hospital in Boston (The Mito Clinic). She received an international baccalaureate in biology and chemistry (magna cum laude) from the Franzoesiches Gymnasium in Berlin and a medical degree (summa cum laude) from the Universite of Medicine et Pharmacy de Tunis in Tunisia. She has also completed her internal medicine residency and clinical genetic and metabolism fellowship through Harvard-wide programs. She received the 2013 United Mitochondrial Disease Foundation (UMDF) Fellowship and is currently overseeing clinical care for pediatric and adult mitochondrial disease patients and conducting clinical research and clinical trials for mitochondrial disease. She was elected president of the Mitochondrial medicine Society in June of 2018 and sits on the scientific and medical board of the Mitochondrial Disease Action Committee (MitoAction) and the United Mitochondrial Disease Foundation (UMDF). Dr. Karaa is also a founder and a board member of newly launched Mitochondrial Care Network (MCN), a US-wide network developing centers of excellence for mitochondrial disease and a principal site investigator for the North American Mitochondrial Disease Consortium (NAMDC). She is committed to being an advocate for her mitochondrial disease patients and their families, to educate health care providers in recognizing and treating mitochondrial patients within the community and to be a catalyst for bringing a much-needed cure to this population of patients. --- ## Products ### [Pom-Pom MitoAction Beanie](https://www.mitoaction.org/product/mitoaction-pom-pom-beanie/) **Published:** November 25, 2020 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Expand your wardrobe with a classic embroidered beanie. Finished with a pom-pom on top, it offers tons of warmth and comfort, and is destined to find its way into all your favorite cold-weather looks. • 100% acrylic • One size fits all • 12” (30.5 cm) knit • Fold-over 3” (7.6 cm) cuff • Pom-pom on top **Product categories:** MitoAction --- ### [Liney's Lovies Black Glossy Mug](https://www.mitoaction.org/product/lineys-lovies-black-glossy-mug/) **Published:** September 20, 2024 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This cupboard essential is sturdy, sleek, and perfect for your morning java or afternoon tea. • Ceramic • 11 oz mug dimensions: height 3.85″ (9.8 cm), diameter 3.35″ (8.5 cm) • 15 oz mug dimensions: height 4.7″ (12 cm), diameter 3.35″ (8.5 cm) • Glossy finish • NOT dishwasher or microwave safe • Hand-wash only This product is made especially for you as soon as you place an order, which is why it takes us a bit longer to deliver it to you. Making products on demand instead of in bulk helps reduce overproduction, so thank you for making thoughtful purchasing decisions! **Product categories:** Liney's Lovies --- ### [Liney's Lovies Unisex Long Sleeve Tee](https://www.mitoaction.org/product/lineys-lovies-unisex-long-sleeve-tee/) **Published:** September 20, 2024 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Enrich your wardrobe with a versatile long sleeve tee. For a casual look, combine it with your favorite jeans, and layer it with a button-up shirt, a zip-up hoodie, or a snazzy jacket. Dress it up with formal trousers or chinos to achieve a more professional look. • 100% airlume combed ring-spun cotton • Heather colors are 52% combed and ring-spun cotton, 48% polyester • Athletic Heather is 90% combed and ring-spun cotton, 10% polyester • Fabric weight: 4.2 oz./yd.² (142.4 g/m²) • 32 singles • Regular fit • Side-seamed construction • Crew neck • Cover-stitched collar • 2″ (5 cm) ribbed cuffs • Blank product sourced from Nicaragua, Honduras, or the US This product is made especially for you as soon as you place an order, which is why it takes us a bit longer to deliver it to you. Making products on demand instead of in bulk helps reduce overproduction, so thank you for making thoughtful purchasing decisions! **Product categories:** Liney's Lovies --- ### [Liney's Lovies Unisex midweight hoodie](https://www.mitoaction.org/product/lineys-lovies-unisex-midweight-hoodie/) **Published:** September 20, 2024 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Looking for the perfect high-quality hoodie? This unisex hoodie is a mix of comfort and function. Soft and cozy on the inside, sleek and stylish on the outside. • Unisex fit • 80% cotton, 20% polyester blend fleece • 100% cotton face • Fabric weight: 8.5 oz./yd² (280 g/m²) • Jersey-lined hood • Split stitch double-needle sewing on all seams • Twill neck tape • 1 × 1 ribbing for cuffs and waistband • Metal eyelets • Blank product sourced from Pakistan This product is made especially for you as soon as you place an order, which is why it takes us a bit longer to deliver it to you. Making products on demand instead of in bulk helps reduce overproduction, so thank you for making thoughtful purchasing decisions! **Product categories:** Liney's Lovies --- ### [Liney's Lovies Unisex t-shirt](https://www.mitoaction.org/product/unisex-t-shirt/) **Published:** September 20, 2024 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Experience the best of American-made quality and style with this unisex t-shirt. Get yours today and show your patriotism in style! • Solid colors are 100% Airlume combed and ring-spun cotton (Heather colors contain polyester) • Fabric weight: 4.2 oz./yd.² (142 g/m²) • Pre-shrunk fabric • Side-seamed construction • Shoulder-to-shoulder taping • Blank product sourced from the US This product is made especially for you as soon as you place an order, which is why it takes us a bit longer to deliver it to you. Making products on demand instead of in bulk helps reduce overproduction, so thank you for making thoughtful purchasing decisions! **Product categories:** Liney's Lovies --- ### [Cuffed MitoAction Beanie](https://www.mitoaction.org/product/cuffed-mitoaction-beanie/) **Published:** November 25, 2020 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A snug, form-fitting beanie. It’s not only a great head-warming piece but a staple accessory in anyone’s wardrobe. 100% Turbo Acrylic 12″ in length Hypoallergenic Unisex style **Product categories:** MitoAction --- ### [Embroidered MitoAction Backpack](https://www.mitoaction.org/product/embroidered-mitoaction-backpack-2/) **Published:** November 25, 2020 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Featuring a stunning design along a padded back and adjustable shoulder straps, this embroidered backpack combines functionality and good looks. Use the two-way zipped main compartment to carry anything from a 15-inch laptop to books, and keep your phone and keys safe in the front zip pocket. • 100% polyester, 600D • Two-tone fabric • Dimensions: H 16.5” (42 cm), W 12.2” (31 cm), D 8.3” (21 cm) • Capacity: 4.7 gallons (18 l) • Top carry handle • Front zip pocket • Top zipper with 2 sliders and zipper pullers • Large main compartment with padded back panel • Padded adjustable shoulder straps in matching fabric • Blank product sourced from China **Product categories:** MitoAction --- ### [MitoAction Mug with Color Inside](https://www.mitoaction.org/product/mitoaction-mug-with-color-inside-2/) **Published:** November 25, 2020 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Add a splash of color to your morning coffee or tea ritual! These ceramic mugs not only have a beautiful design on them, but also a colorful rim, handle, and inside, so the mug is bound to spice up your mug rack. • Ceramic • Height: 3.85″ (9.8 cm) • Diameter: 3.35″ (8.5 cm) • White print area • Color rim, inside, and handle • Dishwasher and microwave safe **Product categories:** MitoAction --- ### [MitoAction Socks](https://www.mitoaction.org/product/mitoaction-socks-2/) **Published:** November 25, 2020 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") These socks are extra comfortable thanks to their cushioned bottom. The foot is black with artwork printed along the leg with crisp, bold colors that won’t fade. • 60% nylon/22% cotton/18% spandex • Crew length • Cushioned bottom • Ribbed leg • Cold wash with like colors and hang dry **Product categories:** MitoAction --- ### [Unisex Tie-Dye MitoAction Hoodie](https://www.mitoaction.org/product/unisex-tie-dye-mitoaction-hoodie/) **Published:** August 20, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") If you’re looking for a trendy, one-of-a-kind clothing item, this Champion tie-dye hoodie is the one! It’s almost impossible to create two similar items during the garment-dyeing process, so every piece has a unique touch to it. • 82% cotton, 18% poly fleece • Fabric weight: 12 oz/yd² (406.9 g/m²) • Unique scrunch-dye, tie-dye pattern • Reverse Weave® cross-grain cut resists shrinkage • Two-ply hood with matching drawcords • 1×1 rib knit side panels, sleeve cuffs, and bottom hem • Front pouch pocket • Woven label at the back of the neck • Embroidered “C” logo on left sleeve • Blank product sourced from El Salvador **Product categories:** MitoAction --- ### [Distressed MitoAction "Dad" Hat](https://www.mitoaction.org/product/distressed-mitoaction-dad-hat/) **Published:** January 20, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Expand your headwear collection with this fashionable dad hat. With a slightly distressed brim and crown fabric, it’ll add just the right amount of edge to your look. For a quick and easy outfit pair it with slacks, your favorite jeans, and a sports tee. • 100% pre-shrunk cotton twill • Soft crown • 6 sewn eyelets • 6 stitched rows on the brim • 6-panel unstructured cap with a low profile • Seamed front panel without buckram • Adjustable hook and loop closure **Product categories:** MitoAction --- ### [Cuffed MitoAction Tie Dye Beanie](https://www.mitoaction.org/product/cuffed-mitoaction-tie-dye-beanie/) **Published:** September 27, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Bring some color to your wardrobe with this 100% cotton tie-dye beanie. It’s stylish, durable, and will add extra pizzazz to any outfit! • 100% cotton • Cuffed beanie • 8.3″ (21 cm) in length • Regular fit • 18.11″–21.26″ (46 cm–54 cm) • Blank product sourced from China **Product categories:** MitoAction --- ### [MitoAction Tie Dye Hat](https://www.mitoaction.org/product/mitoaction-tie-dye-hat/) **Published:** July 2, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Bring fun and color to your wardrobe with this 100% cotton tie dye hat. It’s stylish, super trendy, and will add extra pizzazz to any outfit. • 100% cotton • Unstructured, 6-panel, low profile • Pre-curved visor • Tri-glide buckle closure • One size fits most • Head circumference: 20½″–24½″ (52 cm–62 cm) **Product categories:** MitoAction --- ### [Unisex Zip MitoAction Hoodie](https://www.mitoaction.org/product/unisex-zip-mitoaction-hoodie/) **Published:** November 25, 2020 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") For when you get chilly on a summer evening by the lake, or simply need something comfy to throw on, this lightweight unisex zip hoodie with a modern fit, hood, front zip, and a kangaroo pocket is the way to go. • 50% polyester, 25% airlume combed and ring-spun cotton, 25% rayon • Unisex fit • Hooded • Kangaroo pocket • Side seamed For men, we suggest ordering a size up from your usual size. **Product categories:** MitoAction --- ### [Unisex MitoAction Hoodie](https://www.mitoaction.org/product/unisex-mitoaction-hoodie/) **Published:** November 25, 2020 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A soft and comfy unisex hoodie that fits all your hoodie needs. The fleece fabric makes it a great partner all year round, be it a summer evening on the beach, or a Christmas dinner in a mountain cabin. • 52% airlume combed and ring-spun cotton, 48% poly fleece\* • Hood • Side seamed • Retail fit \*Heather Colors: 60% airlume combed and ring-spun cotton, 40% poly fleece The male model is wearing size M. He’s 6.0 feet (183 cm) tall, chest circumference 42.5″ (108 cm), waist circumference 33.5″ (85 cm). The female model is wearing a size M. She’s 5.8 feet (178 cm) tall, chest circumference 34.6″ (88 cm), waist circumference 27.1″ (69 cm) and hip circumference 37.7″ (96 cm). **Product categories:** MitoAction --- ### [MitoAction Quarter Zip Pullover](https://www.mitoaction.org/product/mitoaction-quarter-zip-pullover/) **Published:** April 12, 2022 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Jumping and squatting your way through an intense workout is difficult enough, so why not make it easier with comfy clothing that embraces your movement? The eco-friendly pullover is lightweight and comfortable and has sweat-wicking qualities that will keep your body cool and dry. • 100% recycled polyester • Regular fit • Self-mock collar, bottom hem, and cuffs • UPF 50+ protection • Hydrophilic finish • Contrast color adidas logo on the left sleeve **Product categories:** MitoAction --- ### [Youth Short Sleeve 'I Wear Green for My Mito Warrior' T-Shirt](https://www.mitoaction.org/product/youth-short-sleeve-i-wear-green-for-my-mito-warrior-t-shirt/) **Published:** August 20, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This is the tee that you’ve been looking for, and it’s bound to become a favorite in any youngster’s wardrobe. It’s light, soft, and comes with a unique design that stands out from the crowd wherever you go! • 100% combed and ring-spun cotton • Heather colors are 52% combed and ring-spun cotton, 48% polyester • Athletic Heather is 90% combed and ring-spun cotton, 10% polyester • Fabric weight: 4.2 oz/yd² (142 g/m2) • Pre-shrunk fabric • 32 singles • Relaxed unisex fit • Side-seamed construction • Blank product sourced from Nicaragua, the US, or Honduras **Product categories:** Mito Awareness --- ### [Short-Sleeve Unisex 'I Wear Green for My Son' T-Shirt](https://www.mitoaction.org/product/short-sleeve-unisex-i-wear-green-for-my-son-t-shirt/) **Published:** August 20, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This t-shirt is everything you’ve dreamed of and more. It feels soft and lightweight, with the right amount of stretch. It’s comfortable and flattering for both men and women. • 100% combed and ring-spun cotton (Heather colors contain polyester) • Ash color is 99% combed and ring-spun cotton, 1% polyester • Heather colors are 52% combed and ring-spun cotton, 48% polyester • Athletic and Black Heather are 90% combed and ring-spun cotton, 10% polyester • Heather Prism colors are 99% combed and ring-spun cotton, 1% polyester • Fabric weight: 4.2 oz (142 g/m2) • Pre-shrunk fabric • Side-seamed construction • Shoulder-to-shoulder taping **Product categories:** Mito Awareness --- ### [Unisex Embroidered Champion Packable MitoAction Jacket](https://www.mitoaction.org/product/unisex-embroidered-champion-packable-mitoaction-jacket/) **Published:** February 18, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Protect yourself from the elements with this Champion packable jacket. This wind and rain resistant polyester jacket with a detailed embroidery design has a practical hood, front kangaroo pocket, and zipped pouch pocket which you can pull out and use to scrunch the jacket into for convenient storage. • 100% polyester micro poplin • Wind and rain resistant • Half zip pullover with a hood • Front kangaroo pocket • Hidden zipped pouch pocket • Packable in the zipped pouch pocket • Adjustable bungee draw cord at hood and bottom hem • Elastic cuffs • Embroidered “C” logo on the left sleeve **Product categories:** Mito Awareness --- ### [Short-Sleeve Unisex 'I Wear Green for My Sister' T-Shirt Copy](https://www.mitoaction.org/product/short-sleeve-unisex-i-wear-green-for-my-sister-t-shirt-copy/) **Published:** September 12, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This t-shirt is everything you’ve dreamed of and more. It feels soft and lightweight, with the right amount of stretch. It’s comfortable and flattering for both men and women. • 100% combed and ring-spun cotton (Heather colors contain polyester) • Ash color is 99% combed and ring-spun cotton, 1% polyester • Heather colors are 52% combed and ring-spun cotton, 48% polyester • Athletic and Black Heather are 90% combed and ring-spun cotton, 10% polyester • Heather Prism colors are 99% combed and ring-spun cotton, 1% polyester • Fabric weight: 4.2 oz (142 g/m2) • Pre-shrunk fabric • Side-seamed construction • Shoulder-to-shoulder taping **Product categories:** Mito Awareness --- ### [Unisex FAOD Hoodie](https://www.mitoaction.org/product/unisex-faod-hoodie/) **Published:** November 25, 2020 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A soft and comfy unisex hoodie that fits all your hoodie needs. The fleece fabric makes it a great partner all year round, be it a summer evening on the beach, or a Christmas dinner in a mountain cabin. • 52% airlume combed and ring-spun cotton, 48% poly fleece\* • Hood • Side seamed • Retail fit \*Heather Colors: 60% airlume combed and ring-spun cotton, 40% poly fleece The male model is wearing size M. He’s 6.0 feet (183 cm) tall, chest circumference 42.5" (108 cm), waist circumference 33.5" (85 cm). The female model is wearing a size M. She’s 5.8 feet (178 cm) tall, chest circumference 34.6" (88 cm), waist circumference 27.1" (69 cm) and hip circumference 37.7" (96 cm). **Product categories:** FAOD Awareness --- ### [Youth Short Sleeve FAOD T-Shirt](https://www.mitoaction.org/product/youth-short-sleeve-faod-t-shirt/) **Published:** November 25, 2020 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This is the tee that you’ve been looking for, and it’s bound to become a favorite in any youngster’s wardrobe. It’s light, soft, and comes with a unique design that stands out from the crowd wherever you go! • 100% soft jersey cotton • Heather colors are 52% combed and ring-spun cotton, 48% polyester • Athletic Heather is 90% combed and ring-spun cotton, 10% polyester • Pre-shrunk fabric • Side-seamed • Relaxed unisex fit \*Heather forest is 52% Airlume combed and ring-spun cotton, 48% poly / Athletic Heather is 90% Airlume combed and ring-spun cotton, 10% poly **Product categories:** FAOD Awareness --- ### [Short-Sleeve Unisex FAOD T-Shirt](https://www.mitoaction.org/product/short-sleeve-unisex-faod-t-shirt/) **Published:** November 25, 2020 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This t-shirt is everything you’ve dreamed of and more. It feels soft and lightweight, with the right amount of stretch. It’s comfortable and flattering for both men and women. • 100% combed and ring-spun cotton (Heather colors contain polyester) • Ash color is 99% combed and ring-spun cotton, 1% polyester • Heather colors are 52% combed and ring-spun cotton, 48% polyester • Athletic and Black Heather are 90% combed and ring-spun cotton, 10% polyester • Heather Prism colors are 99% combed and ring-spun cotton, 1% polyester • Fabric weight: 4.2 oz (142 g/m2) • Pre-shrunk fabric • Shoulder-to-shoulder taping • Side-seamed **Product categories:** FAOD Awareness --- ### [Short-Sleeve Mito Support Squad Unisex T-Shirt](https://www.mitoaction.org/product/mito-support-squad-short-sleeve-unisex-t-shirt/) **Published:** July 12, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This t-shirt is everything you’ve dreamed of and more. It feels soft and lightweight, with the right amount of stretch. It’s comfortable and flattering for both men and women. • 100% combed and ring-spun cotton (Heather colors contain polyester) • Ash color is 99% combed and ring-spun cotton, 1% polyester • Heather colors are 52% combed and ring-spun cotton, 48% polyester • Athletic and Black Heather are 90% combed and ring-spun cotton, 10% polyester • Heather Prism colors are 99% combed and ring-spun cotton, 1% polyester • Fabric weight: 4.2 oz (142 g/m2) • Pre-shrunk fabric • Side-seamed construction • Shoulder-to-shoulder taping **Product categories:** Mito Awareness --- ### [Short-Sleeve Unisex 'I Wear Green for My Mito Warrior' T-Shirt](https://www.mitoaction.org/product/short-sleeve-unisex-i-wear-green-for-my-mito-warrior-t-shirt/) **Published:** August 20, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This t-shirt is everything you’ve dreamed of and more. It feels soft and lightweight, with the right amount of stretch. It’s comfortable and flattering for both men and women. • 100% combed and ring-spun cotton (Heather colors contain polyester) • Ash color is 99% combed and ring-spun cotton, 1% polyester • Heather colors are 52% combed and ring-spun cotton, 48% polyester • Athletic and Black Heather are 90% combed and ring-spun cotton, 10% polyester • Heather Prism colors are 99% combed and ring-spun cotton, 1% polyester • Fabric weight: 4.2 oz (142 g/m2) • Pre-shrunk fabric • Side-seamed construction • Shoulder-to-shoulder taping **Product categories:** Mito Awareness --- ### [Short-Sleeve Unisex 'I Wear Green for My Dad' T-Shirt](https://www.mitoaction.org/product/short-sleeve-unisex-i-wear-green-for-my-dad-t-shirt/) **Published:** August 20, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This t-shirt is everything you’ve dreamed of and more. It feels soft and lightweight, with the right amount of stretch. It’s comfortable and flattering for both men and women. • 100% combed and ring-spun cotton (Heather colors contain polyester) • Ash color is 99% combed and ring-spun cotton, 1% polyester • Heather colors are 52% combed and ring-spun cotton, 48% polyester • Athletic and Black Heather are 90% combed and ring-spun cotton, 10% polyester • Heather Prism colors are 99% combed and ring-spun cotton, 1% polyester • Fabric weight: 4.2 oz (142 g/m2) • Pre-shrunk fabric • Side-seamed construction • Shoulder-to-shoulder taping **Product categories:** Mito Awareness --- ### [Short-Sleeve Unisex 'I Wear Green for My Mom' T-Shirt](https://www.mitoaction.org/product/short-sleeve-unisex-i-wear-green-for-my-mom-t-shirt/) **Published:** August 20, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This t-shirt is everything you’ve dreamed of and more. It feels soft and lightweight, with the right amount of stretch. It’s comfortable and flattering for both men and women. • 100% combed and ring-spun cotton (Heather colors contain polyester) • Ash color is 99% combed and ring-spun cotton, 1% polyester • Heather colors are 52% combed and ring-spun cotton, 48% polyester • Athletic and Black Heather are 90% combed and ring-spun cotton, 10% polyester • Heather Prism colors are 99% combed and ring-spun cotton, 1% polyester • Fabric weight: 4.2 oz (142 g/m2) • Pre-shrunk fabric • Side-seamed construction • Shoulder-to-shoulder taping **Product categories:** Mito Awareness --- ### [Short-Sleeve Unisex 'I Wear Green for My Sister' T-Shirt](https://www.mitoaction.org/product/short-sleeve-unisex-i-wear-green-for-my-sister-t-shirt/) **Published:** August 20, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This t-shirt is everything you’ve dreamed of and more. It feels soft and lightweight, with the right amount of stretch. It’s comfortable and flattering for both men and women. • 100% combed and ring-spun cotton (Heather colors contain polyester) • Ash color is 99% combed and ring-spun cotton, 1% polyester • Heather colors are 52% combed and ring-spun cotton, 48% polyester • Athletic and Black Heather are 90% combed and ring-spun cotton, 10% polyester • Heather Prism colors are 99% combed and ring-spun cotton, 1% polyester • Fabric weight: 4.2 oz (142 g/m2) • Pre-shrunk fabric • Side-seamed construction • Shoulder-to-shoulder taping **Product categories:** Mito Awareness --- ### [Short-Sleeve Unisex 'I Wear Green for My Friend" T-Shirt](https://www.mitoaction.org/product/short-sleeve-unisex-i-wear-green-for-my-friend-t-shirt/) **Published:** August 20, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This t-shirt is everything you’ve dreamed of and more. It feels soft and lightweight, with the right amount of stretch. It’s comfortable and flattering for both men and women. • 100% combed and ring-spun cotton (Heather colors contain polyester) • Ash color is 99% combed and ring-spun cotton, 1% polyester • Heather colors are 52% combed and ring-spun cotton, 48% polyester • Athletic and Black Heather are 90% combed and ring-spun cotton, 10% polyester • Heather Prism colors are 99% combed and ring-spun cotton, 1% polyester • Fabric weight: 4.2 oz (142 g/m2) • Pre-shrunk fabric • Side-seamed construction • Shoulder-to-shoulder taping **Product categories:** Mito Awareness --- ### [Short-Sleeve Unisex 'I Wear Green for My FAOD Warrior' T-Shirt](https://www.mitoaction.org/product/short-sleeve-unisex-i-wear-green-for-my-faod-warrior-t-shirt/) **Published:** August 20, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This t-shirt is everything you’ve dreamed of and more. It feels soft and lightweight, with the right amount of stretch. It’s comfortable and flattering for both men and women. • 100% combed and ring-spun cotton (Heather colors contain polyester) • Ash color is 99% combed and ring-spun cotton, 1% polyester • Heather colors are 52% combed and ring-spun cotton, 48% polyester • Athletic and Black Heather are 90% combed and ring-spun cotton, 10% polyester • Heather Prism colors are 99% combed and ring-spun cotton, 1% polyester • Fabric weight: 4.2 oz (142 g/m2) • Pre-shrunk fabric • Side-seamed construction • Shoulder-to-shoulder taping **Product categories:** FAOD Awareness --- ### [Short-Sleeve Unisex 'I Wear Green for My Daughter' T-Shirt](https://www.mitoaction.org/product/short-sleeve-unisex-i-wear-green-for-my-daughter-t-shirt/) **Published:** August 20, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This t-shirt is everything you’ve dreamed of and more. It feels soft and lightweight, with the right amount of stretch. It’s comfortable and flattering for both men and women. • 100% combed and ring-spun cotton (Heather colors contain polyester) • Ash color is 99% combed and ring-spun cotton, 1% polyester • Heather colors are 52% combed and ring-spun cotton, 48% polyester • Athletic and Black Heather are 90% combed and ring-spun cotton, 10% polyester • Heather Prism colors are 99% combed and ring-spun cotton, 1% polyester • Fabric weight: 4.2 oz (142 g/m2) • Pre-shrunk fabric • Side-seamed construction • Shoulder-to-shoulder taping **Product categories:** Mito Awareness --- ### [Short-Sleeve Unisex 'I Wear Green for My Brother' T-Shirt](https://www.mitoaction.org/product/short-sleeve-unisex-i-wear-green-for-my-brother-t-shirt/) **Published:** August 20, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This t-shirt is everything you’ve dreamed of and more. It feels soft and lightweight, with the right amount of stretch. It’s comfortable and flattering for both men and women. • 100% combed and ring-spun cotton (Heather colors contain polyester) • Ash color is 99% combed and ring-spun cotton, 1% polyester • Heather colors are 52% combed and ring-spun cotton, 48% polyester • Athletic and Black Heather are 90% combed and ring-spun cotton, 10% polyester • Heather Prism colors are 99% combed and ring-spun cotton, 1% polyester • Fabric weight: 4.2 oz (142 g/m2) • Pre-shrunk fabric • Side-seamed construction • Shoulder-to-shoulder taping **Product categories:** Mito Awareness --- ### [Youth Short Sleeve 'I Wear Green for My Mom' T-Shirt](https://www.mitoaction.org/product/youth-short-sleeve-i-wear-green-for-my-mom-t-shirt/) **Published:** August 20, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This is the tee that you’ve been looking for, and it’s bound to become a favorite in any youngster’s wardrobe. It’s light, soft, and comes with a unique design that stands out from the crowd wherever you go! • 100% combed and ring-spun cotton • Heather colors are 52% combed and ring-spun cotton, 48% polyester • Athletic Heather is 90% combed and ring-spun cotton, 10% polyester • Fabric weight: 4.2 oz/yd² (142 g/m2) • Pre-shrunk fabric • 32 singles • Relaxed unisex fit • Side-seamed construction • Blank product sourced from Nicaragua, the US, or Honduras **Product categories:** Mito Awareness --- ### [Youth Short Sleeve 'I Wear Green for My Sister' T-Shirt](https://www.mitoaction.org/product/youth-short-sleeve-i-wear-green-for-my-sister-t-shirt/) **Published:** August 20, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This is the tee that you’ve been looking for, and it’s bound to become a favorite in any youngster’s wardrobe. It’s light, soft, and comes with a unique design that stands out from the crowd wherever you go! • 100% combed and ring-spun cotton • Heather colors are 52% combed and ring-spun cotton, 48% polyester • Athletic Heather is 90% combed and ring-spun cotton, 10% polyester • Fabric weight: 4.2 oz/yd² (142 g/m2) • Pre-shrunk fabric • 32 singles • Relaxed unisex fit • Side-seamed construction • Blank product sourced from Nicaragua, the US, or Honduras **Product categories:** Mito Awareness --- ### [Youth Short Sleeve 'I Wear Green for My Friend' T-Shirt](https://www.mitoaction.org/product/youth-short-sleeve-i-wear-green-for-my-friend-t-shirt/) **Published:** August 20, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This is the tee that you’ve been looking for, and it’s bound to become a favorite in any youngster’s wardrobe. It’s light, soft, and comes with a unique design that stands out from the crowd wherever you go! • 100% combed and ring-spun cotton • Heather colors are 52% combed and ring-spun cotton, 48% polyester • Athletic Heather is 90% combed and ring-spun cotton, 10% polyester • Fabric weight: 4.2 oz/yd² (142 g/m2) • Pre-shrunk fabric • 32 singles • Relaxed unisex fit • Side-seamed construction • Blank product sourced from Nicaragua, the US, or Honduras **Product categories:** Mito Awareness --- ### [Youth Short Sleeve 'I Wear Green for My FAOD Warrior' T-Shirt](https://www.mitoaction.org/product/youth-short-sleeve-i-wear-green-for-my-faod-warrior-t-shirt/) **Published:** August 20, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This is the tee that you’ve been looking for, and it’s bound to become a favorite in any youngster’s wardrobe. It’s light, soft, and comes with a unique design that stands out from the crowd wherever you go! • 100% combed and ring-spun cotton • Heather colors are 52% combed and ring-spun cotton, 48% polyester • Athletic Heather is 90% combed and ring-spun cotton, 10% polyester • Fabric weight: 4.2 oz/yd² (142 g/m2) • Pre-shrunk fabric • 32 singles • Relaxed unisex fit • Side-seamed construction • Blank product sourced from Nicaragua, the US, or Honduras **Product categories:** FAOD Awareness --- ### [Youth Short Sleeve 'I Wear Green for My Dad' T-Shirt](https://www.mitoaction.org/product/youth-short-sleeve-i-wear-green-for-my-dad-t-shirt/) **Published:** August 20, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This is the tee that you’ve been looking for, and it’s bound to become a favorite in any youngster’s wardrobe. It’s light, soft, and comes with a unique design that stands out from the crowd wherever you go! • 100% combed and ring-spun cotton • Heather colors are 52% combed and ring-spun cotton, 48% polyester • Athletic Heather is 90% combed and ring-spun cotton, 10% polyester • Fabric weight: 4.2 oz/yd² (142 g/m2) • Pre-shrunk fabric • 32 singles • Relaxed unisex fit • Side-seamed construction • Blank product sourced from Nicaragua, the US, or Honduras **Product categories:** Mito Awareness --- ### [Youth Short Sleeve 'I Wear Green for My Brother' T-Shirt](https://www.mitoaction.org/product/youth-short-sleeve-i-wear-green-for-my-brother-t-shirt/) **Published:** August 20, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This is the tee that you’ve been looking for, and it’s bound to become a favorite in any youngster’s wardrobe. It’s light, soft, and comes with a unique design that stands out from the crowd wherever you go! • 100% combed and ring-spun cotton • Heather colors are 52% combed and ring-spun cotton, 48% polyester • Athletic Heather is 90% combed and ring-spun cotton, 10% polyester • Fabric weight: 4.2 oz/yd² (142 g/m2) • Pre-shrunk fabric • 32 singles • Relaxed unisex fit • Side-seamed construction • Blank product sourced from Nicaragua, the US, or Honduras **Product categories:** Mito Awareness --- ### [Engraved Silver Bar Chain Mito Warrior Bracelet](https://www.mitoaction.org/product/engraved-silver-bar-chain-mito-warrior-bracelet/) **Published:** August 20, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This engraved bar chain bracelet with a sterling silver pendant can become anything you want it to be, from a meaningful gift for a loved one to a sleek accessory for your own use. The sharp engraving won’t fade for a very long time, making the bracelet a guaranteed favorite in anyone’s jewelry box. • Sterling silver (AG-925) pendant and chain with coating • Nickel-free pendant, chain, and coating • Pendant size: 0.28″ × 1.22″ (7 × 31 mm) • Pendant thickness: 0.02″ (0.5 mm) • Pendant is connected to the chain with open jump rings • Spring ring clasp closure • Packed in an eco-friendly black leatherette-covered box with a magnetic closure and cloth inlay • Blank product sourced from Poland **Product categories:** Mito Awareness --- ### [Short-Sleeve Unisex 'I Wear Green for My Mito Angel' T-Shirt](https://www.mitoaction.org/product/short-sleeve-unisex-i-wear-green-for-my-mito-angel-t-shirt/) **Published:** August 31, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This t-shirt is everything you’ve dreamed of and more. It feels soft and lightweight, with the right amount of stretch. It’s comfortable and flattering for all. • 100% combed and ring-spun cotton (Heather colors contain polyester) • Ash color is 99% combed and ring-spun cotton, 1% polyester • Heather colors are 52% combed and ring-spun cotton, 48% polyester • Athletic and Black Heather are 90% combed and ring-spun cotton, 10% polyester • Heather Prism colors are 99% combed and ring-spun cotton, 1% polyester • Fabric weight: 4.2 oz (142 g/m2) • Pre-shrunk fabric • Side-seamed construction • Shoulder-to-shoulder taping **Product categories:** Mito Awareness --- ### [3/4 Sleeve Raglan 'I Wear Green for My Mito Angel' Shirt](https://www.mitoaction.org/product/3-4-sleeve-raglan-i-wear-green-for-my-mito-angel-shirt/) **Published:** October 4, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A stylish spin on the classic baseball raglan. The combed cotton blend makes it super soft, comfortable, and lightweight. • All solid colors are 100% ring-spun cotton • Heather Grey color is 90% cotton, 10% polyester • Heather Denim color is 50% cotton, 50% polyester • Fabric weight: 4.5 oz/yd² (152.6 g/m²) • Fine knit jersey • 30 singles • ¾ sleeves • Contrast raglan sleeve • Reactive-dyed for longer-lasting color • Prewashed to minimize shrinkage • Tear away label • Blank product sourced from Mexico **Product categories:** Mito Awareness --- ### [Short-Sleeve Unisex Hope T-Shirt](https://www.mitoaction.org/product/short-sleeve-unisex-hope-t-shirt/) **Published:** February 1, 2022 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This t-shirt is everything you’ve dreamed of and more. It feels soft and lightweight, with the right amount of stretch. It’s comfortable and flattering for all. • 100% combed and ring-spun cotton (Heather colors contain polyester) • Ash color is 99% combed and ring-spun cotton, 1% polyester • Heather colors are 52% combed and ring-spun cotton, 48% polyester • Athletic and Black Heather are 90% combed and ring-spun cotton, 10% polyester • Heather Prism colors are 99% combed and ring-spun cotton, 1% polyester • Fabric weight: 4.2 oz (142 g/m2) • Pre-shrunk fabric • Side-seamed construction • Shoulder-to-shoulder taping **Product categories:** Mito Awareness --- ### [Youth Short Sleeve Leopard Peace Love Cure T-Shirt](https://www.mitoaction.org/product/youth-short-sleeve-leopard-peace-love-cure-t-shirt/) **Published:** February 6, 2022 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This is the tee that you’ve been looking for, and it’s bound to become a favorite in any youngster’s wardrobe. It’s light, soft, and comes with a unique design that stands out from the crowd wherever you go! • 100% combed and ring-spun cotton • Heather colors are 52% combed and ring-spun cotton, 48% polyester • Athletic Heather is 90% combed and ring-spun cotton, 10% polyester • Fabric weight: 4.2 oz/yd² (142 g/m2) • Pre-shrunk fabric • 32 singles • Relaxed unisex fit • Side-seamed construction • Blank product sourced from Nicaragua, the US, or Honduras **Product categories:** Mito Awareness --- ### [Unisex Blue Peace Love Cure Hoodie](https://www.mitoaction.org/product/unisex-blue-peace-love-cure-hoodie/) **Published:** February 14, 2022 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Who knew that the softest hoodie you’ll ever own comes with such a cool design. You won’t regret buying this classic streetwear piece of apparel with a convenient pouch pocket and warm hood for chilly evenings. • 100% cotton face • 65% ring-spun cotton, 35% polyester • Front pouch pocket • Self-fabric patch on the back • Matching flat drawstrings • 3-panel hood **Product categories:** Mito Awareness --- ### [Unisex MitoAction Joggers](https://www.mitoaction.org/product/unisex-mitoaction-joggers/) **Published:** November 25, 2020 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Get ready for that 10K run or take it slow in your backyard—these joggers are sure to make you feel comfortable either way. • 60% cotton, 40% polyester pre-shrunk fleece • Fabric weight: 7.2 oz/yd² (244 g/m²) • 1×1 rib cuffs with spandex for stretch and recovery • Elastic waistband with external drawcord • Contrast drawcord and side pockets (all body colors include charcoal gray contrast detailing except black heather, which has black) • Lower rise on the front, longer rise on the backside • Pilling-resistant • Tapered leg **Product categories:** MitoAction --- ### [Unisex MitoAction Piped Fleece Jacket](https://www.mitoaction.org/product/unisex-mitoaction-piped-fleece-jacket/) **Published:** February 18, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Protect yourself from the elements with this fashionable piped fleece jacket. It’s pre-shrunk to last a long time, thus becoming a favorite in your wardrobe. • 100% airlume combed and ring-spun cotton • Fabric weight: 7.5 oz/yd² (254.3 g/m²) • Side kangaroo pockets • Contrast-color piping above the chest • 3″ rib cuffs and bottom band • Raglan sleeves • Cadet collar • Blank product sourced from the US **Product categories:** MitoAction --- ### [Caroline's Team by Korey Lesko 2023 Unisex T-Shirt](https://www.mitoaction.org/product/carolines-team-by-korey-lesko-2023-unisex-t-shirt/) **Published:** August 20, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This t-shirt is everything you’ve dreamed of and more. It feels soft and lightweight, with the right amount of stretch. It’s comfortable and flattering for all. • 100% combed and ring-spun cotton (Heather colors contain polyester) • Fabric weight: 4.2 oz/yd² (142 g/m²) • Pre-shrunk fabric • Side-seamed construction • Shoulder-to-shoulder taping • Blank product sourced from Nicaragua, Mexico, Honduras, or the US This product is made especially for you as soon as you place an order, which is why it takes us a bit longer to deliver it to you. Making products on demand instead of in bulk helps reduce overproduction, so thank you for making thoughtful purchasing decisions! **Product categories:** Team Caroline - Syracuse Energy Walk --- ### [Team MitoAction Ladies’ Muscle Tank](https://www.mitoaction.org/product/team-mitoaction-ladies-muscle-tank/) **Published:** August 2, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This comfortable muscle tank is soft and flowy with low cut armholes for a relaxed look. • 65% polyester, 35% viscose • Athletic Heather is 52% polyester, 48% viscose • Black Heather is 80% rayon, 20% polyester • Fabric weight: 4.2 oz/y² (142 g/m²) • Relaxed fit • Low cut armholes • Curved bottom hem • Side seams • Blank product sourced from Honduras, Nicaragua, the US, or Vietnam This product is made especially for you as soon as you place an order, which is why it takes us a bit longer to deliver it to you. Making products on demand instead of in bulk helps reduce overproduction, so thank you for making thoughtful purchasing decisions! **Product categories:** Team MitoAction --- ### [Team MitoAction Unisex Tank Top](https://www.mitoaction.org/product/team-mitoaction-unisex-tank-top/) **Published:** August 2, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A classic, staple tank top. A timeless classic intended for anyone looking for great quality and softness. • 100% combed and ringspun cotton • Tri-blends are 50% polyester/25% combed/25% ringspun cotton/rayon • Fabric weight: 4.2 oz/yd² (142.40 g/m²), triblends: 3.8 oz/yd² (90.07 g/m²) • 30 singles thread weight • Side-seamed • Blank product sourced from Nicaragua, Honduras, or the US This product is made especially for you as soon as you place an order, which is why it takes us a bit longer to deliver it to you. Making products on demand instead of in bulk helps reduce overproduction, so thank you for making thoughtful purchasing decisions! **Product categories:** Team MitoAction --- ### [Caroline's Team by Korey Lesko 2023 Unisex Hoodie](https://www.mitoaction.org/product/carolines-team-by-korey-lesko-2023-unisex-hoodie/) **Published:** August 20, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Who knew that the softest hoodie you’ll ever own comes with such a cool design. You won’t regret buying this classic streetwear piece of apparel with a convenient pouch pocket and warm hood for chilly evenings. • 100% cotton face • 65% ring-spun cotton, 35% polyester • Front pouch pocket • Self-fabric patch on the back • Matching flat drawstrings • 3-panel hood • Blank product sourced from Pakistan This product is made especially for you as soon as you place an order, which is why it takes us a bit longer to deliver it to you. Making products on demand instead of in bulk helps reduce overproduction, so thank you for making thoughtful purchasing decisions! **Product categories:** Team Caroline - Syracuse Energy Walk --- ## Venues ### [Detroit Country Day School](https://www.mitoaction.org/venue/detroit-country-day-school__trashed/) **Published:** March 13, 2025 **Author:** Russell Weller --- ### [Franklin Park Zoo](https://www.mitoaction.org/venue/franklin-park-zoo/) **Published:** November 29, 2022 **Author:** Russell Weller --- ### [North Andover Country Club](https://www.mitoaction.org/venue/north-andover-country-club/) **Published:** November 29, 2022 **Author:** Russell Weller --- ### [Wills Park - Wacky World Playground](https://www.mitoaction.org/venue/wills-park-wacky-world-playground/) **Published:** August 4, 2021 **Author:** Jeannie --- ### [North Andover Youth Center](https://www.mitoaction.org/venue/north-andover-youth-center/) **Published:** March 24, 2021 **Author:** Jeannie --- ### [DCR's Mother Rest](https://www.mitoaction.org/venue/dcrs-mother-rest/) **Published:** September 3, 2019 **Author:** Jeannie --- ### [Genesee Valley Park](https://www.mitoaction.org/venue/genesee-valley-park/) **Published:** October 1, 2019 **Author:** Jeannie --- ### [Green Lake Park](https://www.mitoaction.org/venue/green-lake-park/) **Published:** October 1, 2019 **Author:** Jeannie --- ### [Children's Hospital of Pittsburgh](https://www.mitoaction.org/venue/childrens-hospital-of-pittsburgh/) **Published:** October 1, 2019 **Author:** Jeannie --- ### [Hilton Pasadena](https://www.mitoaction.org/venue/hilton-pasadena/) **Published:** October 8, 2019 **Author:** Kira Mann --- ### [Maple Grove Library](https://www.mitoaction.org/venue/maple-grove-library/) **Published:** November 20, 2019 **Author:** Jeannie --- ### [Leawood Pioneer Library](https://www.mitoaction.org/venue/leawood-pioneer-library/) **Published:** January 20, 2020 **Author:** Jeannie --- ### [Uptime Esports](https://www.mitoaction.org/venue/uptime-esports/) **Published:** January 29, 2020 **Author:** Jeannie --- ### [Wyndham Pittsburgh University Center](https://www.mitoaction.org/venue/wyndham-pittsburgh-university-center/) **Published:** January 31, 2020 **Author:** Jeannie --- ### [Catholic University of America - McGivney Hall](https://www.mitoaction.org/venue/catholic-university-of-america-mcgivney-hall/) **Published:** February 20, 2020 **Author:** Jeannie --- ### [Babson College](https://www.mitoaction.org/venue/babson-college/) **Published:** March 3, 2020 **Author:** Jeannie --- ### [Green Lakes State Park](https://www.mitoaction.org/venue/green-lakes-state-park/) **Published:** August 20, 2020 **Author:** Jeannie --- ## Organizers ### [PTC Therapeutics](https://www.mitoaction.org/organizer/ptc-therapeutics/) **Published:** October 25, 2021 **Author:** Jeannie --- ### [Ultragenyx Pharmaceutical](https://www.mitoaction.org/organizer/ultragenyx-pharmaceutical/) **Published:** October 6, 2021 **Author:** Jeannie --- ### [](https://www.mitoaction.org/organizer/4206/) **Published:** November 20, 2019 **Author:** Jeannie --- ### [Paint With Me Boston](https://www.mitoaction.org/organizer/paint-with-me-boston/) **Published:** August 25, 2020 **Author:** Jeannie --- ### [INFORM](https://www.mitoaction.org/organizer/inform/) **Published:** January 27, 2021 **Author:** Jeannie --- ### [UPMC Children's Hospital of Pittsburgh Center for Rare Disease Therapy](https://www.mitoaction.org/organizer/upmc-childrens-hospital-of-pittsburgh-center-for-rare-disease-therapy/) **Published:** February 18, 2021 **Author:** Jeannie --- ## Events ### [Educational Series for Genetic Counselors: How Can a GC Best Support an LHON Patient?](https://www.mitoaction.org/mitoaction-events/educational-series-for-genetic-counselors-how-can-a-gc-best-support-an-lhon-patient/) **Published:** August 20, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 9 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Nov-2-1-819x1024.png)LHON is extremely rare, and presents unique complexities for the Genetic Counselor. This discussion will identify challenges and offer potential solutions from the perspectives of an Ocular Genetic Counselor and an experienced LHON Advocate / LHON Mom. Participants will learn what key support LHON patients and their family members need, and how to connect them with those resources. Register --- ### [Seeing Beyond the Diagnosis: Life with Mito](https://www.mitoaction.org/mitoaction-events/seeing-beyond-the-diagnosis-life-with-mito/) **Published:** August 15, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 14, 2025 @ 6:30 pm – 8:30 pm Join MitoAction for a unique experience that will bring you inside understanding into the patient diagnostic and treatment journey. Mitochondrial disease patients value their GCs, geneticists, neurologists, PCPs and more, and have carved out this time to honor their patient journeys and educate the clinical community about their experiences through a panel discussion led by Genetic Counselor Heather Gaddy (Shipley). As a provider this event will give you inside understanding from the patient perspective, and help you to continue to move forward in your patient care thoughtfully. **FREE for those not seeking CEUs.** [Register](https://events.ringcentral.com/events/2026-mitoaction-educational-series-for-genetic-counselors/registration) **Tags:** Awareness Week, life with mito, patient support **Event Categories:** Awareness Week --- ### [Open Mito Mic & Art Show](https://www.mitoaction.org/mitoaction-events/open-mito-mic-art-show-2/) **Published:** September 11, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 15 @ 6:00 pm – 7:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2026/09/2026-Art-Show-2-1024x1024.png)A call to all visual artists, poets, comedians, singers, quilters…and creators!! We are asking you to take the months of September and October to think about your Mito Journey and create an expression you would like to share at **MitoAction’s Fourth Annual Open Mito Mic and Art Show,** which will be held **November 15 at 6pm (EST).** This year our topic is **“Holding Beauty and Pain.”** There is an art to holding both beauty and pain together, to not allow oneself to be all consumed by one or the other. If we hold only what is beautiful in our lives, then we embrace ignorance. If we hold only pain, the darkness may consume us. So the “game” we must play with ourselves is existing in tension between beauty and pain. It is truly an art to allow these emotions and experiences to co-exist. This year we challenge you to share a piece of art that explores the pain or beauty that exists in your life with Mito, or create a piece that exemplifies this tension. During our art show, together, we will hold the tension of pain and beauty through your submissions, and we will share this with our greater Mito Community. We can bring hope by showing that this is possible! Explore the above topic in the art form that is most meaningful to you! Then take a picture or video of your painting, drawing, knitting, poem, song, comedy bit ect. and send your art and your [Artist Release Form](https://www.mitoaction.org/wp-content/uploads/2026/09/Artist_Creator-Release-Form.pdf) to . **All pieces are due no later than October 30, 2026** (but please feel free to send them sooner!). *\*Submissions will be transformed into a singular video, and our show will occur virtually* ***November 15 at 6pm (EST)****, followed by a short panel discussion with our artists!* [Artist Release Form](https://www.mitoaction.org/wp-content/uploads/2026/09/Artist_Creator-Release-Form.pdf) [Register!](https://mitoaction-org.zoom.us/meeting/register/rxGE5ywER52X4Z_9pl3y1Q) **Tags:** art show, open mic --- ### [MitoArtisan’s Playtime – Course 10](https://www.mitoaction.org/mitoaction-events/mitoartisans-playtime-course-10/) **Published:** September 8, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 13 @ 3:00 pm – 4:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2026/09/MitoArtisans-Course-10-4-1024x1024.png)**Course 10 Description:** Butterflies go through a metamorphosis; this makes me think of our bodies and how Mito changes us. We are forced to adapt in ways that we never anticipated. We strive to create balance in our energy needs; our life takes on a duality in the way we can be many iterations of ourselves depending on how we feel at any given time. Mito forces us to transform who we are in the world and shapes us into something new. Mito brought me back to my roots as an artist, had me begin *Mito Quilts of Hope* to advocate for our community and give comfort to those of us dealing with **Mitochondrial** Disease. I would not have done these things without my diagnosis. What has been your transformation? Think of this as we draw and feel free to share that with us through the session. [Learn More](https://www.mitoaction.org/resources/mitoartisans-playtime-course-10-zebra-butterfly/) [Register](https://mitoaction-org.zoom.us/meeting/register/wjNIEfTlQkepQXUw-EXvDw) --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-36/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 11 @ 1:15 pm – 2:15 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [TK2D Awareness Day](https://www.mitoaction.org/mitoaction-events/tk2d-awareness-day-4/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 8 @ 12:00 am – 11:59 pm EDT **Event Categories:** Awareness, Events --- ### [Light a Light](https://www.mitoaction.org/mitoaction-events/light-a-light-2/) **Published:** August 20, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 16 All day ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Light-A-Light-Wide.png)Each year during the Wednesday of **Mitochondrial** Disease Awareness Week, we celebrate and join together to raise awareness for mitochondrial disease across the globe, we remember those who have lost the battle with mitochondrial disease and ask that friends and family “Light a Light” in their memory. [Learn more](https://www.mitoaction.org/programs-support/patient-and-family-support/memories/) --- ### [LHON Awareness Day 2026](https://www.mitoaction.org/mitoaction-events/lhon-awareness-day-2026/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 19 @ 12:00 am – 11:59 pm EDT **Event Categories:** Awareness, Events --- ### [Expert Series: NARP: Understanding the Spectrum of Disease](https://www.mitoaction.org/mitoaction-events/expert-series-narp-understanding-the-spectrum-of-disease/) **Published:** August 20, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 11 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Sep-11-1024x1024.png)NARP (Neuropathy, Ataxia, and Retinitis Pigmentosa) is a mitochondrial disorder with a broad and variable clinical spectrum that can affect the nervous system, vision, movement, swallowing, cognition, and energy. This talk will explore the history and genetics of NARP, how genetic confirmation informs diagnosis and care, and how symptoms such as ataxia and energy impairment can manifest in ways that are often misunderstood. We will also discuss current approaches to symptom management, multidisciplinary care, and the evolving treatment landscape for individuals living with NARP. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_pdK_3jyJRSKxID5a6ORHGw#/registration) ## About the Speaker: ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Image-8-20-26-at-352-PM-1.jpeg)Lily Walson is a clinical geneticist in the Division of Medical Genetics at Emory University, specializing in the diagnosis, risk assessment, and management of genetic disorders in children and adults, with a focus on adult-onset conditions. She has a particular interest in evaluating multisystem presentations of mitochondrial disorders, including unexplained fatigue, myopathy, hearing loss, and early-onset diabetes. Lily Walson, MD, MS Assistant Professor of Human genetics Emory University School of Medicine **Tags:** expert series, NARP, research **Event Categories:** Events, Monthly Expert Series --- ### [Educational Series for Genetic Counselors: Introduction to the Series: A Tour of the MitochondrionDr. Kuo, MD](https://www.mitoaction.org/mitoaction-events/educational-series-for-genetic-counselors-introduction-to-the-series-a-tour-of-the-mitochondriondr-kuo-md/) **Published:** August 20, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 10 @ 3:00 pm – 4:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Aug-10-819x1024.png)Mitochondrial disease is everywhere in medicine, often hiding in plain sight yet shaping the clinical course of patients we see every day. This presentation aims to build a practical framework for understanding mitochondrial disorders as genetic conditions of energy production and intermediary metabolism. Participants will learn to identify key mitochondrial pathways and core features, examine how the pathophysiology of mitochondrial dysfunction maps onto the physical manifestations genetic counselors actually see, and recognize when mitochondrial conditions should be considered in the differential diagnosis. --- ### [Educational Series for Genetic Counselors: Neurologic Manifestations of Genetic Mitochondrial Disease across the Lifespan](https://www.mitoaction.org/mitoaction-events/educational-series-for-genetic-counselors-neurologic-manifestations-of-genetic-mitochondrial-disease-across-the-lifespan/) **Published:** August 20, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 30 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Nov-30-819x1024.png)We will review neurologic presentations of genetic mitochondrial disorders with attention to the most frequently occurring neurologic symptoms. We review the presentation of these symptoms across the lifespan. We will discuss indications for testing and special considerations in testing methodologies. Register --- ### [Educational Series for Genetic Counselors: The Mito Maze: Smart Testing Strategies for Complex Cases](https://www.mitoaction.org/mitoaction-events/educational-series-for-genetic-counselors-the-mito-maze-smart-testing-strategies-for-complex-cases/) **Published:** August 20, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 2 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Nov-2-819x1024.png)This talk will review clinical indications that warrant mitochondrial disease evaluations and will discuss the strengths and limitations to the multiple different testing options for primary mitochondrial disorders, reviewing when each is appropriate to consider. [Register](https://events.ringcentral.com/events/2026-mitoaction-educational-series-for-genetic-counselors/registration?utm_campaign=buffer&utm_content=buffer4adcd&utm_medium=social&utm_source=facebook.com) --- ### [Educational Series for Genetic Counselors: Current Landscape of Prenatal and Pre-Conception Genetic Testing for Primary Mitochondrial Disease in the United States](https://www.mitoaction.org/mitoaction-events/educational-series-for-genetic-counselors-current-landscape-of-prenatal-and-pre-conception-genetic-testing-for-primary-mitochondrial-disease-in-the-united-states/) **Published:** August 20, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 19 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Oct-19-819x1024.png)This talk will review prenatal testing options available in the United States, limitations to prenatal testing for mitochondrial DNA variants, and considerations for the future of mitochondrial disease prenatal testing. [Register](https://events.ringcentral.com/events/2026-mitoaction-educational-series-for-genetic-counselors/registration?utm_campaign=buffer&utm_content=buffer4adcd&utm_medium=social&utm_source=facebook.com) --- ### [Educational Series for Genetic Counselors: Understanding Clinical Trials from a Clinician's Perspective](https://www.mitoaction.org/mitoaction-events/educational-series-for-genetic-counselors-understanding-clinical-trials-from-a-clinicians-perspective/) **Published:** August 20, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 5 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Oct-5-819x1024.png)Join Dr. Amy Goldstein as she dives deeper into the clinical trial process. She will highlight: obstacles that are unique to mitochondrial disease patients, how to access emergency/compassionate use, which drugs are currently approved and have on-going clinical trials, and how genetic counselors can stay up to speed with what trials are available for patients. [Register](https://events.ringcentral.com/events/2026-mitoaction-educational-series-for-genetic-counselors/registration?utm_campaign=buffer&utm_content=buffer4adcd&utm_medium=social&utm_source=facebook.com) --- ### [Educational Series for Genetic Counselors: Practicing Empathy, Motivational Interviewing and Trauma Informed Care](https://www.mitoaction.org/mitoaction-events/__trashed/) **Published:** August 20, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 1 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Oct-1-819x1024.png)I will be presenting an interactive presentation on motivational interviewing: utilizing collaborative client centered communication to bridge barriers in mitochondrial disease care. [Register](https://events.ringcentral.com/events/2026-mitoaction-educational-series-for-genetic-counselors/registration?utm_campaign=buffer&utm_content=buffer4adcd&utm_medium=social&utm_source=facebook.com) --- ### [Educational Series for Genetic Counselors: Seeing Beyond the Diagnosis: Life with Mito](https://www.mitoaction.org/mitoaction-events/educational-series-for-genetic-counselors-seeing-beyond-the-diagnosis-life-with-mito/) **Published:** August 18, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 14 @ 6:30 pm – 8:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Sep-14-2-819x1024.png)Join MitoAction for a unique experience that will bring you inside understanding into the patient diagnostic and treatment journey. Mitochondrial disease patients value their GCs, geneticists, neurologists, PCPs and more, and have carved out this time to honor their patient journeys and educate the clinical community about their experiences through a panel discussion led by Genetic Counselor Heather Gaddy (Shipley). As a provider this event will give you inside understanding from the patient perspective, and help you to continue to move forward in your patient care thoughtfully. [Register](https://events.ringcentral.com/events/2026-mitoaction-educational-series-for-genetic-counselors/registration) --- ### [Educational Series for Genetic Counselors: What a GC Needs to Know About Direct to Consumer Testing](https://www.mitoaction.org/mitoaction-events/educational-series-for-genetic-counselors-what-a-gc-needs-to-know-about-direct-to-consumer-testing/) **Published:** August 17, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 20 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Aug-20-1-819x1024.png)Join Devin Shuman, MS, LCGC, for the next session in MitoAction’s Genetic Counselor CEU Series, **“What a GC Needs to Know About Direct-to-Consumer Testing”**. This session will explore the growing role of direct-to-consumer genetic testing and provide practical insights to help genetic counselors confidently navigate results, conversations, and considerations in patient care. This session is eligible for 0.1 CEU credit. [Register](https://events.ringcentral.com/events/2026-mitoaction-educational-series-for-genetic-counselors/registration) --- ### [MELAS EL-PFDD Meeting with MitoAction](https://www.mitoaction.org/mitoaction-events/pfdd-meeting/) **Published:** August 18, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 10 @ 10:00 am – 4:30 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2025/12/MELAS-PFDD-registration-is-live.png)MitoAction is honored to host an Externally Led Patient-Focused Drug Development (PFDD) meeting focused on MELAS (Mitochondrial Encephalomyopathy, Lactic Acidosis, and Stroke-like Episodes). This meeting on February 10, 2026 is open to all members of the mitochondrial disease community, including patients, caregivers, clinicians, researchers, and industry partners. [Register](https://events.zoom.us/ev/AiaLOktQyWeE9YBfPgYOcWipWE4ErBm8sHX_nqrgqLk931CasBAq~AouTHJA-tHjoEdumk_d_4AaiLtMD2WXj8ROHy9LsVtHYQE6cojE1W4kb3Q) **Event Categories:** Events --- ### [Light Up for Mito](https://www.mitoaction.org/mitoaction-events/light-up-for-mito-2/) **Published:** August 16, 2026 **Author:** Michael Green **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 19 All day On Saturday 19 September, landmarks, buildings, and monuments around the world will light up green to shine a light on mitochondrial diseases.This powerful global display raises visibility, sparks conversations, and shows solidarity with the mito community. [Order your light ](https://www.mitoaction.org/join-the-cause/raise-your-voice/awareness-week/order-your-green-lights/)and join MitoAction as we show solidarity with the mito community. --- ### [Expert Series: Understanding the FALCON Study: Investigating a Potential Therapy for Mitochondrial Disease](https://www.mitoaction.org/mitoaction-events/expert-series-understanding-the-falcon-study-investigating-a-potential-therapy-for-mitochondrial-disease/) **Published:** August 12, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 14 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Aug-14-1024x1024.png)This presentation will dive deep into the “Falcon Study” to explain what this study is, who qualifies, the mechanism of action of the compound being studied, and how its efficacy is measured. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_a6w4webtS-aAGzQC126z9A) ## About the Speaker ![](https://www.mitoaction.org/wp-content/uploads/2026/08/Image-8-12-26-at-223-PM-1.jpeg)#### Dr. Mary Kay Koenig Dr. Mary Kay Koenig serves as the Director of the Center for the Treatment of Pediatric Neurodegenerative Disease (CTPND), Director of Research for the Division of Child & Adolescent Neurology and Associate Vice-Chair for Clinical Research at the University of Texas McGovern Medical School. Dr. Koenig attended the University of Texas in Austin where she received a Bachelor of Arts in BioChemistry. Following undergraduate school, Dr. Koenig received a Masters of Science in Microbiology at Southwest Texas State University followed by her Medical Doctorate at St. George’s School of Medicine. After medical school, Dr. Koenig completed a pediatrics residency at the University of Texas Medical Branch in Galveston and a fellowship in Child and Adolescent Neurology at The University of Texas Medical School. Upon completion of her fellowship, she joined the faculty and is now a tenured professor. She has served as the director for the UT Mitochondrial Center of Excellence since 2007, the co-Director for the UT Memorial Hermann Tuberous Sclerosis Clinic since 2007, and the Leigh Syndrome clinic director since 2013. Dr. Koenig strives to provide excellent clinic care and advance research for children afflicted with genetic neurodegenerative disease. She also works to mentor and educate junior faculty, fellows, residents, and medical students in the art of medicine and clinical research. **Tags:** expert series, mito support, research, therapy, wellness **Event Categories:** Events, Monthly Expert Series --- ### [Expert Series:  Simplifying the Mitochondrial Medication Experience Through Compounded Mito Cocktails](https://www.mitoaction.org/mitoaction-events/expert-series-simplifying-the-mitochondrial-medication-experience-through-compounded-mito-cocktails/) **Published:** May 13, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 5 @ 12:00 pm – 1:00 pm EDT ![Event poster for Monthly Mito Expert Series with title, date and time, and three speaker headshots (Bryan R. Cohen, Houry Lopedjian, Jonathan Mordis).](https://www.mitoaction.org/wp-content/uploads/2026/05/ES-June-5-Chemistry-RX-1024x1024.png)As the incidence of mitochondrial disease continues to rise, patients having a better understanding surrounding their therapies remains critical. Compounding pharmacies play a key role in simplifying medication regimens while providing affordable options. This presentation will explore the importance of compounding pharmacies while highlighting how ACHC rare disease accredited compounding pharmacies employ clinical teams that support both patients and clinicians during their treatment journey. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_2JPOGS1YTWCqVA_YpCnnYg#/registration) **Tags:** expert series, lactic acid **Event Categories:** Events, Monthly Expert Series --- ### [2026 Energy Walk Rochester, NY](https://www.mitoaction.org/mitoaction-events/2026-energy-walk-rochester-ny/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 27 All day Join us to raise awareness and funds for mito—one step at a time! Your participation makes a huge difference in the lives of patients and families who rely on us. Help to show our community how strong and powerful we can be together! **Basil Marella Park** 975 English Rd Rochester, NY 14626 [Learn More](https://www.mitoaction.org/events/energywalk/energywalkrochester/) [Register](https://p2p.onecause.com/rochesterenergywalk) --- ### [2026 Energy Walk Perris, CA](https://www.mitoaction.org/mitoaction-events/2026-energy-walk-perris-ca/) **Published:** August 11, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 14 All day Join us to raise awareness and funds for mito—one step at a time! Your participation makes a huge difference in the lives of patients and families who rely on us. Help to show our community how strong and powerful we can be together! **Foss Park** 138 N. Perris Boulevard Perris, CA 92570 USA [Learn more](https://www.mitoaction.org/events/energywalk/energy-walk-perris-ca/) [Register](https://p2p.onecause.com/perrisenergywalk) --- ### [2026 Energy Walk Tallahassee, FL](https://www.mitoaction.org/mitoaction-events/2026-energy-walk-tallahassee-fl/) **Published:** August 11, 2026 **Author:** Sydney Watkins **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 19 All day Join us to raise awareness and funds for mito—one step at a time! Your participation makes a huge difference in the lives of patients and families who rely on us. Help to show our community how strong and powerful we can be together! **Alfred B. Mclay Gardens State Park** 3540 Thomasville Rd Tallahassee, FL 32309 [Learn more](https://www.mitoaction.org/events/energywalk/energy-walk-tallahassee-fl/) [Register](https://p2p.onecause.com/tallahasseeenergywalk) --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-32/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 14 @ 1:15 pm – 2:15 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mitochondrial Disease Awareness Week](https://www.mitoaction.org/mitoaction-events/mitochondrial-disease-awareness-week-3/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 14 @ 12:00 am – September 20 @ 11:59 pm EDT **Event Categories:** Awareness Week, Events --- ### [Teen Breakout Session](https://www.mitoaction.org/mitoaction-events/teen-breakout-session/) **Published:** July 23, 2026 **Author:** Michael Green **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 25 @ 12:30 pm – 1:30 pm Join Maddie Youtsey for a special time just for teens! If you are a teen with an FAOD or a teen sibling, come and join this special space! There will be lots of laughter, story telling, and connection! [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Conference Session --- ### [Welcome](https://www.mitoaction.org/mitoaction-events/welcome/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 25 @ 9:30 am – 10:15 am [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Conference Session --- ### [Ultragenyx Study Updates and Initiatives](https://www.mitoaction.org/mitoaction-events/ultragenyx-study-updates-and-initiatives/) **Published:** July 23, 2026 **Author:** Michael Green **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 25 @ 9:45 am – 10:15 am Join the Ultragenyx team for an overview of their latest research, clinical study updates, and ongoing initiatives focused on advancing treatments for individuals living with fatty acid oxidation disorders (FAODs). Learn about current progress, future directions, and the company’s continued commitment to partnering with the FAOD community to accelerate innovation and improve patient outcomes. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Conference Session --- ### [Understanding LC-FAOD Guidelines](https://www.mitoaction.org/mitoaction-events/understanding-faod-guidelines-created-by-inform/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 25 @ 10:15 am – 11:00 am Guidelines for FAODs are essential as clinicians seek to collaborate and find treatment for LC-FAODs. In the last 5 years, an international group of experts in the FAOD field worked together to discuss and create guidelines for LC-FAOD treatment, which will be published in the near future. Some of these clinicians are also involved in INFORM / part of INFORM. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Conference Session --- ### [2026 Energy Walk Boston, MA](https://www.mitoaction.org/mitoaction-events/2026-energy-walk-boston-ma/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 26 All day Join us to raise awareness and funds for mito—one step at a time! Your participation makes a huge difference in the lives of patients and families who rely on us. Help to show our community how strong and powerful we can be together! **UMass Boston** 220 William T Morrissey Blvd Boston, MA 02125 [Learn More](https://www.mitoaction.org/events/energywalk/energywalkboston/) [Register](https://p2p.onecause.com/bostonenergywalk) --- ### [Energy Walk Boston](https://www.mitoaction.org/mitoaction-events/energy-walk-boston-2/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 27, 2025 @ 5:00 pm – 9:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2024/12/Screenshot-2025-03-21-at-1.52.29 PM-1024x680.png)Gather your team and get ready to go for a walk all while raising awareness for mitochondrial disease! Whether you walk as an individual, create a team or volunteer, you’re making a difference in the lives of patients and families who rely on us. Your fundraising helps MitoAction change the future of health for every mito patient, here and around the world. Registration Coming Soon **Event Categories:** Energy Walk, Events --- ### [Welcome](https://www.mitoaction.org/mitoaction-events/welcome-2/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26 @ 1:00 pm – 1:15 pm [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Conference, IMC Conference Session --- ### [Development of a Cell-in-a-Dish Model to Study Peripheral Neuropathy in LCHADD](https://www.mitoaction.org/mitoaction-events/development-of-a-cell-in-a-dish-model-to-study-peripheral-neuropathy-in-lchadd/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26 @ 4:00 pm – 4:45 pm Scientists are aiming to better understand the mechanisms underlying peripheral nervous system dysfunction in LCHADD/MTPD. The limited accessibility of human neural tissues and the lack of disease-specific experimental models, mechanistic studies of peripheral neuropathy (PN) in LCHADD/MTPD remain challenging. In this presentation, Chen Zhang will introduce and explain a cell-in-a-dish platform, combining human stem cell-derived neural cells and primary rat cells to investigate the interactions/effects of circulating metabolites on neural cells and sensory neuron–Schwann cell itnteractions. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Conference, IMC Conference Session --- ### [Beyond Traditional Physical Therapy: Exploring New Paths in Metabolic Care](https://www.mitoaction.org/mitoaction-events/beyond-traditional-physical-therapy-exploring-new-paths-in-metabolic-car/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26 @ 3:00 pm – 4:00 pm This session introduces caregivers and patients to alternative therapy options—including aquatic therapy, hippotherapy, and emerging modalities like red light therapy and compression recovery systems. Presenters will explain how these approaches may support strength, endurance, and overall function, while offering practical guidance on safety, access, and real-world use. Attendees will leave with a clearer understanding of how to thoughtfully incorporate these therapies into everyday care. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Conference, IMC Conference Session --- ### [From Supplements to Weight Loss –  Maximizing Your Nutrition Health](https://www.mitoaction.org/mitoaction-events/from-supplements-to-weight-loss-maximizing-your-nutrition-health/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26 @ 2:00 pm – 3:00 pm This presentation will review the diet records and current supplements from participants in the Natural History of LCHADD Retinopathy study. Then Dr. Gillingham will discuss how to maximize micronutrient intake, what is the right amount of protein, and how to think about body weight and weight loss while also managing an FAOD. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Conference, IMC Conference Session --- ### [Cultivating a New Normal: A Guide for New Families with FAODs](https://www.mitoaction.org/mitoaction-events/cultivating-a-new-normal-a-guide-for-new-families-with-faods/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26 @ 1:15 pm – 2:00 pm When a child is diagnosed with an FAOD the world of a caregiver drastically changes. This presentation will draw on the insight of both a long-standing geneticist in the FAOD community and parent who is 17 years into the journey. Together they will explore topics that families face who are new to the journey. If you have a newborn through high schooler, this session is for you! [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Conference, IMC Conference Session --- ### [Break](https://www.mitoaction.org/mitoaction-events/break-3/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26 @ 4:45 pm – 5:00 pm [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Conference, IMC Conference Session --- ### [Clinician Panel](https://www.mitoaction.org/mitoaction-events/clinician-panel-2/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26 @ 5:00 pm – 6:00 pm Bring your questions to ask during the Q&A session, or feel free to submit them ahead of time to Stephanie Harry at . [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Conference, IMC Conference Session --- ### [Closing](https://www.mitoaction.org/mitoaction-events/closing-2/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26 @ 6:00 pm – 6:30 pm [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Conference, IMC Conference Session --- ### [IMC 2026](https://www.mitoaction.org/mitoaction-events/imc-2025-2/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 25 @ 12:00 am – July 26 @ 11:59 pm EDT The International Metabolic Conference for Families and Individuals Impacted by Fatty Acid Oxidation Disorders, is an event dedicated to advancing knowledge and collaboration of patients, clinicians, and researchers. In partnership with Dr. Jerry Vockley, Dr. Melanie Gillingham, and [INFORM](https://informnetwork.org/inform-families/), MitoAction assembles leading experts to present to patients, families, caregivers, and clinicians about disease management, clinical trials, nutrition, and the social needs related to FAODs. This is a great opportunity for patients, families, and clinicians to meet one another, share lived experiences, and learn; as we gain insight in moving forward as a community. [Learn More About IMC 2026](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** Events, IMC Conference --- ### [IMC 2025](https://www.mitoaction.org/mitoaction-events/imc-2025-4/) **Published:** December 31, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 24 @ 12:00 am – 11:59 pm EDT **Event Categories:** Events, IMC Conference --- ### [Closing](https://www.mitoaction.org/mitoaction-events/closing/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 25 @ 4:00 pm – 4:30 pm [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Conference Session --- ### [Break](https://www.mitoaction.org/mitoaction-events/break-2/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 25 @ 2:55 pm – 3:00 pm [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Conference Session --- ### [Patient/Family Panel](https://www.mitoaction.org/mitoaction-events/patient-family-panel/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 25 @ 3:00 pm – 4:00 pm Patients and Caregivers from the FAOD community will have time to share their wisdom and lessons learned during their journey. They will tackle pre-prepared questions, and field questions during the panel discussion. If you would like to submit a question ahead of time please contact Stephanie Harry at sharry@mitoaction.org. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Conference Session --- ### [Emerging Genetic Therapies for FAODs](https://www.mitoaction.org/mitoaction-events/emerging-genetic-therapies-for-faods/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 25 @ 1:30 pm – 2:55 pm New genetic therapies are under development for many rare diseases, and some have been approved by the FDA. However, none are approved for FAODs. This presentation will share ongoing research in three different laboratories aimed at developing mRNA and gene therapies for these disorders. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Conference Session --- ### [Break](https://www.mitoaction.org/mitoaction-events/break/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 25 @ 1:15 pm – 1:30 pm [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Conference Session --- ### [FAOD Updates](https://www.mitoaction.org/mitoaction-events/faod-updates/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 25 @ 12:30 pm – 1:15 pm Dr. Vockley will share current treatments and potential therapies in the FAOD community, with our yearly, “FAOD Updates!” [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Conference Session --- ### [Lunch Break](https://www.mitoaction.org/mitoaction-events/lunch-break/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 25 @ 12:00 pm – 12:30 pm [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Conference Session --- ### [Pregnancies in Women With Long-Chain Fatty Acid Oxidation Disorders](https://www.mitoaction.org/mitoaction-events/pregnancies-in-women-with-long-chain-fatty-acid-oxidation-disorders/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 25 @ 11:00 am – 12:00 pm As more women with lcFAODs are now of child-bearing age, questions of safety have arisen. Dr. Grunert will discuss an international study, in which scientists and clinicians collected data on 89 pregnancies in 39 women with lcFAODs. Their current data shows that the outcome of pregnancies in lcFAOD patients was generally favorable, despite a significant risk of metabolic decompensation during pregnancy and the postpartum period. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Conference Session --- ### [Roundtable Discussion: Navigating Romantic Relationships with an FAOD](https://www.mitoaction.org/mitoaction-events/roundtable-discussion-navigating-romantic-relationships-with-an-fao/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 23 @ 7:00 pm – 8:00 pm Navigating romantic relationships can be challenging, and having an FAOD adds additional layers to the mix. Come chat with newlyweds Alex and Tanner Hansen to discuss all the stage and components that come with partnering. Including: Important conversation to have while dating, how to plan for marriage with a disability, birth control considerations, and more! Bring your questions and topics you to sort through! [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Pre-Conference Session --- ### [Roundtable Discussion: Navigating School Life](https://www.mitoaction.org/mitoaction-events/roundtable-discussion-navigating-school-life/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 23 @ 12:00 pm – 1:00 pm This roundtable discussion will bring together families and educators to explore how to successfully support students in the school setting. Participants will learn practical strategies for navigating school systems and educating teachers/staff about medical and academic needs to promote safety, inclusion, and student success. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Pre-Conference Session --- ### [Roundtable Discussion: "International Experience"](https://www.mitoaction.org/mitoaction-events/roundtable-discussion-international-experience/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 22 @ 12:00 pm – 1:00 pm Families with FAODs exist all over the world. In this fun space we will explore: How do you manage your/your child’s medical routine/diet in your own country? What are creative ways to organize traveling to other countries? How to the health care systems vary in different spaces? Where do you feel the most safe traveling? And what should you consider traveling with/what is available in different countries? [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Pre-Conference Session --- ### [Roundtable Discussion: All Things MCADD](https://www.mitoaction.org/mitoaction-events/roundtable-discussion-all-things-mcadd/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 21 @ 7:00 pm – 8:00 pm From infancy to the teenage years, this roundtable will be a space for MCADD families to share their experiences and learn from one another. MCADD is the most common FAOD and is largely treated through avoiding fasting. Our kids tend to be outwardly healthy most of the time, but MCADD is always there and has a tendency to sneak up on us in different ways at different stages of life. Let’s connect and discuss all things MCADD! [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Pre-Conference Session --- ### [Presentation: Navigating the Medical System as an FAOD Adult: Exploring the Unknown](https://www.mitoaction.org/mitoaction-events/presentation-navigating-the-medical-system-as-an-faod-adult-exploring-the-unknown/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 21 @ 12:00 pm – 1:00 pm Adulting with an FAOD presents unique challenges and questions. This presentation will discuss the multidisciplinary care team, how to improve coordination of care and how clinicians safely apply “trial and error” for situations where they have no clear data. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Pre-Conference Session --- ### [Roundtable Discussion: Maintaining Mental Health Through Different Waves of Your FAOD](https://www.mitoaction.org/mitoaction-events/roundtable-discussion-maintaining-mental-health-through-different-waves-of-your-faod/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 20 @ 7:00 pm – 8:00 pm If you are an adult patient or a caregiver of an FAOD you know that there are unique challenges when managing a chronic illness. This is a safe space to discuss how to navigate these ups and downs, share meaningful resources, and connect on a deeper level while creating meaningful strategies. This unique space will be co-hosted by Sharickah Rogers an LPC with two boys w/ VLCAD, Tasia Rechisky an adult rare diseas advocate w/ VLCAD and is an advocate for rare disease and Yi Tak (Daisy) Tsang, a clinical assistant professor in Pediatric Psychology at the U of M who has presented/led roundtables at the FAOD conference the last two years!! [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Pre-Conference Session --- ### [You Are Not Alone: Undiagnosed Community Roundtable](https://www.mitoaction.org/mitoaction-events/you-are-not-alone-undiagnosed-community-roundtable/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 19 @ 7:00 pm – 8:00 pm Meet up with members of the Mito/FAOD community who are genetically undiagnosed. Join in to share stories, resources, and support each other on our undiagnosed journeys. [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Pre-Conference Session --- ### [Presentation: “Breaking Down” FAODs: MCADD, LCHADD, CPT2, VLCADD (and more!)](https://www.mitoaction.org/mitoaction-events/breaking-down-faods-mcadd-lchadd-cpt2-vlcadd-and-more/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 19 @ 3:00 pm – 4:00 pm The FAOD community is comprised of numerous types of FAODs. How do they compare, what enzymes are affected, and why does this lead to different treatments? Did you ever wish someone would show you a picture and really “Break things down.” Join this discussion! [Learn More About IMC](https://www.mitoaction.org/events/internationalmetabolicconference/) [Register for the IMC Conference](https://events.ringcentral.com/events/2026-international-metabolic-conference/registration) **Event Categories:** IMC Pre-Conference Session --- ### [CANCELED Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-26/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 3 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [MitoArtisan's Playtime - Course 9](https://www.mitoaction.org/mitoaction-events/mitoartisans-playtime-course-9/) **Published:** May 28, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 14 @ 3:00 pm – 4:30 pm ![Promotional poster for MITO ARTISAN'S PLAYTIME: Course 9—Writing as Healing Workshop with Brad Buchanan, June 14, 2026; on the right, a close-up of a hand writing in a notebook.](https://www.mitoaction.org/wp-content/uploads/2026/05/MitoArtisans-Course-9-1024x1024.png)*Writing as Healing workshops offer a safe, supportive space to express our thoughts and feelings through words, enabling us to process trauma, accept difficult news, and rebuild resilience. We are excited to have author Brad Buchanan back with us! He will share a poem from his recent book, “The Birds of Poverty Ridge” and we will have the opportunity to learn and explore the power of writing to heal together! So grab a cup of tea, pen and paper, and come ready to dig deep and be inspired!* [Register](https://mitoaction-org.zoom.us/meeting/register/Jm_MgtuMRhmHFs8hsTUQkw) [Learn More](https://www.mitoaction.org/resources/mitoartisans-playtime-course-9-writing-as-healing-workshop/) *Our MitoArtisan’s Playtime lasts between 1.5-2 hours, but we recognize that everyone’s energy is different in our Mito Community! Please know that we support our participants pacing themselves, breaking as needed, and enjoying this time in a way that is most meaningful to them! Please join us for as long as you are able! All are welcome!* **Tags:** mitoartisan's playtime **Event Categories:** MitoArtisan's Playtime --- ### [Expert Series: Understanding the potential of a "CPK Meter"](https://www.mitoaction.org/mitoaction-events/expert-series-understanding-the-potential-of-a-cpk-meter/) **Published:** May 26, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 18 @ 12:00 pm – 1:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2026/05/June-18-IVDS-1-1024x1024.png) IVDS is a biotech company developing a CPK meter called, *CPK Now.* This small, handheld device will allow patients to check their creatine kinase (CK) level quickly from a fingerstick sample, so they and their care team can react sooner and monitor their care more effectively. This presentation will discuss the science behind the technology, how this meter could be used, where the research/development currently stands, and what the pipeline could look like. [Register](https://mitoaction-org.zoom.us/meeting/register/r3UXHAR5R5OIuS3RR9SRzA) **Tags:** CPK Meter, expert series **Event Categories:** Events, Monthly Expert Series --- ### [2026 Energy Walk Alvin, TX](https://www.mitoaction.org/mitoaction-events/2026-energy-walk-alvin-tx/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 15 All day Join us to raise awareness and funds for mito—one step at a time! Your participation makes a huge difference in the lives of patients and families who rely on us. Help to show our community how strong and powerful we can be together! **Living Stones Church** Victory Ln #1407 Alvin, TX 77511 [Learn More](https://www.mitoaction.org/events/energywalk/energy-walk-alvin-tx/) [Register](https://p2p.onecause.com/alvintexasenergywalk) --- ### [2026 Energy Walk Syracuse, NY](https://www.mitoaction.org/mitoaction-events/2026-energy-walk-syracuse-ny/) **Published:** May 20, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 27 All day Join us to raise awareness and funds for mito—one step at a time! Your participation makes a huge difference in the lives of patients and families who rely on us. Help to show our community how strong and powerful we can be together! **Green Lakes State Park** 7900 Green Lakes Rd Fayetteville, NY 13066 [Learn More](https://www.mitoaction.org/events/energywalk/energywalksyracuse/) [Register](https://p2p.onecause.com/syracuseenergywalk) --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-22/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 5 @ 1:15 pm – 2:30 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [MitoPlaytime: Smoothie Date!](https://www.mitoaction.org/mitoaction-events/mitoplaytime-smoothie-date-2/) **Published:** May 7, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 16 @ 4:30 pm – 5:30 pm Join MitoChampions Debbie Valdez and Sue Leone as they take a playful look at smoothie making!! Bring your own smoothie to this session and sip while Debbie and Sue explore conversations around: Do you drink your smoothie first thing in the morning? Do you drink it as a meal, or with a meal, or for dessert? Do you add toppings? This light hearted conversation is sure to spark new ideas! [Register](https://mitoaction-org.zoom.us/meeting/register/Tfr4z4WPQPecw8ugEOqL5A) --- ### [Expert Series:  Lactic Acid & Mitochondrial Disease: When there’s too much of a good thing](https://www.mitoaction.org/mitoaction-events/expert-series-lactic-acid-mitochondrial-disease-when-theres-too-much-of-a-good-thing/) **Published:** April 23, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 1 @ 12:00 pm – 1:00 pm EDT ![Poster announcing the Monthly Mito Expert Series on lactic acid & mitochondrial disease, featuring Dr. Rebecca Ganetzky, MD.](https://www.mitoaction.org/wp-content/uploads/2026/04/May-1-Ganetzky-1024x1024.png)Lactic acid is an essential metabolite in our body, helping move energy from tissues that generate it, to the tissues that need it the most. We will talk about what lactic acid is supposed to do and how that gets dysregulated in mitochondrial disease. Objectives include naming causes of high lactate, evaluating lactate metabolically & listing downstream impacts of high lactate. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_Mj5SfMUsTouqAFO17539Gw) **Tags:** expert series, lactic acid **Event Categories:** Events, Monthly Expert Series --- ### [MELAS Support Call](https://www.mitoaction.org/mitoaction-events/melas-support-call-2/) **Published:** April 22, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 14 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2026/02/1.png)MitoAction’s MELAS Support Call is a welcoming space for patients, caregivers, and family members to connect with others on their journey with MELAS. These calls offer an opportunity to share experiences and insights, ask questions, learn from one another, and offer encouragement in a supportive, understanding community. [Register](https://mitoaction-org.zoom.us/meeting/register/3GlLPS3hSYqYQEn5DELtag) **Event Categories:** MELAS Support Call, Patient Support, Support Calls --- ### [MELAS Support Call](https://www.mitoaction.org/mitoaction-events/melas-support-call-3/) **Published:** April 22, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 12 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2026/02/1.png)MitoAction’s MELAS Support Call is a welcoming space for patients, caregivers, and family members to connect with others on their journey with MELAS. These calls offer an opportunity to share experiences and insights, ask questions, learn from one another, and offer encouragement in a supportive, understanding community. [Register](https://mitoaction-org.zoom.us/meeting/register/3GlLPS3hSYqYQEn5DELtag) **Event Categories:** MELAS Support Call, Patient Support, Support Calls --- ### [MELAS Support Call](https://www.mitoaction.org/mitoaction-events/melas-support-call-4/) **Published:** April 22, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 9 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2026/02/1.png)MitoAction’s MELAS Support Call is a welcoming space for patients, caregivers, and family members to connect with others on their journey with MELAS. These calls offer an opportunity to share experiences and insights, ask questions, learn from one another, and offer encouragement in a supportive, understanding community. [Register](https://mitoaction-org.zoom.us/meeting/register/3GlLPS3hSYqYQEn5DELtag) **Event Categories:** MELAS Support Call, Patient Support, Support Calls --- ### [MELAS Support Call](https://www.mitoaction.org/mitoaction-events/melas-support-call-5/) **Published:** April 22, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 14 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2026/02/1.png)MitoAction’s MELAS Support Call is a welcoming space for patients, caregivers, and family members to connect with others on their journey with MELAS. These calls offer an opportunity to share experiences and insights, ask questions, learn from one another, and offer encouragement in a supportive, understanding community. [Register](https://mitoaction-org.zoom.us/meeting/register/3GlLPS3hSYqYQEn5DELtag) **Event Categories:** MELAS Support Call, Patient Support, Support Calls --- ### [MELAS Support Call](https://www.mitoaction.org/mitoaction-events/melas-support-call-6/) **Published:** April 22, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 11 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2026/02/1.png)MitoAction’s MELAS Support Call is a welcoming space for patients, caregivers, and family members to connect with others on their journey with MELAS. These calls offer an opportunity to share experiences and insights, ask questions, learn from one another, and offer encouragement in a supportive, understanding community. [Register](https://mitoaction-org.zoom.us/meeting/register/3GlLPS3hSYqYQEn5DELtag) **Event Categories:** MELAS Support Call, Patient Support, Support Calls --- ### [MELAS Support Call](https://www.mitoaction.org/mitoaction-events/melas-support-call-7/) **Published:** April 22, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 8 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2026/02/1.png)MitoAction’s MELAS Support Call is a welcoming space for patients, caregivers, and family members to connect with others on their journey with MELAS. These calls offer an opportunity to share experiences and insights, ask questions, learn from one another, and offer encouragement in a supportive, understanding community. [Register](https://mitoaction-org.zoom.us/meeting/register/3GlLPS3hSYqYQEn5DELtag) **Event Categories:** MELAS Support Call, Patient Support, Support Calls --- ### [MELAS Support Call](https://www.mitoaction.org/mitoaction-events/melas-support-call-8/) **Published:** April 22, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 13 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2026/02/1.png)MitoAction’s MELAS Support Call is a welcoming space for patients, caregivers, and family members to connect with others on their journey with MELAS. These calls offer an opportunity to share experiences and insights, ask questions, learn from one another, and offer encouragement in a supportive, understanding community. [Register](https://mitoaction-org.zoom.us/meeting/register/3GlLPS3hSYqYQEn5DELtag) **Event Categories:** MELAS Support Call, Patient Support, Support Calls --- ### [MELAS Support Call](https://www.mitoaction.org/mitoaction-events/melas-support-call-9/) **Published:** April 22, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 10 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2026/02/1.png)MitoAction’s MELAS Support Call is a welcoming space for patients, caregivers, and family members to connect with others on their journey with MELAS. These calls offer an opportunity to share experiences and insights, ask questions, learn from one another, and offer encouragement in a supportive, understanding community. [Register](https://mitoaction-org.zoom.us/meeting/register/3GlLPS3hSYqYQEn5DELtag) **Event Categories:** MELAS Support Call, Patient Support, Support Calls --- ### [MELAS Support Call](https://www.mitoaction.org/mitoaction-events/melas-support-call-10/) **Published:** April 22, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 8 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2026/02/1.png)MitoAction’s MELAS Support Call is a welcoming space for patients, caregivers, and family members to connect with others on their journey with MELAS. These calls offer an opportunity to share experiences and insights, ask questions, learn from one another, and offer encouragement in a supportive, understanding community. [Register](https://mitoaction-org.zoom.us/meeting/register/3GlLPS3hSYqYQEn5DELtag) **Event Categories:** MELAS Support Call, Patient Support, Support Calls --- ### [FAOD Exploring The Younger Years](https://www.mitoaction.org/mitoaction-events/faod-exploring-the-younger-years-2/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 26 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/03/3-1024x1024.png)Having a young child with an FAOD brings joys and questions, amidst uncertainties! Join VLCADD mom, Megan Cranshaw, and LCHADD mom, Stephanie Harry, for a lunchtime chat! Together we will discuss our journeys, tips, tricks and questions about parenting an infant/young child with an FAOD! [Register](https://mitoaction-org.zoom.us/meeting/register/ZFIVda-XRAm_tQQWI9vfiA) **Event Categories:** FAOD Monthly Support Call, Patient Support, Support Calls --- ### [FAOD Exploring The Younger Years](https://www.mitoaction.org/mitoaction-events/faod-exploring-the-younger-years-3/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 26 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/03/3-1024x1024.png)Having a young child with an FAOD brings joys and questions, amidst uncertainties! Join VLCADD mom, Megan Cranshaw, and LCHADD mom, Stephanie Harry, for a lunchtime chat! Together we will discuss our journeys, tips, tricks and questions about parenting an infant/young child with an FAOD! [Register](https://mitoaction-org.zoom.us/meeting/register/ZFIVda-XRAm_tQQWI9vfiA) **Event Categories:** FAOD Monthly Support Call, Patient Support, Support Calls --- ### [Expert Series:  Eat Smart, Power Strong: Your Mitochondrial Nutrition Grade](https://www.mitoaction.org/mitoaction-events/expert-series-eat-smart-power-strong-your-mitochondrial-nutrition-grade/) **Published:** April 9, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 17 @ 12:00 pm – 1:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2026/03/April-3-Dabari-1-1-1024x1024.png)If you were to grade your knowledge of nutrition and meal planning and preparation, would you pass? This presentation will explain the basic nutrition needs essential for overall health in individuals with **mitochondrial** disease. Strategies for meal planning and meal preparation- while navigating **fatigue** and muscle strength- will also be shared. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_J1i98eK7QfKusvnxr_AR5Q) **Tags:** expert series, nutrition **Event Categories:** Events, Monthly Expert Series --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-15/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 17 @ 1:15 pm – 2:30 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Expert Series: Direct to Consumer Genetic Testing 101](https://www.mitoaction.org/mitoaction-events/expert-series-direct-to-consumer-genetic-testing-101/) **Published:** March 15, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 16 @ 7:00 pm – 8:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2026/03/April-16-Shuman-1024x1024.png)Join us to hear genetic counselor Devin Shuman, CGC, talk about direct-to-consumer testing (DTC). DTC testing is any genetic test that you can order for yourself without a medical health provider. These are often advertised on social media but can be sold in stores. DTC testing can be complicated and it is hard to figure how these tests differ from the testing your provider may order. Come learn the 101 about this testing before you consider buying one or before you try and figure out your results on your own. [Register](https://mitoaction-org.zoom.us/meeting/register/Fa8mOMLBQ6KZchbx74qfDg) **Tags:** expert series, Genetic Counselor, genetic testing **Event Categories:** Events, Monthly Expert Series --- ### [Expert Series: Understanding the Current Landscape of Insurance Coverage for Rare Diseases](https://www.mitoaction.org/mitoaction-events/expert-series-understanding-the-current-landscape-of-insurance-coverage-for-rare-diseases/) **Published:** March 11, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 20 @ 12:00 pm – 1:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2026/03/March-20-Maynard-2-1024x1024.png)As our community celebrates the approval of two new therapies, understanding how to access coverage successfully has never been more important. In partnership with the Little Hercules Foundation and its founder, Kelly Maynard, this special MitoAction Expert Series will break down today’s evolving insurance landscape, including Medicaid, Medicare, ACA protections, and pharmacy vs. medical coverage, while also taking you behind the scenes to understand how claims are processed, how coding and prior authorizations impact access, and how to read and respond to an Explanation of Benefits. This practical, empowering session will equip patients and caregivers with the knowledge needed to anticipate barriers, avoid common missteps, and confidently advocate for timely access to treatment [Register](https://mitoaction-org.zoom.us/webinar/register/WN_yRj4iD0yT2SBHTbLePPuOg#/registration) **Tags:** expert series, insurance, rare disease **Event Categories:** Events, Monthly Expert Series --- ### [13th Annual Matthew Harty Mito Classic](https://www.mitoaction.org/mitoaction-events/13th-annual-matthew-harty-mito-classic/) **Published:** March 11, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 15 @ 3:00 pm – 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2026/03/2026-Mito-Classic-registration-open.png)Join us at the 2026 Matthew Harty Mito Classic! A street hockey tournament that brings middle and high school kids together to raise awareness for mitochondrial diseases and funds for summer camps and college scholarships. [Learn More](https://www.mitoaction.org/events/matthew-harty-mito-classic/) [Register](https://p2p.onecause.com/mitoclassic) --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-13/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 3 @ 1:15 pm – 2:30 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Expert Series: An overview of gastrointestinal motility and mitochondrial function](https://www.mitoaction.org/mitoaction-events/expert-series-an-overview-of-gastrointestinal-motility-and-mitochondrial-function/) **Published:** March 11, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 3 @ 12:00 pm – 1:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2026/03/April-3-Dabari-1-1024x1024.png)Gastroparesis and motility complications are not uncommon for those with mitochondrial disease. During this presentation, Dr. Darbari will provide a background of our understanding of gastrointestinal motility and explore the complexities that patients face with diagnosis and current treatment strategies for conditions related to mitochondrial function. He will also explain current understanding surrounding neuropathy of the gut, and explore answered and unanswered questions as to why this occurs. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_p12bQ9d0RNOjMh9LghP2hA) **Tags:** expert series, gastrointestinal motility, mitochondrial function **Event Categories:** Events, Monthly Expert Series --- ### [Sandra K. Russell Derby Day Benefit for Mito](https://www.mitoaction.org/mitoaction-events/sandra-k-russell-derby-day-benefit-for-mito-4/) **Published:** March 11, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 2 @ 5:00 pm – 9:00 pm ***Join MitoAction for the hottest Derby Day event in Boston!* *Big hats, bow ties, incredible silent and live auction items, signature mint juleps – we’ll have it all!*** The annual Sandra K. Russell Derby Day Benefit for Mito is held in honor of Sandra Russell, who lost her battle to mitochondrial disease in 2008. Sandra was the wife of MitoAction Board Member, Gordon Russell, and mother of Derby Day Committee Members Jonathan Russell, Buck Russell and his wife Rebecca Russell. **DATE AND TIME** Saturday, May 2, 2026 5:00 pm – 9:00 pm **NEW LOCATION THIS YEAR** The Revere Hotel Boston Common [Learn More](https://www.mitoaction.org/events/derbyday/) [Register](https://onecau.se/skrderbyday) **Event Categories:** Events --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-11/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 20 @ 1:15 pm – 2:30 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Expert Series: Neuropathy and Disorders of Mitochondrial Dysfunction](https://www.mitoaction.org/mitoaction-events/expert-series-neuropathy-and-disorders-of-mitochondrial-dysfunction/) **Published:** February 26, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 6 @ 12:00 pm – 1:00 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2026/02/March-6-Goldstein-1024x1024.png)Dr. Amy Goldstein will join MitoAction to review the neurological system and the differences between types of neuropathies. She will explore what conditions neuropathy is most associated with, how neuropathy is diagnosed, testing options, and caveats behind testing. She will also share current management strategies (including medications, equipment, and trials). [Register](https://mitoaction-org.zoom.us/webinar/register/WN_All3WlymThil9Rrj8url0Q#/registration) **Tags:** Dysfunction, expert series, mitochondrial dysfunction, neuropathy **Event Categories:** Events, Monthly Expert Series --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-9/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 6 @ 1:15 pm – 2:30 pm EST Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-44/) **Published:** February 25, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 19 @ 6:00 pm – 7:00 pm EDT Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Patient Support, Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-43/) **Published:** February 25, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 16 @ 6:00 pm – 7:00 pm EDT Join us for “CPEO and Me” every first and third Thursday of each month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Patient Support, Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-41/) **Published:** February 25, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 18 @ 6:00 pm – 7:00 pm EDT Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Patient Support, Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-42/) **Published:** February 25, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 16 @ 6:00 pm – 7:00 pm EDT Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Patient Support, Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-45/) **Published:** February 25, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 20 @ 6:00 pm – 7:00 pm EDT Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Patient Support, Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-40/) **Published:** February 25, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 21 @ 6:00 pm – 7:00 pm EDT Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Patient Support, Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) **Published:** February 25, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 17 @ 6:00 pm – 7:00 pm EDT Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Patient Support, Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-38/) **Published:** February 25, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 15 @ 6:00 pm – 7:00 pm EDT Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Patient Support, Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-39/) **Published:** February 25, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 19 @ 6:00 pm – 7:00 pm EST Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Patient Support, Support Calls --- ### [World Rare Disease Day](https://www.mitoaction.org/mitoaction-events/world-rare-disease-day/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 28 @ 12:00 am – 11:59 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2025/12/Untitled-design-8-1024x512.png)**“Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers.”** Rare Disease Day is a global movement dedicated to advancing equity for people living with rare diseases, championing fair access to diagnosis, care, treatment, and social opportunities worldwide. Since its launch in 2008, Rare Disease Day has helped unite a powerful international community that spans diseases, borders, and backgrounds. Diverse in experience yet shared in purpose, this community continues to raise awareness, drive change, and amplify the voices of those affected by rare disease. **Click [HERE](https://www.rarediseaseday.org/) to learn more about Rare Disease Day!** **Event Categories:** Awareness, Events --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-36/) **Published:** February 13, 2026 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 19 @ 6:00 pm – 7:00 pm EST Join us for “CPEO and Me” every 1st and 3rd Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Patient Support, Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-24/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 5 @ 6:00 pm – 7:00 pm EST Join us for “CPEO and Me” every 1st and 3rd Thursday of the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Patient Support, Support Calls --- ### [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call-14/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 10 @ 11:00 am – 12:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/12/POLG-Support-Call-Website-graphic-1024x1024.png)Join MitoAction once a month for our virtual POLG Support Call. This special space is for patients and caregivers in the POLG community to come together to share their hearts and stories, and tips and tricks with daily living, so as to encourage and support each other. Together, we move forward stronger. [Register](https://mitoaction-org.zoom.us/meeting/register/jhpy_qIQQ5yyHuq_9Qz19A) [![](https://www.mitoaction.org/wp-content/uploads/2025/10/image-6-1-1024x263.png)](https://polgfoundation.org/)**We are thrilled to be collaborating with The POLG Foundation for this wonderful support call series!** **Event Categories:** Patient Support, POLG Support Call, Support Calls --- ### [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call-13/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 12 @ 11:00 am – 12:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/12/POLG-Support-Call-Website-graphic-1024x1024.png)Join MitoAction once a month for our virtual POLG Support Call. This special space is for patients and caregivers in the POLG community to come together to share their hearts and stories, and tips and tricks with daily living, so as to encourage and support each other. Together, we move forward stronger. [Register](https://mitoaction-org.zoom.us/meeting/register/jhpy_qIQQ5yyHuq_9Qz19A) [![](https://www.mitoaction.org/wp-content/uploads/2025/10/image-6-1-1024x263.png)](https://polgfoundation.org/)**We are thrilled to be collaborating with The POLG Foundation for this wonderful support call series!** **Event Categories:** Patient Support, POLG Support Call, Support Calls --- ### [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call-12/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 8 @ 11:00 am – 12:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/12/POLG-Support-Call-Website-graphic-1024x1024.png)Join MitoAction once a month for our virtual POLG Support Call. This special space is for patients and caregivers in the POLG community to come together to share their hearts and stories, and tips and tricks with daily living, so as to encourage and support each other. Together, we move forward stronger. [Register](https://mitoaction-org.zoom.us/meeting/register/jhpy_qIQQ5yyHuq_9Qz19A) [![](https://www.mitoaction.org/wp-content/uploads/2025/10/image-6-1-1024x263.png)](https://polgfoundation.org/)**We are thrilled to be collaborating with The POLG Foundation for this wonderful support call series!** **Event Categories:** Patient Support, POLG Support Call, Support Calls --- ### [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call-11/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 10 @ 11:00 am – 12:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/12/POLG-Support-Call-Website-graphic-1024x1024.png)Join MitoAction once a month for our virtual POLG Support Call. This special space is for patients and caregivers in the POLG community to come together to share their hearts and stories, and tips and tricks with daily living, so as to encourage and support each other. Together, we move forward stronger. [Register](https://mitoaction-org.zoom.us/meeting/register/jhpy_qIQQ5yyHuq_9Qz19A) [![](https://www.mitoaction.org/wp-content/uploads/2025/10/image-6-1-1024x263.png)](https://polgfoundation.org/)**We are thrilled to be collaborating with The POLG Foundation for this wonderful support call series!** **Event Categories:** Patient Support, POLG Support Call, Support Calls --- ### [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call-10/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 13 @ 11:00 am – 12:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/12/POLG-Support-Call-Website-graphic-1024x1024.png)Join MitoAction once a month for our virtual POLG Support Call. This special space is for patients and caregivers in the POLG community to come together to share their hearts and stories, and tips and tricks with daily living, so as to encourage and support each other. Together, we move forward stronger. [Register](https://mitoaction-org.zoom.us/meeting/register/jhpy_qIQQ5yyHuq_9Qz19A) [![](https://www.mitoaction.org/wp-content/uploads/2025/10/image-6-1-1024x263.png)](https://polgfoundation.org/)**We are thrilled to be collaborating with The POLG Foundation for this wonderful support call series!** **Event Categories:** Patient Support, POLG Support Call, Support Calls --- ### [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call-9/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 9 @ 11:00 am – 12:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/12/POLG-Support-Call-Website-graphic-1024x1024.png)Join MitoAction once a month for our virtual POLG Support Call. This special space is for patients and caregivers in the POLG community to come together to share their hearts and stories, and tips and tricks with daily living, so as to encourage and support each other. Together, we move forward stronger. [Register](https://mitoaction-org.zoom.us/meeting/register/jhpy_qIQQ5yyHuq_9Qz19A) [![](https://www.mitoaction.org/wp-content/uploads/2025/10/image-6-1-1024x263.png)](https://polgfoundation.org/)**We are thrilled to be collaborating with The POLG Foundation for this wonderful support call series!** **Event Categories:** Patient Support, POLG Support Call, Support Calls --- ### [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call-8/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 11 @ 11:00 am – 12:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/12/POLG-Support-Call-Website-graphic-1024x1024.png)Join MitoAction once a month for our virtual POLG Support Call. This special space is for patients and caregivers in the POLG community to come together to share their hearts and stories, and tips and tricks with daily living, so as to encourage and support each other. Together, we move forward stronger. [Register](https://mitoaction-org.zoom.us/meeting/register/jhpy_qIQQ5yyHuq_9Qz19A) [![](https://www.mitoaction.org/wp-content/uploads/2025/10/image-6-1-1024x263.png)](https://polgfoundation.org/)**We are thrilled to be collaborating with The POLG Foundation for this wonderful support call series!** **Event Categories:** Patient Support, POLG Support Call, Support Calls --- ### [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call-7/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 14 @ 11:00 am – 12:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/12/POLG-Support-Call-Website-graphic-1024x1024.png)Join MitoAction once a month for our virtual POLG Support Call. This special space is for patients and caregivers in the POLG community to come together to share their hearts and stories, and tips and tricks with daily living, so as to encourage and support each other. Together, we move forward stronger. [Register](https://mitoaction-org.zoom.us/meeting/register/jhpy_qIQQ5yyHuq_9Qz19A) [![](https://www.mitoaction.org/wp-content/uploads/2025/10/image-6-1-1024x263.png)](https://polgfoundation.org/)**We are thrilled to be collaborating with The POLG Foundation for this wonderful support call series!** **Event Categories:** Patient Support, POLG Support Call, Support Calls --- ### [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call-6/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 9 @ 11:00 am – 12:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/12/POLG-Support-Call-Website-graphic-1024x1024.png)Join MitoAction once a month for our virtual POLG Support Call. This special space is for patients and caregivers in the POLG community to come together to share their hearts and stories, and tips and tricks with daily living, so as to encourage and support each other. Together, we move forward stronger. [Register](https://mitoaction-org.zoom.us/meeting/register/jhpy_qIQQ5yyHuq_9Qz19A) [![](https://www.mitoaction.org/wp-content/uploads/2025/10/image-6-1-1024x263.png)](https://polgfoundation.org/)**We are thrilled to be collaborating with The POLG Foundation for this wonderful support call series!** **Event Categories:** Patient Support, POLG Support Call, Support Calls --- ### [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call-5/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 12 @ 11:00 am – 12:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/12/POLG-Support-Call-Website-graphic-1024x1024.png)Join MitoAction once a month for our virtual POLG Support Call. This special space is for patients and caregivers in the POLG community to come together to share their hearts and stories, and tips and tricks with daily living, so as to encourage and support each other. Together, we move forward stronger. [Register](https://mitoaction-org.zoom.us/meeting/register/jhpy_qIQQ5yyHuq_9Qz19A) [![](https://www.mitoaction.org/wp-content/uploads/2025/10/image-6-1-1024x263.png)](https://polgfoundation.org/)**We are thrilled to be collaborating with The POLG Foundation for this wonderful support call series!** **Event Categories:** Patient Support, POLG Support Call, Support Calls --- ### [MELAS Support Call](https://www.mitoaction.org/mitoaction-events/melas-support-call/) **Published:** February 2, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 10 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2026/02/1.png)MitoAction’s MELAS Support Call is a welcoming space for patients, caregivers, and family members to connect with others on their journey with MELAS. These calls offer an opportunity to share experiences and insights, ask questions, learn from one another, and offer encouragement in a supportive, understanding community. [Register](https://mitoaction-org.zoom.us/meeting/register/3GlLPS3hSYqYQEn5DELtag) **Tags:** melas, support call **Event Categories:** MELAS Support Call, Patient Support, Support Calls --- ### [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call-4/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 12 @ 11:00 am – 12:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/12/POLG-Support-Call-Website-graphic-1024x1024.png)Join MitoAction once a month for our virtual POLG Support Call. This special space is for patients and caregivers in the POLG community to come together to share their hearts and stories, and tips and tricks with daily living, so as to encourage and support each other. Together, we move forward stronger. [Register](https://mitoaction-org.zoom.us/meeting/register/jhpy_qIQQ5yyHuq_9Qz19A) [![](https://www.mitoaction.org/wp-content/uploads/2025/10/image-6-1-1024x263.png)](https://polgfoundation.org/)**We are thrilled to be collaborating with The POLG Foundation for this wonderful support call series!** **Event Categories:** Patient Support, POLG Support Call, Support Calls --- ### [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call-3/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 8 @ 11:00 am – 12:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/12/POLG-Support-Call-Website-graphic-1024x1024.png)Join MitoAction once a month for our virtual POLG Support Call. This special space is for patients and caregivers in the POLG community to come together to share their hearts and stories, and tips and tricks with daily living, so as to encourage and support each other. Together, we move forward stronger. [Register](https://mitoaction-org.zoom.us/meeting/register/jhpy_qIQQ5yyHuq_9Qz19A) [![](https://www.mitoaction.org/wp-content/uploads/2025/10/image-6-1-1024x263.png)](https://polgfoundation.org/)**We are thrilled to be collaborating with The POLG Foundation for this wonderful support call series!** **Event Categories:** Patient Support, POLG Support Call, Support Calls --- ### [Mito Town Meeting 2026](https://www.mitoaction.org/mitoaction-events/mito-town-meeting-2026-2/) **Published:** November 25, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 16 @ 12:00 pm – 2:45 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/11/2026-town-meeting-website-1-1024x1024.png)The annual mito town meeting is our way of kicking off the new year by sharing all that we have in store for the next 12 months! We will hear from organizations and companies around the globe that have special opportunities, programs, and projects for patients and families affected by mitochondrial disease. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_ST5pdStxTG-eSqk-iGt2SA) [2026-Mito-Town-Meeting-Agenda-Instructions.docx-Google-Docs](https://www.mitoaction.org/wp-content/uploads/2026/01/2026-Mito-Town-Meeting-Agenda-Instructions.docx-Google-Docs.pdf) --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-35/) **Published:** January 9, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 15 @ 6:00 pm – 7:00 pm EST Join us for “CPEO and Me” every 1st and 3rd Thursday of the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Patient Support, Support Calls --- ### [MitoArtisan's Playtime - Course 8](https://www.mitoaction.org/mitoaction-events/mitoartisans-playtime-course-8/) **Published:** January 9, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 15 @ 3:00 pm – 4:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2026/01/MitoArtisans-Course-8.png)*Writing as Healing workshops offer a safe, supportive space to express our thoughts and feelings through words, enabling us to process trauma, accept difficult news, and rebuild resilience. Join MitoAction and author Brad Buchanan for our first, “Writing as Healing Workshop.”* Click ‘Learn More’ to view the supply list and traceable pattern (optional)! [Register](https://mitoaction-org.zoom.us/meeting/register/m3KtbY72Ri6yevzyJ427Qg#/) [Learn More](https://www.mitoaction.org/resources/mitoartisans-playtime-course-8-writing-as-healing-workshop/) *Our MitoArtisan’s Playtime lasts between 1.5-2 hours, but we recognize that everyone’s energy is different in our Mito Community! Please know that we support our participants pacing themselves, breaking as needed, and enjoying this time in a way that is most meaningful to them! Please join us for as long as you are able! All are welcome!* **Tags:** mitoartisan's playtime **Event Categories:** MitoArtisan's Playtime --- ### [FAOD Support Call](https://www.mitoaction.org/mitoaction-events/faod-support-call/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 8 @ 8:15 pm – 9:15 pm EST Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Patient Support, Support Calls --- ### [Expert Series: Understanding TK2d and the KYGEVVI Approval](https://www.mitoaction.org/mitoaction-events/expert-series-understanding-tk2d-and-the-kygevvi-approval/) **Published:** January 6, 2026 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 23 @ 12:00 pm – 1:00 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2026/01/Jan-23-Chang-1024x1024.png)Join us for an informative webinar exploring KYGEVVI™ (doxecitine and doxribtimine), the first FDA-approved treatment for thymidine kinase 2 deficiency (TK2d) in adults and pediatric patients with an age of symptom onset on or before 12 years. This session will cover: - The basics of TK2d, including its genetic cause, symptoms, and how it is diagnosed - The impact of TK2d on patients and families - An overview of KYGEVVI, including how it works and who may be eligible for treatment - Important safety information and what to expect with therapy For full prescribing information and important safety details, please visit [https://www.kygevvi.com/](https://eur02.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.kygevvi.com%2F&data=05%7C02%7CSarah.Chang%40ucb.com%7C9d67851ee18d4ccb086008de4ca44849%7C237582ad3eab4d44868806ca9f2e613b%7C0%7C0%7C639032465629876092%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=a990Puj4gs77isy9TgmqEMseZaLUcmZ%2BjQbF6zkUZSg%3D&reserved=0). [Register](https://mitoaction-org.zoom.us/webinar/register/WN_fAFqedI_T0SjxIagFRn0cA) **Tags:** expert series, new treatment, tk2d **Event Categories:** Events, Monthly Expert Series --- ### [Clinical Trials Day](https://www.mitoaction.org/mitoaction-events/clinical-trials-day-3/) **Published:** December 31, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 20 @ 12:00 am – 11:59 pm EDT **Event Categories:** Awareness, Events --- ### [INFORM Conference 2026](https://www.mitoaction.org/mitoaction-events/inform-conference-2026-2/) **Published:** December 31, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 22 @ 12:00 am – 11:59 pm EDT **Event Categories:** Conferences --- ### [Mitochondrial Disease Awareness Week](https://www.mitoaction.org/mitoaction-events/mitochondrial-disease-awareness-week-5/) **Published:** December 31, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 13 @ 12:00 am – September 19 @ 11:59 pm EDT **Event Categories:** Awareness Week, Events --- ### [LHON Awareness Day 2025](https://www.mitoaction.org/mitoaction-events/lhon-awareness-day-2025-3/) **Published:** December 31, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 15 @ 12:00 am – 11:59 pm EDT **Event Categories:** Awareness, Events --- ### [ACMG Toronto](https://www.mitoaction.org/mitoaction-events/acmg-toronto-2/) **Published:** December 31, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 10 @ 12:00 am – 11:59 pm EDT **Event Categories:** Conferences --- ### [International Epilepsy Day](https://www.mitoaction.org/mitoaction-events/international-epilepsy-day/) **Published:** December 31, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 9 @ 12:00 am – 11:59 pm EST **Event Categories:** Awareness, Events --- ### [International Epilepsy Day](https://www.mitoaction.org/mitoaction-events/international-epilepsy-day-3/) **Published:** December 31, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 9 @ 12:00 am – 11:59 pm EST **Event Categories:** Awareness, Events --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-34/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 3 @ 6:00 pm – 7:00 pm EST Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Patient Support, Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-33/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 5 @ 6:00 pm – 7:00 pm EST Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Patient Support, Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-31/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 3 @ 6:00 pm – 7:00 pm EDT Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Patient Support, Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-32/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 1 @ 6:00 pm – 7:00 pm EDT Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Patient Support, Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-29/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 2 @ 6:00 pm – 7:00 pm EDT Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Patient Support, Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-30/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 6 @ 6:00 pm – 7:00 pm EDT Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Patient Support, Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-28/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 4 @ 6:00 pm – 7:00 pm EDT Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Patient Support, Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-26/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 2 @ 6:00 pm – 7:00 pm EDT Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Patient Support, Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-27/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 7 @ 6:00 pm – 7:00 pm EDT Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Patient Support, Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-25/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 5 @ 6:00 pm – 7:00 pm EST Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Patient Support, Support Calls --- ### [FAOD Support Call](https://www.mitoaction.org/mitoaction-events/faod-support-call-12/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 10 @ 8:15 pm – 9:15 pm EST Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Patient Support, Support Calls --- ### [FAOD Support Call](https://www.mitoaction.org/mitoaction-events/faod-support-call-11/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 12 @ 8:15 pm – 9:15 pm EST Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Patient Support, Support Calls --- ### [FAOD Support Call](https://www.mitoaction.org/mitoaction-events/faod-support-call-10/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 8 @ 8:15 pm – 9:15 pm EDT Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Patient Support, Support Calls --- ### [FAOD Support Call](https://www.mitoaction.org/mitoaction-events/faod-support-call-9/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 10 @ 8:15 pm – 9:15 pm EDT Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Patient Support, Support Calls --- ### [FAOD Support Call](https://www.mitoaction.org/mitoaction-events/faod-support-call-7/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 9 @ 8:15 pm – 9:15 pm EDT Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Patient Support, Support Calls --- ### [FAOD Support Call](https://www.mitoaction.org/mitoaction-events/faod-support-call-8/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 13 @ 8:15 pm – 9:15 pm EDT Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Patient Support, Support Calls --- ### [FAOD Support Call](https://www.mitoaction.org/mitoaction-events/faod-support-call-6/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 11 @ 8:15 pm – 9:15 pm EDT Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Patient Support, Support Calls --- ### [FAOD Support Call](https://www.mitoaction.org/mitoaction-events/faod-support-call-4/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 9 @ 8:15 pm – 9:15 pm EDT Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Patient Support, Support Calls --- ### [FAOD Support Call](https://www.mitoaction.org/mitoaction-events/faod-support-call-5/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 14 @ 8:15 pm – 9:15 pm EDT Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Patient Support, Support Calls --- ### [FAOD Support Call](https://www.mitoaction.org/mitoaction-events/faod-support-call-2/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 12 @ 8:15 pm – 9:15 pm EST Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Patient Support, Support Calls --- ### [FAOD Support Call](https://www.mitoaction.org/mitoaction-events/faod-support-call-3/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 12 @ 8:15 pm – 9:15 pm EDT Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Patient Support, Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-42/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 22 @ 6:00 pm – 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)MitoAction recognizes that men impacted by mitochondrial disease face a unique set of circumstances. Whether you navigate living with or caring for a loved one with mito, the support calls for men provide an opportunity to connect with others who can relate best. If you are a patient, parent, caregiver, friend, or loved one, feel free to join us for a monthly support call just for men in the mitochondrial disease community! [Register Now](https://mitoaction-org.zoom.us/meeting/register/tZwkcO-hqzgtEtU8nUq0DF3yU1Kgn1gux6Bw) **Event Categories:** Men’s Support Call, Patient Support, Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-41/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 24 @ 6:00 pm – 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)MitoAction recognizes that men impacted by mitochondrial disease face a unique set of circumstances. Whether you navigate living with or caring for a loved one with mito, the support calls for men provide an opportunity to connect with others who can relate best. If you are a patient, parent, caregiver, friend, or loved one, feel free to join us for a monthly support call just for men in the mitochondrial disease community! [Register Now](https://mitoaction-org.zoom.us/meeting/register/tZwkcO-hqzgtEtU8nUq0DF3yU1Kgn1gux6Bw) **Event Categories:** Men’s Support Call, Patient Support, Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-39/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 22 @ 6:00 pm – 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)MitoAction recognizes that men impacted by mitochondrial disease face a unique set of circumstances. Whether you navigate living with or caring for a loved one with mito, the support calls for men provide an opportunity to connect with others who can relate best. If you are a patient, parent, caregiver, friend, or loved one, feel free to join us for a monthly support call just for men in the mitochondrial disease community! [Register Now](https://mitoaction-org.zoom.us/meeting/register/tZwkcO-hqzgtEtU8nUq0DF3yU1Kgn1gux6Bw) **Event Categories:** Men’s Support Call, Patient Support, Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-40/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 27 @ 6:00 pm – 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)MitoAction recognizes that men impacted by mitochondrial disease face a unique set of circumstances. Whether you navigate living with or caring for a loved one with mito, the support calls for men provide an opportunity to connect with others who can relate best. If you are a patient, parent, caregiver, friend, or loved one, feel free to join us for a monthly support call just for men in the mitochondrial disease community! [Register Now](https://mitoaction-org.zoom.us/meeting/register/tZwkcO-hqzgtEtU8nUq0DF3yU1Kgn1gux6Bw) **Event Categories:** Men’s Support Call, Patient Support, Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-38/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 25 @ 6:00 pm – 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)MitoAction recognizes that men impacted by mitochondrial disease face a unique set of circumstances. Whether you navigate living with or caring for a loved one with mito, the support calls for men provide an opportunity to connect with others who can relate best. If you are a patient, parent, caregiver, friend, or loved one, feel free to join us for a monthly support call just for men in the mitochondrial disease community! [Register Now](https://mitoaction-org.zoom.us/meeting/register/tZwkcO-hqzgtEtU8nUq0DF3yU1Kgn1gux6Bw) **Event Categories:** Men’s Support Call, Patient Support, Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-36/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 23 @ 6:00 pm – 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)MitoAction recognizes that men impacted by mitochondrial disease face a unique set of circumstances. Whether you navigate living with or caring for a loved one with mito, the support calls for men provide an opportunity to connect with others who can relate best. If you are a patient, parent, caregiver, friend, or loved one, feel free to join us for a monthly support call just for men in the mitochondrial disease community! [Register Now](https://mitoaction-org.zoom.us/meeting/register/tZwkcO-hqzgtEtU8nUq0DF3yU1Kgn1gux6Bw) **Event Categories:** Men’s Support Call, Patient Support, Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-37/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 28 @ 6:00 pm – 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)MitoAction recognizes that men impacted by mitochondrial disease face a unique set of circumstances. Whether you navigate living with or caring for a loved one with mito, the support calls for men provide an opportunity to connect with others who can relate best. If you are a patient, parent, caregiver, friend, or loved one, feel free to join us for a monthly support call just for men in the mitochondrial disease community! [Register Now](https://mitoaction-org.zoom.us/meeting/register/tZwkcO-hqzgtEtU8nUq0DF3yU1Kgn1gux6Bw) **Event Categories:** Men’s Support Call, Patient Support, Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-35/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 26 @ 6:00 pm – 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)MitoAction recognizes that men impacted by mitochondrial disease face a unique set of circumstances. Whether you navigate living with or caring for a loved one with mito, the support calls for men provide an opportunity to connect with others who can relate best. If you are a patient, parent, caregiver, friend, or loved one, feel free to join us for a monthly support call just for men in the mitochondrial disease community! [Register Now](https://mitoaction-org.zoom.us/meeting/register/tZwkcO-hqzgtEtU8nUq0DF3yU1Kgn1gux6Bw) **Event Categories:** Men’s Support Call, Patient Support, Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-33/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 24 @ 6:00 pm – 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)MitoAction recognizes that men impacted by mitochondrial disease face a unique set of circumstances. Whether you navigate living with or caring for a loved one with mito, the support calls for men provide an opportunity to connect with others who can relate best. If you are a patient, parent, caregiver, friend, or loved one, feel free to join us for a monthly support call just for men in the mitochondrial disease community! [Register Now](https://mitoaction-org.zoom.us/meeting/register/tZwkcO-hqzgtEtU8nUq0DF3yU1Kgn1gux6Bw) **Event Categories:** Men’s Support Call, Patient Support, Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-34/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 28 @ 6:00 pm – 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)MitoAction recognizes that men impacted by mitochondrial disease face a unique set of circumstances. Whether you navigate living with or caring for a loved one with mito, the support calls for men provide an opportunity to connect with others who can relate best. If you are a patient, parent, caregiver, friend, or loved one, feel free to join us for a monthly support call just for men in the mitochondrial disease community! [Register Now](https://mitoaction-org.zoom.us/meeting/register/tZwkcO-hqzgtEtU8nUq0DF3yU1Kgn1gux6Bw) **Event Categories:** Men’s Support Call, Patient Support, Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-32/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 24 @ 6:00 pm – 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)MitoAction recognizes that men impacted by mitochondrial disease face a unique set of circumstances. Whether you navigate living with or caring for a loved one with mito, the support calls for men provide an opportunity to connect with others who can relate best. If you are a patient, parent, caregiver, friend, or loved one, feel free to join us for a monthly support call just for men in the mitochondrial disease community! [Register Now](https://mitoaction-org.zoom.us/meeting/register/tZwkcO-hqzgtEtU8nUq0DF3yU1Kgn1gux6Bw) **Event Categories:** Men’s Support Call, Patient Support, Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-31/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 27 @ 6:00 pm – 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)MitoAction recognizes that men impacted by mitochondrial disease face a unique set of circumstances. Whether you navigate living with or caring for a loved one with mito, the support calls for men provide an opportunity to connect with others who can relate best. If you are a patient, parent, caregiver, friend, or loved one, feel free to join us for a monthly support call just for men in the mitochondrial disease community! [Register Now](https://mitoaction-org.zoom.us/meeting/register/tZwkcO-hqzgtEtU8nUq0DF3yU1Kgn1gux6Bw) **Event Categories:** Men’s Support Call, Patient Support, Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-50/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 18 @ 12:00 pm – 1:00 pm EST Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-49/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 11 @ 12:00 pm – 1:00 pm EST Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-48/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 4 @ 12:00 pm – 1:00 pm EST Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-47/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 27 @ 12:00 pm – 1:00 pm EST Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-46/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 20 @ 12:00 pm – 1:00 pm EST Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-45/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 13 @ 12:00 pm – 1:00 pm EST Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-44/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 6 @ 12:00 pm – 1:00 pm EST Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-43/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 30 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-42/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 23 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-41/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 16 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-40/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 9 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 25 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 2 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 18 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-35/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 4 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-33/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 21 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-34/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 28 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-30/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 31 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-31/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 7 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-29/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 24 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-28/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 17 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-27/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 10 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-25/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 26 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-24/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 19 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-23/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 12 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-21/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 29 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-20/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 22 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-18/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 8 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-19/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 15 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-17/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 1 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-16/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 24 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-14/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 10 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-12/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 27 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-10/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 13 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-8/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 27 @ 12:00 pm – 1:00 pm EST Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-7/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 20 @ 12:00 pm – 1:00 pm EST Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-5/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 6 @ 12:00 pm – 1:00 pm EST Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-6/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 13 @ 12:00 pm – 1:00 pm EST Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-4/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 30 @ 12:00 pm – 1:00 pm EST Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-3/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 23 @ 1:15 pm – 2:30 pm EST Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-2/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 9 @ 12:00 pm – 1:00 pm EST Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Patient Support, Support Calls, Weekly Support Calls --- ### [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-23/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 18 @ 7:00 pm – 8:00 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Event Categories:** MitoChampion --- ### [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-24/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 16 @ 7:00 pm – 8:00 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Event Categories:** MitoChampion --- ### [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-22/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 21 @ 7:00 pm – 8:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Event Categories:** MitoChampion --- ### [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-20/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 19 @ 7:00 pm – 8:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Event Categories:** MitoChampion --- ### [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-21/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 16 @ 7:00 pm – 8:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Event Categories:** MitoChampion --- ### [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-18/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 17 @ 7:00 pm – 8:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Event Categories:** MitoChampion --- ### [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-19/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 15 @ 7:00 pm – 8:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Event Categories:** MitoChampion --- ### [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-16/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 15 @ 7:00 pm – 8:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Event Categories:** MitoChampion --- ### [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-17/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 20 @ 7:00 pm – 8:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Event Categories:** MitoChampion --- ### [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-15/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 18 @ 7:00 pm – 8:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Event Categories:** MitoChampion --- ### [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-13/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 21 @ 7:00 pm – 8:00 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Event Categories:** MitoChampion --- ### [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-14/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 18 @ 7:00 pm – 8:00 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Event Categories:** MitoChampion --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-36/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 15 @ 8:30 pm – 9:30 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-34/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 20 @ 8:30 pm – 9:30 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-35/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 17 @ 8:30 pm – 9:30 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-32/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 18 @ 8:30 pm – 9:30 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 15 @ 8:30 pm – 9:30 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-29/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 19 @ 8:30 pm – 9:30 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-27/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 17 @ 8:30 pm – 9:30 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-28/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 21 @ 8:30 pm – 9:30 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-25/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 20 @ 8:30 pm – 9:30 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-26/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 17 @ 8:30 pm – 9:30 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-19/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 26 @ 8:00 pm – 9:00 pm EDT Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-17/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 24 @ 8:00 pm – 9:00 pm EDT Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-18/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 22 @ 8:00 pm – 9:00 pm EDT Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-15/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 22 @ 8:00 pm – 9:00 pm EDT Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-16/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 27 @ 8:00 pm – 9:00 pm EDT Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-13/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 25 @ 8:00 pm – 9:00 pm EST Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-12/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 28 @ 8:00 pm – 9:00 pm EST Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Barth Syndrome Awareness Day](https://www.mitoaction.org/mitoaction-events/barth-syndrome-awareness-day-2/) **Published:** December 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 5 @ 12:00 am – 11:59 pm EDT **Event Categories:** Awareness, Events --- ### [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call-2/) **Published:** December 9, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 11, 2025 @ 11:00 am – 12:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/12/POLG-Support-Call-Website-graphic-1024x1024.png)Join MitoAction once a month for our virtual POLG Support Call. This special space is for patients and caregivers in the POLG community to come together to share their hearts and stories, and tips and tricks with daily living, so as to encourage and support each other. Together, we move forward stronger. [Register](https://mitoaction-org.zoom.us/meeting/register/jhpy_qIQQ5yyHuq_9Qz19A) [![](https://www.mitoaction.org/wp-content/uploads/2025/10/image-6-1-1024x263.png)](https://polgfoundation.org/)**We are thrilled to be collaborating with The POLG Foundation for this wonderful support call series!** --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-114/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 12, 2025 @ 1:15 pm – 2:30 pm EST Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Expert Series: Primary Mitochondrial Disease Evaluations: The evolving role of muscle biopsy](https://www.mitoaction.org/mitoaction-events/expert-series-primary-mitochondrial-disease-evaluations-the-evolving-role-of-muscle-biopsy/) **Published:** November 25, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 12, 2025 @ 12:00 pm – 1:00 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2025/11/Dec-12-Peterson-1024x1024.png)Genetic testing and muscle biopsies are important tools in diagnosing mitochondrial disease, but sometimes it can be confusing how and when they are used. This presentation will seek to bring clarity around how these two different testing options are used, why clinics may choose to use one testing option over another, what information they can/cannot tell us, and how clinics use these options to determine a diagnosis of mitochondrial disease. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_4cMq1S5qQu-eGWVfYi5cYA#/registration) **Tags:** expert series, muscle biopsy, primary mitochondrial **Event Categories:** Events, Monthly Expert Series --- ### [2025 Energy Walk - Riverside](https://www.mitoaction.org/mitoaction-events/2025-energy-walk-riverside/) **Published:** October 31, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 8, 2025 @ 12:00 pm – 4:00 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2025/10/Riverside-EW-Registration-3.png)[Register](https://give.mitoaction.org/event/2025-riverside-mitoaction-energy-walk/e694614) [Learn More](https://www.mitoaction.org/events/energywalk/energy-walk-riverside-ca/) **Event Categories:** Energy Walk, Events --- ### [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-11/) **Published:** October 31, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 26, 2025 @ 8:00 pm Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call/) **Published:** October 30, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 13, 2025 @ 11:00 am – 12:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/10/POLG-Support-Call-1.png)Join MitoAction once a month for our virtual POLG Support Call. This special space is for patients and caregivers in the POLG community to come together to share their hearts and stories, and tips and tricks with daily living, so as to encourage and support each other. Together, we move forward stronger. [Register](https://mitoaction-org.zoom.us/meeting/register/jhpy_qIQQ5yyHuq_9Qz19A) [![](https://www.mitoaction.org/wp-content/uploads/2025/10/image-6-1-1024x263.png)](https://polgfoundation.org/)**We are thrilled to be collaborating with The POLG Foundation for this wonderful support call series!** --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-110/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 7, 2025 @ 12:00 pm – 1:00 pm EST Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Expert Series: Two Generations of Mitochondrial Augmentation Technology: Clinical Advances in Treating Primary Mitochondrial Disease](https://www.mitoaction.org/mitoaction-events/expert-series-two-generations-of-mitochondrial-augmentation-technology-clinical-advances-in-treating-primary-mitochondrial-disease/) **Published:** October 15, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 6, 2025 @ 12:00 pm – 1:00 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2025/10/ES-Nov-7-Jacoby-and-Sher-1-1024x1024.png)Mitochondrial Augmentation Technology (MAT) involves internalizing healthy, functional mitochondria into patient-derived cells to address mitochondrial dysfunction. Minovia has developed two generations of MAT products, studied in patients with primary mitochondrial disease in collaboration with Sheba Medical Center. In this presentation, Dr. Elad Jacoby, the treating physician, and Dr. Noa Sher, Minovia’s CSO, will discuss the promises, challenges, and clinical outcomes of this innovative therapy, providing a comprehensive review of the data to date. This session offers valuable insights for patients, families, and clinicians interested in cutting-edge mitochondrial disease therapies. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_v97SiwpsTeSusv6aLwx3ug#/registration) **Tags:** augmentation technology, expert series, primary mitochondrial **Event Categories:** Events, Monthly Expert Series --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-21-copy-copy/) **Published:** October 15, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 11, 2025 @ 8:15 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-21-copy/) **Published:** October 15, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 13, 2025 @ 8:15 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-30-copy/) **Published:** October 15, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 28, 2025 @ 6:00 pm – 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)MitoAction recognizes that men impacted by mitochondrial disease face a unique set of circumstances. Whether you navigate living with or caring for a loved one with mito, the support calls for men provide an opportunity to connect with others who can relate best. If you are a patient, parent, caregiver, friend, or loved one, feel free to join us for a monthly support call just for men in the mitochondrial disease community! [Register Now](https://mitoaction-org.zoom.us/meeting/register/tZwkcO-hqzgtEtU8nUq0DF3yU1Kgn1gux6Bw) **Tags:** mens support, mito support, patient support, rare disease support **Event Categories:** Men’s Support Call, Patient Support, Support Calls --- ### [FAOD Support: Exploring the Younger Years](https://www.mitoaction.org/mitoaction-events/faod-support-exploring-the-younger-years-5-copy-2/) **Published:** October 15, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 23, 2025 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/03/3-1024x1024.png)Having a young child with an FAOD brings joys and questions, amidst uncertainties! Join VLCADD mom, Megan Cranshaw, and LCHADD mom, Stephanie Harry, for a lunchtime chat! Together we will discuss our journeys, tips, tricks and questions about parenting an infant/young child with an FAOD! [Register](https://mitoaction-org.zoom.us/meeting/register/ZFIVda-XRAm_tQQWI9vfiA) **Tags:** FAOD support --- ### [MitoArtisan's Playtime - Course 7](https://www.mitoaction.org/mitoaction-events/mitoartisans-playtime-course-7/) **Published:** October 13, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 26, 2025 @ 3:00 pm – 4:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/10/MitoArtisans-Course-7-1024x1024.png)*Fall brings a special kind of beauty that we all seek to enjoy in a variety of ways! The crisp air draws us outside to feel the wind on our face, and the leaves tout their glory with reds, yellows, and oranges! This course will seek to capture that beauty in a simple way, using a few colored pencils.* Click ‘Learn More’ to view the supply list and traceable pattern (optional)! [Register](https://mitoaction-org.zoom.us/meeting/register/bOM6vfF-Swy3TFmVpUw5dg) [Learn More](https://www.mitoaction.org/resources/mitoartisans-playtime-course-7-fall-leaves-falling/) *Our MitoArtisan’s Playtime lasts between 1.5-2 hours, but we recognize that everyone’s energy is different in our Mito Community! Please know that we support our participants pacing themselves, breaking as needed, and enjoying this time in a way that is most meaningful to them! Please join us for as long as you are able! All are welcome!* **Tags:** mitoartisan's playtime **Event Categories:** MitoArtisan's Playtime --- ### [MitoPlaytime: Smoothie Date!](https://www.mitoaction.org/mitoaction-events/mitoplaytime-smoothie-date/) **Published:** September 26, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 4, 2025 @ 5:00 pm – 6:00 pm Join MitoChampions Debbie Valdez and Sue Leone as they take a playful look at smoothie making!! Bring your own smoothie to this session and sip while Debbie and Sue explore conversations around: Do you drink your smoothie first thing in the morning? Do you drink it as a meal, or with a meal, or for dessert? Do you add toppings? This light hearted conversation is sure to spark new ideas! [Register](https://mitoaction-org.zoom.us/meeting/register/z8kTI79bTEGEBe5O5bQfSg) --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-21/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 2, 2025 @ 6:00 pm Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Support Calls --- ### [FAOD Support: Exploring the Younger Years](https://www.mitoaction.org/mitoaction-events/faod-support-exploring-the-younger-years-5/) **Published:** September 19, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 25, 2025 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/03/3-1024x1024.png)Having a young child with an FAOD brings joys and questions, amidst uncertainties! Join VLCADD mom, Megan Cranshaw, and LCHADD mom, Stephanie Harry, for a lunchtime chat! Together we will discuss our journeys, tips, tricks and questions about parenting an infant/young child with an FAOD! [Register](https://mitoaction-org.zoom.us/meeting/register/ZFIVda-XRAm_tQQWI9vfiA) **Tags:** FAOD support --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-30/) **Published:** September 19, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 23, 2025 @ 6:00 pm – 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)MitoAction recognizes that men impacted by mitochondrial disease face a unique set of circumstances. Whether you navigate living with or caring for a loved one with mito, the support calls for men provide an opportunity to connect with others who can relate best. If you are a patient, parent, caregiver, friend, or loved one, feel free to join us for a monthly support call just for men in the mitochondrial disease community! [Register Now](https://mitoaction-org.zoom.us/meeting/register/tZwkcO-hqzgtEtU8nUq0DF3yU1Kgn1gux6Bw) **Tags:** mens support, mito support, patient support, rare disease support **Event Categories:** Men’s Support Call, Patient Support, Support Calls --- ### [Mitochondrial Disease Awareness Week](https://www.mitoaction.org/mitoaction-events/mitochondrial-disease-awareness-week-2/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 14, 2025 – September 20, 2025 EDT **Event Categories:** Awareness Week --- ### [MitoPlaytime: Pictionary!](https://www.mitoaction.org/mitoaction-events/mitoplaytime-pictionary/) **Published:** September 12, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 19, 2025 @ 7:00 pm – 8:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/09/MitoAction-pictionary-1024x1024.png)Whether you are young or old, an amazing artist or stick figures are your thing, you won’t want to miss an evening of laughter as MitoChampions April Arguin and Rachel Wilson lead us in a game of Pictionary!! [Register](https://mitoaction-org.zoom.us/meeting/register/deemOiNNRumZMjfTcqSTJw) --- ### [Light Up For Mito](https://www.mitoaction.org/mitoaction-events/light-up-for-mito/) **Published:** September 10, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 20, 2025 All day ![](https://www.mitoaction.org/wp-content/uploads/2025/09/MitoAction-2025-Light-Up-for-Mito-Posts-1024x1024.png)On Saturday, September 20th, landmarks, buildings, homes, and monuments around the world lit up green to shine a light on mitochondrial diseases. This powerful global display raises visibility, sparks conversations, and shows solidarity with the mito community. You can make a difference from your doorstep. Change your home light to green or use your smart lighting to create a glow that gets people talking. Invite neighbours to join and explain why your home has gone green for mito. Small actions lead to big awareness. Click [HERE](https://mitopatients.org/light-up-for-mito/) to learn more! **Event Categories:** Awareness Week --- ### [LHON Awareness Day & Webinar](https://www.mitoaction.org/mitoaction-events/lhon-awareness-day-2025/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 19, 2025 All day ![](https://www.mitoaction.org/wp-content/uploads/2024/12/LHON-webinar-register-1-1024x1024.png)**Join IMP for a webinar at 9am EST to explore the power of nutrition in mitochondrial diseases.** This year as part of LHON we will be hosting a webinar discussing the role of nutrition in living with mito-related conditions. The webinar will feature three key speakers: Dr Isabel Lopez Sanchez, Marzia Camera, and Professor Filipe Chicani. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_1k3XO1vIQw6tuSsJUV9Xow#/registration) **Event Categories:** Awareness --- ### [Light a Light](https://www.mitoaction.org/mitoaction-events/light-a-light/) **Published:** September 9, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 17, 2025 All day ![](https://www.mitoaction.org/wp-content/uploads/2023/09/Light-A-Light-Wide.png)Each year during the Wednesday of **Mitochondrial** Disease Awareness Week, we celebrate and join together to raise awareness for mitochondrial disease across the globe, we remember those who have lost the battle with mitochondrial disease and ask that friends and family “Light a Light” in their memory. Please send your photos and memory wishes to us at Click [HERE](https://www.mitoaction.org/join-the-cause/raise-your-voice/awareness-week/light-a-light/) to learn more and read the stories of some of our community members who have lost their battle with mito. We light a light to honor your legacy. --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-105/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 3, 2025 @ 1:15 pm – 2:30 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Expert Series: Managing challenges and maximizing success in chronic mechanical ventilation](https://www.mitoaction.org/mitoaction-events/expert-series-managing-challenges-and-maximizing-success-in-chronic-mechanical-ventilation/) **Published:** September 9, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 3, 2025 @ 12:00 pm – 1:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2025/09/Oct-3-Oscar-Mayer.png)Mechanical ventilation can be a critical component of a comprehensive and successful plan to support a patient’s respiratory needs in helping them maximize their quality of life and reach their full potential. Doing so successfully starts with and continues to center around a discussion with a patient and his/her family about what their wishes are for the type of respiratory support and then customizing the approach accordingly. This discussion will review different approaches towards successful respiratory support for patients with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_gwDobTizSsusJWMVx9igAw) **Tags:** expert series, mechanical ventilation, respiratory support **Event Categories:** Events, Monthly Expert Series --- ### [TK2D Awareness Day](https://www.mitoaction.org/mitoaction-events/tk2d-awareness-day-3/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 9, 2025 All day ![](https://www.mitoaction.org/wp-content/uploads/2024/12/1080x1080-Uniting-the-Community-Frame-1-1-1024x1024.png)The purpose of this day is to raise awareness of this rare but debilitating disease. The day forms part of the calendar of events included in World Mitochondrial Disease Week, and falls on the second Tuesday of September every year. Join us on September 9th to spread awareness for our TK2d community! **Click [HERE](https://give.mitoaction.org/event/2025-syracuse-energy-walk-and-5k/e688252) to learn more!** **Event Categories:** Awareness --- ### [2025 Energy Walk & 5k - Syracuse](https://www.mitoaction.org/mitoaction-events/2025-energy-walk-5k-syracuse/) **Published:** September 8, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 21, 2025 @ 9:00 am – 1:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2025/09/Syracuse-EW-Registration.png)[Register](https://give.mitoaction.org/event/2025-syracuse-energy-walk-and-5k/e688252) [Learn More](https://www.mitoaction.org/events/energywalk/energywalksyracuse/) **Event Categories:** Energy Walk, Events --- ### [MitoArtisan's Playtime - Course 6](https://www.mitoaction.org/mitoaction-events/mitoartisans-playtime-course-6/) **Published:** September 5, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 14, 2025 @ 3:00 pm – 4:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/08/MitoArtisans-Course-6-1-1024x1024.png)*“The idea for the MitoHeart Project began one evening on a MitoChampion zoom call. During the call, I was knitting and listening to others as they discussed a recent tragedy in our Mito community. I felt so powerless to help, but as I listened, the idea of making hearts for individuals who are struggling or challenged by their health, or the loss of a loved one burned within me.” -Karen Richtman* We would like to encourage you to consider sharing love with those in our Mito Community by making a heart! The heart isn’t difficult to knit. If you are a beginner knitter who knows how to knit and purl, and ideally knows how to follow a pattern, we could use your help with making hearts! There is an ongoing need for more hearts in the Mito community. Whether you are curious about how these beautiful hearts are made, or hope to make some yourself, **we encourage you to join us on September 14th at 3pm (ET) for our next MitoArtisian Playtime.** We will lead you through the steps of making a heart, and a video of the class will be recorded for you to use in the future! If you like to knit and have never heard of **mitochondrial** disease, what an amazing opportunity to learn more about this community as we launch into Mitochondrial Disease Awareness Week September 15-21st! Click ‘Learn More’ to view the supply list and knitting pattern! [Register](https://mitoaction-org.zoom.us/meeting/register/LukD6tD_QRyo1vcQ-mw3_g#/registration) [Learn More](https://www.mitoaction.org/resources/mitoartisans-playtime-course-6-mitohearts-project/) *Our MitoArtisan’s Playtime lasts between 1.5-2 hours, but we recognize that everyone’s energy is different in our Mito Community! Please know that we support our participants pacing themselves, breaking as needed, and enjoying this time in a way that is most meaningful to them! Please join us for as long as you are able! All are welcome!* **Tags:** mitoartisan's playtime **Event Categories:** MitoArtisan's Playtime --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-101/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 5, 2025 @ 1:15 pm – 2:30 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [FAOD Support: Exploring the Younger Years](https://www.mitoaction.org/mitoaction-events/faod-support-exploring-the-younger-years-4/) **Published:** August 12, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 28, 2025 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/03/3-1024x1024.png)Having a young child with an FAOD brings joys and questions, amidst uncertainties! Join VLCADD mom, Megan Cranshaw, and LCHADD mom, Stephanie Harry, for a lunchtime chat! Together we will discuss our journeys, tips, tricks and questions about parenting an infant/young child with an FAOD! [Register](https://mitoaction-org.zoom.us/meeting/register/ZFIVda-XRAm_tQQWI9vfiA) **Tags:** FAOD support --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-29/) **Published:** August 12, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 26, 2025 @ 6:00 pm – 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)MitoAction recognizes that men impacted by mitochondrial disease face a unique set of circumstances. Whether you navigate living with or caring for a loved one with mito, the support calls for men provide an opportunity to connect with others who can relate best. If you are a patient, parent, caregiver, friend, or loved one, feel free to join us for a monthly support call just for men in the mitochondrial disease community! [Register Now](https://mitoaction-org.zoom.us/meeting/register/tZwkcO-hqzgtEtU8nUq0DF3yU1Kgn1gux6Bw) **Tags:** mens support, mito support, patient support, rare disease support **Event Categories:** Men’s Support Call, Patient Support, Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-117/) **Published:** August 12, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 29, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-28/) **Published:** July 17, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 22, 2025 @ 6:00 pm – 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)MitoAction recognizes that men impacted by mitochondrial disease face a unique set of circumstances. Whether you navigate living with or caring for a loved one with mito, the support calls for men provide an opportunity to connect with others who can relate best. If you are a patient, parent, caregiver, friend, or loved one, feel free to join us for a monthly support call just for men in the mitochondrial disease community! [Register Now](https://mitoaction-org.zoom.us/meeting/register/tZwkcO-hqzgtEtU8nUq0DF3yU1Kgn1gux6Bw) **Tags:** mens support, mito support, patient support, rare disease support **Event Categories:** Men’s Support Call, Patient Support, Support Calls --- ### [Roundtable Discussion: How do you deal with the mental/emotional fatigue of having a chronic health condition?](https://www.mitoaction.org/mitoaction-events/how-do-you-deal-with-the-mental-emotional-fatigue-of-having-a-chronic-health-condition/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26, 2025 @ 4:15 pm – 5:15 pm **Event Categories:** IMC Conference Session --- ### [Growing Up: Meeting New Challenges in Reproductive Health from Puberty and Beyond](https://www.mitoaction.org/mitoaction-events/puberty-the-highs-and-lows/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 27, 2025 @ 11:00 am – 11:45 am --- ### [Kicking It Together: Explore Kickboxing and Stretching with Pam](https://www.mitoaction.org/mitoaction-events/yoga/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26, 2025 @ 4:15 pm – 5:15 pm **Event Categories:** IMC Conference Session --- ### [Closed for the 4th of July!](https://www.mitoaction.org/mitoaction-events/closed-for-the-4th-of-july/) **Published:** June 24, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 4, 2025 – July 7, 2025 ![](https://www.mitoaction.org/wp-content/uploads/2025/06/Happy-Independence-Day.png)MitoAction will be closed for the Fourth of July holiday weekend from Friday, July 4th through Monday, July 7th! We will reopen with normal hours on Tuesday, July 8th. We hope everyone has a safe and fun holiday weekend! --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-18/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 3, 2025 @ 6:00 pm Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-27/) **Published:** April 18, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 24, 2025 @ 6:00 pm – 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)MitoAction recognizes that men impacted by mitochondrial disease face a unique set of circumstances. Whether you navigate living with or caring for a loved one with mito, the support calls for men provide an opportunity to connect with others who can relate best. If you are a patient, parent, caregiver, friend, or loved one, feel free to join us for a monthly support call just for men in the mitochondrial disease community! [Register Now](https://mitoaction-org.zoom.us/meeting/register/tZwkcO-hqzgtEtU8nUq0DF3yU1Kgn1gux6Bw) **Tags:** mens support, mito support, patient support, rare disease support **Event Categories:** Men’s Support Call, Patient Support, Support Calls --- ### [MitoArtisan's Playtime - Course 5](https://www.mitoaction.org/mitoaction-events/mitoartisans-playtime-course-5/) **Published:** June 17, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 13, 2025 @ 3:00 pm – 4:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/06/MitoArtisans-Course-5.png)Vision loss does not have to bar you from enjoying or creating visual art. With a few modifications, mito artisans with low vision can still express themselves creatively. Join this presentation for an overview of tips and tricks for making the creative process more accessible. Learn about organization systems, positioning, sensory feedback and more. This session will also feature time for audience questions. [Register](https://mitoaction-org.zoom.us/meeting/register/Xeak6K7rTb66fzWIllt4Kw) *Our MitoArtisan’s Playtime lasts between 1.5-2 hours, but we recognize that everyone’s energy is different in our Mito Community! Please know that we support our participants pacing themselves, breaking as needed, and enjoying this time in a way that is most meaningful to them! Please join us for as long as you are able! All are welcome!* **Tags:** mitoartisan's playtime **Event Categories:** MitoArtisan's Playtime --- ### [CANCELED: Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-19/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 15, 2025 @ 8:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)**The July Our Space Session has been canceled. Please join our next session on August 19th!** Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-90/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 6, 2025 @ 1:15 pm – 2:30 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Expert Series: Understanding Rare Genetic Variants: What Do My Results Really Mean?](https://www.mitoaction.org/mitoaction-events/expert-series-understanding-rare-genetic-variants-what-do-my-results-really-mean/) **Published:** May 29, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 6, 2025 @ 12:00 pm – 1:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2025/05/June-6-Russo-1024x1024.png)When a genetic variant is shared by only a handful of individuals worldwide, what does it mean for diagnosis, treatment, and research? In this session, we’ll explore the complexities of interpreting ultra-rare genetic **mutations**, especially in the context of **mitochondrial** disease. How do clinicians and geneticists determine whether a novel or rare variant is **pathogenic**? What frameworks are used to classify **variants**, and how do phenotypic data contribute to this process? Can a “variant of uncertain significance” (VUS) eventually be reclassified as clinically meaningful? Join Dr. Rossan Sanchez, Assistant Professor and Pediatric & Metabolic Geneticist at Emory Genetics, for an in-depth discussion on the scientific, clinical, and emotional challenges faced by individuals in the mitochondrial disease community who truly are “the rare among the rare.” [Register](https://mitoaction-org.zoom.us/webinar/register/WN_W-dZUuY_R1KXAPBSYnCOFg#/registration) **Tags:** expert series, rare genetic variants **Event Categories:** Events, Monthly Expert Series --- ### [Fueling for the Marathon of Chronic Illness: What's Your Self-Care Strategy?](https://www.mitoaction.org/mitoaction-events/fueling-for-the-marathon-of-chronic-illness-whats-your-self-care-strategy/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26, 2025 @ 4:00 pm – 4:15 pm **Event Categories:** IMC Conference Session --- ### [Aging with an Fatty Acid Oxidation Disorder](https://www.mitoaction.org/mitoaction-events/aging-with-an-faod/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26, 2025 @ 2:25 pm – 3:10 pm **Event Categories:** IMC Conference Session --- ### [Clinician Panel](https://www.mitoaction.org/mitoaction-events/clinician-panel/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26, 2025 @ 5:15 pm – 6:15 pm **Event Categories:** IMC Conference Session --- ### [FAOD Guidelines](https://www.mitoaction.org/mitoaction-events/faod-guidelines/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26, 2025 @ 1:30 pm – 2:15 pm **Event Categories:** IMC Conference Session --- ### [Expert Series: The Road Ahead: Navigating the FDA Update on Elamipretide for Barth syndrome](https://www.mitoaction.org/mitoaction-events/expert-series-the-road-ahead-navigating-the-fda-update-on-elamipretide-for-barth-syndrome/) **Published:** June 2, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 4, 2025 @ 12:00 pm – 1:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2025/06/ES-June-4-Stealth-and-Barth-1024x1024.png)Join MitoAction CEO, Kira Mann, Barth Syndrome Foundation CEO, Emily Milligan, and Stealth BioTherapeutics CEO, Reenie McCarthy for a discussion as we navigate the FDA’s most recent update on the application for elamipretide, a crucial treatment for the Barth syndrome community. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_MxSSeey1TgqdXGf-KpMDyA) **Tags:** barth syndrome, elamipretide, expert series, fda **Event Categories:** Events, Monthly Expert Series --- ### [Approaching Sports and Exercise](https://www.mitoaction.org/mitoaction-events/approaching-sports-and-exercise/) **Published:** May 22, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 27, 2025 @ 11:45 am – 12:30 pm **Event Categories:** IMC Conference Session --- ### [Puberty: The Highs and Lows](https://www.mitoaction.org/mitoaction-events/puberty-the-highs-and-lows-2/) **Published:** May 22, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 27, 2025 @ 11:00 am – 11:45 am **Event Categories:** IMC Conference Session --- ### [FAOD Case Studies: Patient and Clinician Collaborative Problem Solving](https://www.mitoaction.org/mitoaction-events/faod-case-studies-patient-and-clinician-collaborative-problem-solving/) **Published:** May 22, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26, 2025 @ 11:35 am – 12:15 pm **Event Categories:** IMC Conference, IMC Conference Session --- ### [FAOD Support: Exploring the Younger Years](https://www.mitoaction.org/mitoaction-events/faod-support-exploring-the-younger-years-3/) **Published:** May 16, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 22, 2025 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/03/3-1024x1024.png)Having a young child with an FAOD brings joys and questions, amidst uncertainties! Join VLCADD mom, Megan Cranshaw, and LCHADD mom, Stephanie Harry, for a lunchtime chat! Together we will discuss our journeys, tips, tricks and questions about parenting an infant/young child with an FAOD! [Register](https://mitoaction-org.zoom.us/meeting/register/ZFIVda-XRAm_tQQWI9vfiA) **Tags:** FAOD support --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-18/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 12, 2025 @ 8:15 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-86/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 9, 2025 @ 1:15 pm – 2:30 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Expert Series: How to Keep Airways Clear and Breathing Great - Bulbar Function and Respiratory Muscles](https://www.mitoaction.org/mitoaction-events/expert-series-how-to-keep-airways-clear-and-breathing-great-bulbar-function-and-respiratory-muscles/) **Published:** May 6, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 9, 2025 @ 12:00 pm – 1:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2025/04/May-9-Oscar-Mayer-1024x1024.png)Patients with progressive or static neuromuscular disease, and certainly mitochondrial disease, can cause significant difficulty with airway clearance. This can be a problem on an everyday basis when a patient is well, but will become a much larger problem when a patient is acutely ill. We will discuss the link between bulbar/upper airway function, respiratory muscle weakness and airway clearance and how to optimize airway clearance and lung health. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_ategsL4-Sy6mp-Ux7mbn7Q#/registration) **Tags:** airways, breathing, expert series **Event Categories:** Events, Monthly Expert Series --- ### [Expert Series: Updates on Cardiomyopathy: Diagnosis and Management in FAOD](https://www.mitoaction.org/mitoaction-events/expert-series-updates-on-cardiomyopathy-diagnosis-and-management-in-faod/) **Published:** April 25, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 30, 2025 @ 7:00 pm – 8:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2025/04/April-30-Chatfield-1-1024x1024.png)Dr. Chatfield will discuss cardiomyopathy and LC-FAODs, share current research, the direction of which it is heading, and treatment strategies. She will also explore prolonged-QT and electrical issues, how this interacts with metabolic crisis, and ways for doctors to monitor the heart. [Register](https://mitoaction-org.zoom.us/meeting/register/cOxwZcAuQHykohKU9lYvDw#/registration) **Tags:** Cardiomyopathy, expert series, faod **Event Categories:** Events, Monthly Expert Series --- ### [Expert Series: Serial Casting and Toe Walking](https://www.mitoaction.org/mitoaction-events/expert-series-serial-casting-and-toe-walking/) **Published:** April 25, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 15, 2025 @ 7:00 pm – 8:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2025/04/May-15-Pamela-Tucker-1024x1024.png)Do you or your child struggle with toe walking? Are you curious about why it occurs and where the concerns lie? Is toe walking reversible and what strategies do physical therapists to help with reduce it? Join Pamela Tucker as she explores these questions while also introducing us to a relatively new strategy called, “Serial Casting.” Together we will learn more about this technique, when it may be useful to explore and how it is done. [Register](https://mitoaction-org.zoom.us/meeting/register/P6nMNtwmSCW9H94b4rUhQQ) **Tags:** expert series, physical therapy **Event Categories:** Events, Monthly Expert Series --- ### [Celebrate Mother's Day](https://www.mitoaction.org/mitoaction-events/celebrate-mothers-day/) **Published:** April 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 11, 2025 All day This Mother’s and Father’s Day, we’re honoring the incredible parents in our mitochondrial disease community—the fierce advocates, tireless caregivers, and everyday heroes who show up with love and strength, no matter the challenges. At MitoAction, we know how much these parents mean to their families and our entire community. That’s why, when you make a donation in honor of a special parent in your life—whether it’s your own parent, a family friend, or a mito parent in need of a little extra love—we’ll send them a small, heartfelt gift to brighten their day. Donate and nominate someone today to let them know just how much they’re appreciated! [Donate to MitoAction in Honor of a Mother in Your Life](https://give.mitoaction.org/campaign/660030/donate) ### Let a special mom or dad in your life know you’re thinking of them this Mother’s or Father’s Day! It’s simple! Make a donation (minimum $25) and we will send someone you love a little gift. ![](https://www.mitoaction.org/wp-content/uploads/2025/04/Mothers-Day-and-Fathers-Day-—-Thinking-of-You-—-MitoAction.png) --- ### [Celebrate Father's Day](https://www.mitoaction.org/mitoaction-events/celebrate-fathers-day/) **Published:** April 23, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 15, 2025 All day This Mother’s and Father’s Day, we’re honoring the incredible parents in our mitochondrial disease community—the fierce advocates, tireless caregivers, and everyday heroes who show up with love and strength, no matter the challenges. At MitoAction, we know how much these parents mean to their families and our entire community. That’s why, when you make a donation in honor of a special parent in your life—whether it’s your own parent, a family friend, or a mito parent in need of a little extra love—we’ll send them a small, heartfelt gift to brighten their day. Donate and nominate someone today to let them know just how much they’re appreciated! [Donate to MitoAction in Honor of a Mother in Your Life](https://give.mitoaction.org/campaign/660030/donate) ### Let a special mom or dad in your life know you’re thinking of them this Mother’s or Father’s Day! It’s simple! Make a donation (minimum $25) and we will send someone you love a little gift. ![](https://www.mitoaction.org/wp-content/uploads/2025/04/Mothers-Day-and-Fathers-Day-—-Thinking-of-You-—-MitoAction.png) --- ### [FAOD Support: Exploring the Younger Years](https://www.mitoaction.org/mitoaction-events/faod-support-exploring-the-younger-years-2/) **Published:** April 22, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 24, 2025 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/03/3-1024x1024.png)Having a young child with an FAOD brings joys and questions, amidst uncertainties! Join VLCADD mom, Megan Cranshaw, and LCHADD mom, Stephanie Harry, for a lunchtime chat! Together we will discuss our journeys, tips, tricks and questions about parenting an infant/young child with an FAOD! [Register](https://mitoaction-org.zoom.us/meeting/register/ZFIVda-XRAm_tQQWI9vfiA) **Tags:** FAOD support --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-116/) **Published:** April 11, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 18, 2025 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Natural History Study Update](https://www.mitoaction.org/mitoaction-events/natural-history-study-update/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26, 2025 @ 10:45 am – 11:30 am **Event Categories:** IMC Conference Session --- ### [Afternoon Registration Begins](https://www.mitoaction.org/mitoaction-events/afternoon-registration-begins/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 25, 2025 @ 12:30 pm – 1:30 pm **Event Categories:** IMC Conference Session --- ### [Welcome to IMC 2025](https://www.mitoaction.org/mitoaction-events/welcome-to-imc-2025/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 25, 2025 @ 2:00 pm – 2:15 pm **Event Categories:** IMC Conference Session --- ### [Understanding All FAODs](https://www.mitoaction.org/mitoaction-events/understanding-all-faods/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 25, 2025 @ 2:15 pm – 3:00 pm **Event Categories:** IMC Conference Session --- ### [Breaking the Ice: FAOD Style](https://www.mitoaction.org/mitoaction-events/breaking-the-ice-faod-style/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 25, 2025 @ 3:00 pm – 4:00 pm **Event Categories:** IMC Conference Session --- ### [FAOD Therapy Updates](https://www.mitoaction.org/mitoaction-events/faod-therapy-updates/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 25, 2025 @ 4:15 pm – 5:15 pm **Event Categories:** IMC Conference Session --- ### [Understanding the Clinical Trial Process](https://www.mitoaction.org/mitoaction-events/understanding-the-clinical-trial-process/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 25, 2025 @ 5:20 pm – 6:05 pm **Event Categories:** IMC Conference Session --- ### [Sponsor Update](https://www.mitoaction.org/mitoaction-events/sponsor-update/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 25, 2025 @ 6:05 pm – 6:30 pm --- ### [FAOD Fun Night: Dinner, Kickball and Snowcones!](https://www.mitoaction.org/mitoaction-events/faod-fun-night-dinner-kickball-and-snowcones/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 25, 2025 @ 6:30 pm – 8:00 pm **Event Categories:** IMC Conference Session --- ### [Doors Open / Continental Breakfast Available at Country Day School](https://www.mitoaction.org/mitoaction-events/doors-open-continental-breakfast-available-at-country-day-school-2/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26, 2025 @ 8:00 am – 9:25 am **Event Categories:** IMC Conference Session --- ### [Morning Report](https://www.mitoaction.org/mitoaction-events/morning-report-2/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26, 2025 @ 9:25 am – 9:30 am **Event Categories:** IMC Conference Session --- ### [FAOD Cooking Tips and Tricks](https://www.mitoaction.org/mitoaction-events/faod-cooking-tips-and-tricks/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26, 2025 @ 9:30 am – 10:30 am **Event Categories:** IMC Conference Session --- ### [Story Moments: Hearing From You! A Non-Traditional Family/Patient Panel](https://www.mitoaction.org/mitoaction-events/story-moments-hearing-from-you-a-non-traditional-family-patient-panel/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26, 2025 @ 3:15 pm – 4:00 pm **Event Categories:** IMC Conference Session --- ### [Lunch](https://www.mitoaction.org/mitoaction-events/lunch-2/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26, 2025 @ 12:15 pm – 1:30 pm **Event Categories:** IMC Conference Session --- ### [Roundtable Discussion: Puberty and Reproductive Health for Parents and Adults of FAODs](https://www.mitoaction.org/mitoaction-events/roundtable-discussion-puberty-and-reproductive-health-for-parents-and-adults-of-faods/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26, 2025 @ 4:15 pm – 5:15 pm **Event Categories:** IMC Conference Session --- ### [Creative Expressions: Practicing Self-Care through Visual Art](https://www.mitoaction.org/mitoaction-events/creative-expressions-practicing-self-care-through-visual-art/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26, 2025 @ 4:15 pm – 5:15 pm **Event Categories:** IMC Conference Session --- ### [Quiet Time: Bring a book, journal and earbud and enter into the quiet room](https://www.mitoaction.org/mitoaction-events/quiet-time-bring-a-book-journal-and-earbud-and-enter-into-the-quiet-room/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26, 2025 @ 4:15 pm – 5:15 pm **Event Categories:** IMC Conference Session --- ### [Guy Talk: Men's Support Time](https://www.mitoaction.org/mitoaction-events/guy-talk-mens-support-time/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26, 2025 @ 4:15 pm – 5:15 pm **Event Categories:** IMC Conference Session --- ### [Meet in the Hotel Lobby for Late Nite Chit Chat](https://www.mitoaction.org/mitoaction-events/meet-in-the-hotel-lobby-for-late-nite-chit-chat/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26, 2025 @ 8:30 pm – 9:00 pm **Event Categories:** IMC Conference Session --- ### [Doors Open / Continental Breakfast Available at Country Day School](https://www.mitoaction.org/mitoaction-events/doors-open-continental-breakfast-available-at-country-day-school/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 27, 2025 @ 8:00 am – 8:55 am **Event Categories:** IMC Conference Session --- ### [Morning Report](https://www.mitoaction.org/mitoaction-events/morning-report/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 27, 2025 @ 8:55 am – 9:00 am **Event Categories:** IMC Conference Session --- ### [Understanding Inflammation](https://www.mitoaction.org/mitoaction-events/understanding-inflammation/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 27, 2025 @ 9:00 am – 9:45 am **Event Categories:** IMC Conference Session --- ### [Power in Stretching](https://www.mitoaction.org/mitoaction-events/power-in-stretching/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 27, 2025 @ 9:45 am – 10:05 am **Event Categories:** IMC Conference Session --- ### [Stretching For Everyone: Gym](https://www.mitoaction.org/mitoaction-events/stretching-for-everyone-gym/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 27, 2025 @ 10:05 am – 10:45 am **Event Categories:** IMC Conference Session --- ### [Raising Your Voice / Closing](https://www.mitoaction.org/mitoaction-events/raising-your-voice-closing/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 27, 2025 @ 12:30 pm – 12:45 pm **Event Categories:** IMC Conference Session --- ### [Lunch](https://www.mitoaction.org/mitoaction-events/lunch/) **Published:** March 13, 2025 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 27, 2025 @ 12:45 pm – 2:00 pm **Event Categories:** IMC Conference Session --- ### [MitoSocial Hosted by MitoAction & MitoCanada](https://www.mitoaction.org/mitoaction-events/mitosocial-hostest-by-mitoaction-mitocanada/) **Published:** April 2, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 27, 2025 @ 4:30 pm – 6:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/04/MitoSocial-Flyer-1.pdf-791x1024.png)Join us for a MitoSocial Event in New York on April 27th! MitoAction and MitoCanada will be hosting this event for families to connect, share stories and experiences, and support one another on everyone’s unique journeys with mito. Join us at the Sondra & Davis S. Mack Student Center at Hofstra University for this wonderful event! Click the link below to learn more about the Mitochondrial Transplantation and Next Generation Therapies Conference. This MitoSocial event will be hosted on the first night of the conference in New York! [Mitochondrial Transplantation Conference](https://physicians.northwell.edu/academic-departments/emergency-medicine/mitochondial-transplant-conference/submit-an-abstract) --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-82/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 4, 2025 @ 1:15 pm – 2:30 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-3/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 26, 2025 @ 8:00 pm **Today’s event has been postponed. Join us for next month’s Wondering Wednesdays on April 23rd!** Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. Register **Event Categories:** Wondering Wednesdays --- ### [IMC 2025](https://www.mitoaction.org/mitoaction-events/imc-2025/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 25, 2025 – July 27, 2025 EDT Welcome to the International Metabolic Conference for families and individuals impacted by Fatty Acid Oxidation Disorders, a premier event dedicated to advancing the knowledge and collaboration for patients, clinicians, and researchers. In partnership with Dr. Jerry Vockley and [INFORM](https://informnetwork.org/inform-families/), MitoAction will assemble leading experts to present to patients, families, caregivers, and clinicians. The focus of the conference is for attendees to learn more about disease management, current clinical trials, nutrition, and the social needs of caring for those with a rare metabolic disorder. This is a great opportunity for patients, families, and clinicians to meet one another in person, spend time networking, and have the opportunity to interact with professionals who specialize in metabolic disorders. We will hear from a variety of speakers including medical professionals, dietitians, social workers, advocates and genetic counselors. We encourage patients, families, and practicing/clinicians in training to come and enjoy a space where we can learn from each other! Everyone in your entire family will have a meaningful way to connect, engage and learn! *\*Please note that there will be activities for children and teens offered in conjunction with scheduled conference sessions.* ### 2025 Conference Info **Dates** July 25-27, 2025 **Location** Detroit Country Day School 22305 W. 13 Mile Road Beverly Hills, MI 48025 [Agenda](https://www.mitoaction.org/events/internationalmetabolicconference/imc-agenda/) [Speakers](https://www.mitoaction.org/events/internationalmetabolicconference/speakers/) [Travel](https://www.mitoaction.org/events/internationalmetabolicconference/travel/) **Event Categories:** IMC Conference --- ### [FAOD Support: Exploring the Younger Years](https://www.mitoaction.org/mitoaction-events/faod-support-exploring-the-younger-years/) **Published:** March 7, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 19, 2025 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/03/3-1024x1024.png)Having a young child with an FAOD brings joys and questions, amidst uncertainties! Join VLCADD mom, Megan Cranshaw, and LCHADD mom, Stephanie Harry, for a lunchtime chat! Together we will discuss our journeys, tips, tricks and questions about parenting an infant/young child with an FAOD! [Register](https://mitoaction-org.zoom.us/meeting/register/ZFIVda-XRAm_tQQWI9vfiA) **Tags:** FAOD support --- ### [Expert Series: Introducing and Implementing Principles in Aquatic Therapy](https://www.mitoaction.org/mitoaction-events/expert-series-introducing-and-implementing-principles-in-aquatic-therapy/) **Published:** March 7, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 4, 2025 @ 12:00 pm – 1:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2025/03/April-4-Pamela-Tucker-1024x1024.png)Aquatic physical therapy provides a supportive environment to address a wide range of functional goals such as muscle strengthening, enhancing postural control, increasing core stability, reducing muscle stiffness, and facilitating mobility. This discussion will review the principles of exercise in an aquatic environment and explore how aquatic therapy can positively impact your health with a mitochondrial condition. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_0dAWkvW_RvOa0pSlr9EIMg#/registration) **Tags:** expert series, physical therapy **Event Categories:** Events, Monthly Expert Series --- ### [Expert Series: All About Ketones](https://www.mitoaction.org/mitoaction-events/expert-series-all-about-ketones/) **Published:** March 7, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 20, 2025 @ 7:00 pm – 8:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2025/03/ES-March-20-Gillingham-1024x1024.png)There has been interest in using **Ketones** as a treatment for FAOD. What exactly are ketones? This presentation will go over what ketones are, how ketones are made in the body and how ketone supplements might be a little different. We will also discuss the current evidence that ketones might be a potential treatment option and what are the key unresolved questions about ketones that are limiting the field moving forward. [Register](https://mitoaction-org.zoom.us/meeting/register/qXYbvsW5RZ-TOjv1eOJ-rw#/registration) **Tags:** expert series, ketones **Event Categories:** Events, Monthly Expert Series --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-26/) **Published:** March 5, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 25, 2025 @ 6:00 pm – 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)MitoAction recognizes that men impacted by mitochondrial disease face a unique set of circumstances. Whether you navigate living with or caring for a loved one with mito, the support calls for men provide an opportunity to connect with others who can relate best. If you are a patient, parent, caregiver, friend, or loved one, feel free to join us for a monthly support call just for men in the mitochondrial disease community! [Register Now](https://mitoaction-org.zoom.us/meeting/register/tZwkcO-hqzgtEtU8nUq0DF3yU1Kgn1gux6Bw) **Tags:** mens support, mito support, patient support, rare disease support **Event Categories:** Men’s Support Call, Patient Support, Support Calls --- ### [Making Our Way Through the Shifting Sands of Change](https://www.mitoaction.org/mitoaction-events/making-our-way-through-the-shifting-sands-of-change-2/) **Published:** March 3, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 4, 2025 @ 6:00 pm – 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/03/Shifting-Sands-of-Change-Support-Call-2-1024x1024.png)Managing change is something that our rare disease community is quite familiar with, as we are often forced to grapple with the “unknowns” that present themselves every day. Change, whether good or bad, can feel jarring, unstabilizing and challenge us in our ability to respond. Whether you are navigating a new symptom, new diagnosis, new policies, or the impact of a rare disease on your family life, we encourage you to sit with others in this safe space to discuss the murky waters of change. Join Becky Sansbury, Retired Chaplain/Author of “After the Shock” and Stephanie Harry, Patient Support Coordinator, for this UNRECORDED space. [Register](https://mitoaction-org.zoom.us/meeting/register/tNRhy6SXTreAijA0c_77Zg) --- ### [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-2/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 26, 2025 @ 8:00 pm **\*Tonight’s session has postponed. Stay tuned for further updates!** Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Sandra K Russell Derby Day Benefit for Mito](https://www.mitoaction.org/mitoaction-events/sandra-k-russell-derby-day-benefit-for-mito-3/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 3, 2025 @ 5:00 pm – 9:00 pm EDT Mark your calendars and plan to join MitoAction for the hottest Derby Day event in Boston! Big hats, bow ties, incredible silent and live auction items, signature mint juleps, and the most exciting two minutes in sports! Click the links below to learn more and register! [Register](https://give.mitoaction.org/event/2025-derby-day/e651176) [Learn More](https://www.mitoaction.org/events/derbyday/) ![](https://www.mitoaction.org/wp-content/uploads/2024/12/Screenshot-2025-02-03-at-1.11.46 PM-1024x652.png)![](https://www.mitoaction.org/wp-content/uploads/2024/12/Screenshot-2025-02-03-at-1.10.53 PM-1024x648.png)![](https://www.mitoaction.org/wp-content/uploads/2024/12/Screenshot-2025-02-03-at-12.40.28 PM-1024x670.png)![](https://www.mitoaction.org/wp-content/uploads/2024/12/Screenshot-2025-02-03-at-1.09.35 PM-1024x636.png) **Event Categories:** Events --- ### [Expert Series: Ins and Outs of the Mito Cocktail: Part 2 of 2](https://www.mitoaction.org/mitoaction-events/expert-series-ins-and-outs-of-the-mito-cocktail-part-2-of-2/) **Published:** February 7, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 7, 2025 @ 12:00 pm – 1:00 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2025/02/ES-Dec-6-Toufas-1-1024x1024.png)In the, “Ins and Outs of the Mito Cocktail: Part 2 of 2,” Dr. Toufas will expound on his December expert series where he explored how our bodies digest and absorb nutrients from food. He will dive deep into how different components of the mito cocktail work after they are absorbed in our body! If you have not watched his December Expert Series, take a moment to prepare for this webinar by watching it here! [Register](https://mitoaction-org.zoom.us/webinar/register/WN_AxFIAI3BQsip3pph5O8E8A#/registration) **Tags:** expert series, mito cocktail **Event Categories:** Events, Monthly Expert Series --- ### [MitoArtisan's Playtime - Course 4](https://www.mitoaction.org/mitoaction-events/mitoartisans-playtime-course-4/) **Published:** February 6, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 23, 2025 @ 3:00 pm – 4:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/02/MitoArtisans-Course-4-1024x1024.png)Creating and connecting with other artists creates healing. Whether you are young or old, a seasoned artist or just curious, we encourage you to join us on February 23rd as we explore art together. Christine Knox, a seasoned illustrator, quilter, artist and MitoChampion, will teach us how to use various drawing materials and share techniques to enhance our drawing skills. This class is a safe place for **all** of our mito patients and families to explore! [Register](https://mitoaction-org.zoom.us/meeting/register/oZnBSnXhQ8GrYz5flPfMJQ) **Download the Course 4 Supply List, Description, and Outline to prepare for this event!** [Title\_ Description (1)](https://www.mitoaction.org/wp-content/uploads/2025/02/Title_-Description-1.pdf)[Download](https://www.mitoaction.org/wp-content/uploads/2025/02/Title_-Description-1.pdf) *Our MitoArtisan’s Playtime lasts between 1.5-2 hours, but we recognize that everyone’s energy is different in our Mito Community! Please know that we support our participants pacing themselves, breaking as needed, and enjoying this time in a way that is most meaningful to them! Please join us for as long as you are able! All are welcome!* **Tags:** mitoartisan's playtime **Event Categories:** MitoArtisan's Playtime --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-78/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 7, 2025 @ 1:15 pm – 2:30 pm EST Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Expert Series: Understanding the Pediatrician's Role in the "Growing Up Years"](https://www.mitoaction.org/mitoaction-events/expert-series-understanding-the-pediatricians-role-in-the-growing-up-years/) **Published:** February 7, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 20, 2025 @ 7:00 pm – 8:00 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2025/02/ES-Feb-20-Nale-1024x1024.png) When you have a child with a rare disease, who sees so many different doctors, it can feel challenging to know how your pediatrician fits into the picture! How do you use this very special doctor to help you navigate your questions, collaborate with other doctors, and move through the everyday life of navigating a rare disease. Join Dr. Daniel Nale as he provides practical tips and advice for patients and clinicians, after walking with an FAOD family from infancy through adulthood. [Register](https://mitoaction-org.zoom.us/meeting/register/MkPwXeoEQOq3wLUkX2ppnw) **Tags:** clinical trials, expert series **Event Categories:** Events, Monthly Expert Series --- ### [Making Our Way Through the Shifting Sands of Change](https://www.mitoaction.org/mitoaction-events/making-our-way-through-the-shifting-sands-of-change/) **Published:** February 3, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 4, 2025 @ 6:00 pm – 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/02/Shifting-Sands-of-Change-Support-Call-1024x1024.png)Managing change is something that our rare disease community is quite familiar with, as we are often forced to grapple with the “unknowns” that present themselves every day. Change, whether good or bad, can feel jarring, unstabilizing and challenge us in our ability to respond. Whether you are navigating a new symptom, new diagnosis, new policies, or the impact of a rare disease on your family life, we encourage you to sit with others in this safe space to discuss the murky waters of change. Join Becky Sansbury, Retired Chaplain/Author of “After the Shock” and Stephanie Harry, Patient Support Coordinator, for this UNRECORDED space. [Register](https://mitoaction-org.zoom.us/meeting/register/tNRhy6SXTreAijA0c_77Zg#/registration) --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-74/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 7, 2025 @ 1:15 pm – 2:30 pm EST Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-25/) **Published:** January 16, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 28, 2025 @ 6:00 pm – 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)MitoAction recognizes that men impacted by mitochondrial disease face a unique set of circumstances. Whether you navigate living with or caring for a loved one with mito, the support calls for men provide an opportunity to connect with others who can relate best. If you are a patient, parent, caregiver, friend, or loved one, feel free to join us for a monthly support call just for men in the mitochondrial disease community! [Register Now](https://mitoaction-org.zoom.us/meeting/register/tZwkcO-hqzgtEtU8nUq0DF3yU1Kgn1gux6Bw) **Tags:** mens support, mito support, patient support, rare disease support **Event Categories:** Men’s Support Call, Patient Support, Support Calls --- ### [2025 Mito Town Meeting](https://www.mitoaction.org/mitoaction-events/2025-mito-town-meeting/) **Published:** November 12, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 10, 2025 @ 12:00 pm – 2:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2024/11/2025-town-mtg-banner-1-1024x296.jpg) The annual mito town meeting is our way of kicking off the new year by sharing all that we have in store for the next 12 months! We will hear from organizations and companies around the globe that have special opportunities, programs and projects for patients and families affected by mitochondrial disease. [Register!](https://mitoaction-org.zoom.us/webinar/register/WN_6OjzceDUQASaVe-kPBqljg) **2025 Mito Town Meeting Agenda** [2025-Mito-Town-Meeting-Agenda-Instructions.docx-Google-Docs](https://www.mitoaction.org/wp-content/uploads/2024/11/2025-Mito-Town-Meeting-Agenda-Instructions.docx-Google-Docs.pdf) **Event Categories:** Monthly Expert Series --- ### [Round Table: Follow-up discussion with Dr. Ted Toufas](https://www.mitoaction.org/mitoaction-events/round-table-follow-up-discussion-with-dr-ted-toufas/) **Published:** January 8, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 15, 2025 @ 7:00 pm – 8:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2025/01/ES-Jan-15-Toufas-1024x1024.png)Join us on January 15, 2025 at 7 pm EST for a special roundtable discussion with Dr. Ted Toufas, Clinical Pharmacist and Pharmacist-in-Charge of the Acton Pharmacy Compounding Lab who has a Bachelor’s of Science from Worcester Polytechnic Institute in Biochemistry & Genetics. Dr. Ted Toufas is joining us to discuss outstanding questions from his Part one of two series, “Ins and Outs of the Mito Cocktail” where he explained how our bodies digest and absorb nutrients from food, and what difficulties exist in getting supplements/nutrients into our cells and mitochondria. If you have not had a chance to watch his presentation from December, we encourage you to take a moment and review it [here](https://www.mitoaction.org/resources/expert-series-ins-and-outs-mito-cocktail/?_gl=1*rw4j5d*_up*MQ..*_gs*MQ..&gclid=Cj0KCQiAvvO7BhC-ARIsAGFyToXUcnaDm-uezI7dW64uxfsvO2Z8unCPGLvHLzbtOltWBBEf5utV1ewaAnpoEALw_wcB) and then register for our **non-recorded round table discussion with Dr. Toufas by** **clicking the link below.** [Register](https://mitoaction-org.zoom.us/meeting/register/yhBRe2t1TEO-B4gXL1XNKQ#/registration) **Tags:** mito cocktail, round table **Event Categories:** Monthly Expert Series --- ### [Expert Series: Hope on the Horizon: The Vital Role of Patients in Clinical Research](https://www.mitoaction.org/mitoaction-events/expert-series-hope-on-the-horizon-the-vital-role-of-patients-in-clinical-research/) **Published:** January 7, 2025 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 7, 2025 @ 12:00 pm – 1:00 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2025/01/ES-Feb-7-Goldstein-4-1024x1024.png)There is unprecedented momentum in the mitochondrial disease clinical trial landscape, and the patient community plays a vital role in ensuring these trials have the potential to lead to new and effective treatments. This expert series aims to demystify clinical trial participation and answer your most pressing questions. Dr. Amy Goldstein, Clinical Director of the Mitochondrial Medicine Frontier Program will discuss what to expect if you participate in clinical trials, and highlight their importance in the drug approval process, and Chad Glasser, Sr. Director of Clinical Research at Tisento Therapeutics, will discuss the actively recruiting PRIZM MELAS study. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_sH1cMlAjQFK3o8Tcy7Gp9g#/registration) **Tags:** clinical trials, expert series **Event Categories:** Events, Monthly Expert Series --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-24/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 16, 2025 @ 8:30 pm – 9:30 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-23/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 18, 2025 @ 8:30 pm – 9:30 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-9/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 21, 2025 @ 8:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-10/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 18, 2025 @ 8:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-11/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 18, 2025 @ 8:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-16/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 15, 2025 @ 8:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-17/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 20, 2025 @ 8:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-18/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 17, 2025 @ 8:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-20/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 19, 2025 @ 8:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-21/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 16, 2025 @ 8:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-22/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 21, 2025 @ 8:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Falmouth Road Race 2025](https://www.mitoaction.org/mitoaction-events/falmouth-road-race-2025/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 17, 2025 @ 12:00 am – 4:00 am EDT **Event Categories:** Events --- ### [Matthew Harty Camper Fund Scholarship Opens](https://www.mitoaction.org/mitoaction-events/matthew-harty-camper-fund-scholarship-opens/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 1, 2025 @ 12:00 am – 5:00 am EST **Event Categories:** Events --- ### [Matthew Harty Golf Tournament 2025](https://www.mitoaction.org/mitoaction-events/matthew-harty-golf-tournament-2025/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 6, 2025 @ 12:00 am – 4:00 am EDT **Event Categories:** Events, Matthew Harty Golf Tournament --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-22/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 11, 2025 @ 8:15 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-21/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 9, 2025 @ 8:15 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [Barth Syndrome Awareness Day](https://www.mitoaction.org/mitoaction-events/barth-syndrome-awareness-day/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 5, 2025 All day **Event Categories:** Awareness --- ### [Clinical Trials Day](https://www.mitoaction.org/mitoaction-events/clinical-trials-day/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 20, 2025 All day **Event Categories:** Awareness --- ### [Giving Tuesday](https://www.mitoaction.org/mitoaction-events/giving-tuesday-2/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 2, 2025 All day **Event Categories:** Awareness --- ### [World Rare Disease Day - Jeans for Genes](https://www.mitoaction.org/mitoaction-events/world-rare-disease-day-jeans-for-genes-2/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 28, 2025 All day **Event Categories:** Awareness --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-16/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 10, 2025 @ 8:15 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-17/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 8, 2025 @ 8:15 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-19/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 10, 2025 @ 8:15 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-20/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 14, 2025 @ 8:15 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-13/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 9, 2025 @ 8:15 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-14/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 13, 2025 @ 8:15 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-15/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 13, 2025 @ 8:15 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-4/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 9, 2024 @ 8:30 pm – 9:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-5/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 13, 2024 @ 8:30 pm – 9:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-6/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 12, 2024 @ 8:30 pm – 9:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-7/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 15, 2024 @ 8:30 pm – 9:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-8/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 20, 2024 @ 8:30 pm – 9:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-12/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 17, 2024 @ 8:30 pm – 9:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-13/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 15, 2024 @ 8:30 pm – 9:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-14/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 19, 2024 @ 8:30 pm – 9:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-15/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 17, 2024 @ 8:30 pm – 9:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-6/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 18, 2025 @ 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Event Categories:** MitoChampion --- ### [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-5/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 21, 2025 @ 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Event Categories:** MitoChampion --- ### [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-4/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 16, 2025 @ 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Event Categories:** MitoChampion --- ### [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-3/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 19, 2025 @ 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Event Categories:** MitoChampion --- ### [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-2/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 19, 2025 @ 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Event Categories:** MitoChampion --- ### [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 15, 2025 @ 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Event Categories:** MitoChampion --- ### [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-7/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 16, 2025 @ 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Event Categories:** MitoChampion --- ### [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-8/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 20, 2025 @ 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Event Categories:** MitoChampion --- ### [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-9/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 17, 2025 @ 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Event Categories:** MitoChampion --- ### [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-10/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 15, 2025 @ 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Event Categories:** MitoChampion --- ### [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-11/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 19, 2025 @ 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Event Categories:** MitoChampion --- ### [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-12/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 17, 2025 @ 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Event Categories:** MitoChampion --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-112/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 21, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-113/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 5, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-115/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 19, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-111/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 14, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-106/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 10, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-107/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 17, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-108/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 24, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-109/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 31, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-102/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 12, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-103/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 19, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-104/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 26, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-97/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 1, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-98/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 8, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-99/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 15, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-100/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 22, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-92/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 20, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-93/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 27, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-94/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 11, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-95/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 18, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-96/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 25, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-91/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 13, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-87/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 16, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-88/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 23, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-89/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 30, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-83/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 11, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-84/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 25, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-85/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 2, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-79/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 14, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-80/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 21, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-81/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 28, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-73/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 31, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-75/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 14, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-76/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 21, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-77/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 28, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-70/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 3, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-71/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 17, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-72/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 24, 2025 @ 12:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-5/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 28, 2025 @ 8:00 pm Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-6/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 25, 2025 @ 8:00 pm Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-7/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 23, 2025 @ 8:00 pm Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-8/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 27, 2025 @ 8:00 pm Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-9/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 24, 2025 @ 8:00 pm Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-10/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 22, 2025 @ 8:00 pm Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 22, 2025 @ 8:00 pm Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-4/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 23, 2025 @ 8:00 pm Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-20/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 4, 2025 @ 6:00 pm Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-22/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 6, 2025 @ 6:00 pm Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-23/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 4, 2025 @ 6:00 pm Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-13/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 6, 2025 @ 6:00 pm Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-14/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 6, 2025 @ 6:00 pm Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-15/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 3, 2025 @ 6:00 pm Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-16/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 1, 2025 @ 6:00 pm Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-17/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 5, 2025 @ 6:00 pm Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Support Calls --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-19/) **Published:** December 11, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 7, 2025 @ 6:00 pm Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call, Support Calls --- ### [Expert Series: Ins and Outs of the Mito Cocktail: Part 1 of 2](https://www.mitoaction.org/mitoaction-events/expert-series-ins-and-outs-of-the-mito-cocktail-part-1-of-2/) **Published:** November 21, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 6, 2024 @ 12:00 pm – 1:00 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2024/11/ES-Dec-6-Toufas-1024x1024.png)In “Ins and Outs of the Mito Cocktail: Part 1 of 2,” Dr. Toufas will explore how our bodies digest and absorb nutrients from food, and discuss what difficulties exist in getting supplements/nutrients into our cells and mitochondria. He will take a deeper look at the Krebs Cycle and Electron Transport Chain, explain which vitamins and cofactors are used in these processes, and discuss ROS (Reactive Oxygen Species)/Oxidative damage. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_uLC5pce2S9m0nZ_DdoNa6Q) **Tags:** expert series, mito cocktail **Event Categories:** Events, Monthly Expert Series --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-22/) **Published:** September 4, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 26, 2024 @ 6:00 pm – 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)MitoAction recognizes that men impacted by mitochondrial disease face a unique set of circumstances. Whether you navigate living with or caring for a loved one with mito, the support calls for men provide an opportunity to connect with others who can relate best. If you are a patient, parent, caregiver, friend, or loved one, feel free to join us for a monthly support call just for men in the mitochondrial disease community! [Register Now](https://mitoaction-org.zoom.us/meeting/register/tZwkcO-hqzgtEtU8nUq0DF3yU1Kgn1gux6Bw) **Tags:** mens support, mito support, patient support, rare disease support **Event Categories:** Men’s Support Call, Patient Support, Support Calls --- ### [Wondering Wednesdays: Ask the Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-ask-the-genetic-counselor-4/) **Published:** November 8, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 11, 2024 @ 8:00 pm – 9:00 pm Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Open Mito Mic & Art Show](https://www.mitoaction.org/mitoaction-events/open-mito-mic-and-art-show/) **Published:** September 11, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 10, 2024 @ 6:00 pm – 7:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2024/09/2024-Art-Show-website-graphic-1024x1024.png)A call to ALL visual artists, poets, comedians, singers, quilters…and creators in our Mito Community!! **MitoAction’s Second Annual Mito Mic and Art Show** will be hosted on **November 10 at 6pm EST!** All submissions are due October 21, 2024! We all know that living with mitochondrial disease forces us, constantly, into spaces where we must *get creative* as we seek to interact with the world around us. Consider taking the month of September and October to think about Mito in a new way, explore your artistic capacity, and engage with the topic, “Creative Expressions of the Soul.” Please submit a picture or video of your piece, poem, song, comedy bit etc. and your **Artist Release Form** (find below) to [sharry@mitoaction.org](mailto:srharry@mitoaction.org). All pieces are due October 21, 2024. Submissions will be transformed into a singular video for our virtual art show on November 10 at 6 pm (EST). [Artist Release Form](https://www.mitoaction.org/wp-content/uploads/2024/09/Artist_Creator-Release-Form.pdf) [Register!](https://mitoaction-org.zoom.us/meeting/register/tZ0odeCtrDovHtEQFekpd6v4R0TJnb_ZkrVP) **Tags:** art show, open mic --- ### [Expert Series: Pyruvate Dehydrogenase Complex Deficiency Essentials: including current trials/research and prospects for newborn screening](https://www.mitoaction.org/mitoaction-events/expert-series-pyruvate-dehydrogenase-complex-deficiency-essentials-including-current-trials-research-and-prospects-for-newborn-screening/) **Published:** October 17, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 1, 2024 @ 12:00 pm – 1:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2024/10/ES-Nov-1-Bedoyan-1-1024x1024.png)Dr. Bedoyan will present the essentials for understanding pyruvate dehydrogenase complex deficiency (PDCD) and detail current clinical trials and therapeutics research for this disorder at UPMC Children’s Hospital of Pittsburgh. He will also describe the elements of newborn screening (NBS) and update the audience of current research and prospects for future PDCD NBS. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_DKIxNZuwTY-Ch8wSXkjbEQ) **Tags:** expert series, newborn screening, pdcd **Event Categories:** Events, Monthly Expert Series --- ### [Colorado MitoSocial](https://www.mitoaction.org/mitoaction-events/colorado-mitosocial/) **Published:** October 8, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 29, 2024 @ 2:15 pm – 3:15 pm ![](https://www.mitoaction.org/wp-content/uploads/2024/10/Colorado-Mitosocial-October-1024x1024.png)You are invited to the Colorado Mito Patient and Family Social hosted by MitoAction: - Meet with other families living with mitochondrial disease - Make connections with others in your area who face similar situations daily [Register](https://mitoaction-org.zoom.us/meeting/register/tZwpcuyprz0sE9NimUq__K52oVJRFNcy19ti) **Tags:** mitosocial **Event Categories:** MitoSocials --- ### [Texas MitoSocial](https://www.mitoaction.org/mitoaction-events/texas-mitosocial/) **Published:** October 2, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 22, 2024 @ 1:30 pm – 2:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2024/10/Texas-Mitosocial-October-1024x1024.png)You are invited to the Texas Mito Patient and Family Social hosted by MitoAction: - Meet with other families living with mitochondrial disease - Make connections with others in your area who face similar situations daily [Register](https://mitoaction-org.zoom.us/meeting/register/tZ0vdemuqz8iGdToHoKy3RxSfpGFSdMGvpWF) **Tags:** mitosocial **Event Categories:** MitoSocials --- ### [Arizona MitoSocial](https://www.mitoaction.org/mitoaction-events/arizona-mitosocial/) **Published:** October 2, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 16, 2024 @ 3:15 pm – 4:15 pm ![](https://www.mitoaction.org/wp-content/uploads/2024/10/Arizona-Mitosocial-October-1-1024x1024.png)You are invited to the Arizona Mito Patient and Family Social hosted by MitoAction: - Meet with other families living with mitochondrial disease - Make connections with others in your area who face similar situations daily [Register](https://mitoaction-org.zoom.us/meeting/register/tZcvcOmhrD8pH9YlRPlJlkngM9binQjBPqrH) **Tags:** mitosocial **Event Categories:** MitoSocials --- ### [Kansas MitoSocial](https://www.mitoaction.org/mitoaction-events/kansas-mitosocial/) **Published:** September 27, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 6, 2024 @ 4:30 pm – 5:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2024/09/Kansas-Mitosocial-September--1024x1024.png)You are invited to the Kansas Mito Patient and Family Social hosted by MitoAction: - Meet with other families living with mitochondrial disease - Make connections with others in your area who face similar situations daily [Register](https://mitoaction-org.zoom.us/meeting/register/tZUlcuyhrjkiHNMrWoyL8xgzGVJ0SFucT4lq) **Tags:** mitosocial **Event Categories:** MitoSocials --- ### [2024 Energy Walk - Riverside](https://www.mitoaction.org/mitoaction-events/2024-energy-walk-riverside/) **Published:** September 23, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 6, 2024 @ 9:00 am – 12:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2024/09/Get-Excited.png)[Register](https://give.mitoaction.org/event/2024-riverside-mitoaction-energy-walk-and-5k/e582124) **Event Categories:** Energy Walk, Events --- ### [Closed for the Holidays!](https://www.mitoaction.org/mitoaction-events/closed-for-the-holidays/) **Published:** September 23, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 23, 2024 – January 2, 2025 ![](https://www.mitoaction.org/wp-content/uploads/2024/09/Happy-Holidays-2024-1024x1024.png)MitoAction will be closed for the holidays from December 23rd through January 2nd. We wish everyone a happy and healthy holiday season! --- ### [Closed for Thanksgiving](https://www.mitoaction.org/mitoaction-events/closed-for-thanksgiving/) **Published:** September 23, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 27, 2024 – November 29, 2024 ![](https://www.mitoaction.org/wp-content/uploads/2024/09/Thanksgiving-2024-1024x1024.png)MitoAction will be closed for Thanksgiving November 27th through 29th. We hope everyone has a happy and healthy holiday. We are so thankful for our incredible MitoAction community! --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-67/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 6, 2024 @ 1:15 pm – 2:30 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-63/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 1, 2024 @ 1:15 pm – 2:30 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-59/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 4, 2024 @ 1:15 pm – 2:30 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-56/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 13, 2024 @ 1:15 pm – 2:30 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Expert Series: Managing the Highs and Lows of Mitochondrial Disease: a review and updates on diabetes and hypoglycemia](https://www.mitoaction.org/mitoaction-events/expert-series-managing-the-highs-and-lows-of-mitochondrial-disease-a-review-and-updates-on-diabetes-and-hypoglycemia/) **Published:** September 11, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 4, 2024 @ 12:00 pm – 1:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2024/09/ES-October-4-1024x1024.png)Join Dr. McCormack and Dr. Guzman as they review and discuss the causes of high and low blood sugars in mitochondrial disease, while also providing important updates on mitochondrial diabetes and hypoglycemia management. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_cPpH1GRRT9O0M0oE94w1Fg#/registration) **Tags:** diabetes, expert series, hypoglycemia **Event Categories:** Events, Monthly Expert Series --- ### [Expert Series: Mitochondrial Disease and PMM](https://www.mitoaction.org/mitoaction-events/expert-series-mitochondrial-disease-and-pmm/) **Published:** September 4, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 13, 2024 @ 12:00 pm – 1:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2024/09/ES-Sept-13-Amel-Karaa-1024x1024.png)What is Primary Mitochondrial Myopathy (PMM)? Join MitoAction and Amel Karaa as she discusses the terminology used to describe mitochondrial diseases and what constitutes “primary mitochondrial myopathy”. We will review why we use the term PMM and why we need to classify patients with mitochondrial disease within different groups. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_DIhvxYlCSPuwSe-IfzQ22A) **Tags:** compassionate use, expanded access, experimental therapies, expert series **Event Categories:** Events, Monthly Expert Series --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-23/) **Published:** September 4, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 20, 2024 @ 1:00 pm – 2:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)MitoAction recognizes that men impacted by mitochondrial disease face a unique set of circumstances. Whether you navigate living with or caring for a loved one with mito, the support calls for men provide an opportunity to connect with others who can relate best. If you are a patient, parent, caregiver, friend, or loved one, feel free to join us for a monthly support call just for men in the mitochondrial disease community! [Register Now](https://mitoaction-org.zoom.us/meeting/register/tZwkcO-hqzgtEtU8nUq0DF3yU1Kgn1gux6Bw) **Tags:** mens support, mito, mito support, rare disease support **Event Categories:** Men’s Support Call, Patient Support, Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-24/) **Published:** September 4, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 15, 2024 @ 1:00 pm – 2:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)MitoAction recognizes that men impacted by mitochondrial disease face a unique set of circumstances. Whether you navigate living with or caring for a loved one with mito, the support calls for men provide an opportunity to connect with others who can relate best. If you are a patient, parent, caregiver, friend, or loved one, feel free to join us for a monthly support call just for men in the mitochondrial disease community! [Register Now](https://mitoaction-org.zoom.us/meeting/register/tZwkcO-hqzgtEtU8nUq0DF3yU1Kgn1gux6Bw) **Tags:** mens support, mito, mito support, rare disease support **Event Categories:** Men’s Support Call, Patient Support, Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-september/) **Published:** September 19, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 17, 2023 @ 1:00 pm – 3:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)MitoAction recognizes that men impacted by mitochondrial disease face a unique set of circumstances. Whether you navigate living with or caring for a loved one with mito, the support calls for men provide an opportunity to connect with others who can relate best. If you are a patient, parent, caregiver, friend, or loved one, feel free to join us for a monthly support call just for men in the mitochondrial disease community! **Tags:** mens support, mito, mito support, rare disease support **Event Categories:** Men’s Support Call, Patient Support, Support Calls --- ### [North Carolina MitoSocial](https://www.mitoaction.org/mitoaction-events/nc-mitosocial/) **Published:** August 30, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 14, 2024 @ 2:30 pm – 3:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2024/08/NC-Mitosocial-September-14-1024x1024.png)You are invited to the North Carolina Mito Patient and Family Social hosted by MitoAction: - Meet with other families living with mitochondrial disease - Make connections with others in your area who face similar situations daily [Register](https://mitoaction-org.zoom.us/meeting/register/tZUkc-iopz4sG9fk9QByj8rvXeaThiZJIcQ8) **Tags:** mitosocial **Event Categories:** MitoSocials --- ### [MitoArtisan's Playtime - Course 3](https://www.mitoaction.org/mitoaction-events/mitoartisans-playtime-course-3/) **Published:** August 30, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 15, 2024 @ 3:00 pm – 4:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2024/08/MitoArtisans-Course-3-1024x1024.png)Creating and connecting with other artists creates healing. Whether you are young or old, a seasoned artist or just curious, we encourage you to join us on September 15th as we explore art together. Christine Knox, a seasoned illustrator, quilter, artist and MitoChampion, will teach us how to use various drawing materials and share techniques to enhance our drawing skills. This class is a safe place for **all** of our mito patients and families to explore! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEpcuqvrzotE9HgIFEHuepKxmpmcAo1WN1_) **Download the Course 3 Supply List, Description, and Outline to prepare for this event!** [Ornament Drawing Prototype](https://www.mitoaction.org/wp-content/uploads/2024/08/Ornament-Drawing-Prototype.pdf)[Download](https://www.mitoaction.org/wp-content/uploads/2024/08/Ornament-Drawing-Prototype.pdf) *Our MitoArtisan’s Playtime lasts between 1.5-2 hours, but we recognize that everyone’s energy is different in our Mito Community! Please know that we support our participants pacing themselves, breaking as needed, and enjoying this time in a way that is most meaningful to them! Please join us for as long as you are able! All are welcome!* **Event Categories:** MitoArtisan's Playtime --- ### [2024 Energy Walk & 5k - Rochester](https://www.mitoaction.org/mitoaction-events/2024-mitoaction-energy-walk-5k-rochester/) **Published:** March 13, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 25, 2024 @ 9:00 am – 1:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2024/03/Rochester-EW-website.png)[Register](https://www.mitoaction.org/events/energywalk/energywalkrochester/) **Event Categories:** Energy Walk, Events --- ### [Monthly MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/monthly-mitochampions-meeting-9/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 18, 2024 @ 7:00 pm – 9:00 pm [![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)](https://mitoaction-org.zoom.us/j/89327472755?pwd=lalqoSQW1UWhLSMSC8lajoikoyVyaa.1)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. Interested in becoming a MitoChampion? Email sharry@mitoaction.org ## Related Events - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-21/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-21/) September 16 @ 7:00 pm – 8:00 pm - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-22/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-22/) October 21 @ 7:00 pm – 8:00 pm - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-23/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-23/) November 18 @ 7:00 pm – 8:00 pm **Event Categories:** MitoChampion --- ### [Mitochondrial Disease Awareness Week](https://www.mitoaction.org/mitoaction-events/mitochondrial-disease-awareness-week/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 16, 2024 – September 22, 2024 **Event Categories:** Awareness Week --- ### [2024 Energy Walk - Hartford](https://www.mitoaction.org/mitoaction-events/2024-energy-walk-hartford/) **Published:** August 20, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 7, 2024 @ 9:00 am – 12:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2024/08/Hartford.png)[Register](https://www.mitoaction.org/events/energywalk/energy-walk-hartford-ct/) **Event Categories:** Energy Walk, Events --- ### [TK2D Awareness Day](https://www.mitoaction.org/mitoaction-events/tk2d-awareness-day-2/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 10, 2024 All day ![](https://www.mitoaction.org/wp-content/uploads/2024/01/1080x1080-Uniting-the-Community-Frame-1-2-1024x1024.png) **Event Categories:** Awareness Week --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-53/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 23, 2024 @ 1:15 pm – 2:30 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Expert Series: Expanded Access and Compassionate Use of Experimental Therapies](https://www.mitoaction.org/mitoaction-events/expert-series-expanded-access-and-compassionate-use-of-experimental-therapies/) **Published:** August 12, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 23, 2024 @ 12:00 pm – 1:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2024/08/ES-Aug-23-Koenig-1024x1024.png) “Expanded Access” and “Compassionate Use” are terms that are utilized in our rare disease community, but what do they mean? How do patients learn about, get involved, better understand the qualifications, and talk with their doctor about participation in either of these programs? Join MitoAction and Dr. Koenig as we dive deep into better understanding the differences and overlap between “Expanded Access” and “Compassionate Use” therapies. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_WSIbMba_QCOaI1clJlqB7Q) **Tags:** compassionate use, expanded access, experimental therapies, expert series **Event Categories:** Events, Monthly Expert Series --- ### [Matthew Harty Golf Tournament](https://www.mitoaction.org/mitoaction-events/matthew-harty-golf-tournament/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 7, 2024 @ 8:30 am – 12:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2024/01/2024-MHCF-Golf-Outing-SM.png) [Register](https://give.mitoaction.org/event/2024-matthew-harty-camper-fund-golf-tournament/e547618) **Event Categories:** Matthew Harty Golf Tournament --- ### [Energy Walk - Boston](https://www.mitoaction.org/mitoaction-events/energy-walk-boston-copy/) **Published:** February 2, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 29, 2024 @ 5:00 pm – 9:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2024/08/boston-EW-half-page-300x202.png) **Join us for the 20th annual Energy Walk in Boston!** Gather your team and get ready to go for a walk all together throughout the zoo while raising awareness for mitochondrial disease! Whether you walk as an individual, create a team or volunteer, you’re making a difference in the lives of patients and families who rely on us. Your fundraising helps MitoAction change the future of health for every mito patient, here and around the world. This family event offers support, friendship, and fun for everyone! The day’s highlights include a walk around the Franklin Park Zoo, tons of activities including crafts, live entertainment, music, our legendary raffle, and more! Franklin Park Zoo is wheelchair friendly. Register, fundraise and **JOIN US**! [Register!](https://give.mitoaction.org/event/2024-mitoaction-energy-walk-boston/e547622) [Learn More](https://www.mitoaction.org/events/energywalk/) **Event Categories:** Energy Walk, Events --- ### [California MitoSocial](https://www.mitoaction.org/mitoaction-events/california-mitosocial-2/) **Published:** July 11, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 10, 2024 @ 4:00 pm – 5:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2024/07/California-Mitosocial-August--1024x1024.png)You are invited to the California Mito Patient and Family Social hosted by MitoAction: - Meet with other families living with mitochondrial disease - Make connections with others in your area who face similar situations daily [Register](https://mitoaction-org.zoom.us/meeting/register/tZcqd-CoqjwvGNMXQnHwqVY5j4gZqJ0fxdC6) **Tags:** mitosocial **Event Categories:** MitoSocials --- ### [Celebrating the life of Charlie Mitter](https://www.mitoaction.org/mitoaction-events/celebrating-the-life-of-charlie-mitter/) **Published:** June 25, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 30, 2024 @ 3:00 pm – 4:00 pm ![Charlie Mitter Memorial](https://www.mitoaction.org/wp-content/uploads/2024/06/Charlie-Mitter-Virtual-Memorial-1024x726.png)Charlie Mitter was a beloved member of the MitoAction team, but also the entire mitochondrial disease community. In memory of his daughter Caroline who passed away from mitochondrial disease, Charlie took his role of “bridging the gap” between the practical and scientific community seriously. He was a consistent presence in our Facebook community and to many of our mito families via email. Charlie passed away on February 27, 2024. MitoAction would like to honor and remember him by hosting a virtual time of remembrance on **June 30, 2024 at 3pm EST**. We will create a slideshow compiling thoughtful posts that he shared and meaningful words that YOU would like to to share. Feel free to submit videos and/or pictures with your name and connection to Charlie to: for the video. We will also have a time during this event for people to share directly from their hearts. We encourage anyone who is interested and appreciated Charlie to join us by registering for this event [Register](https://mitoaction-org.zoom.us/meeting/register/tZ0tc-GrqzspH9NWgPUTQgCWsq8SmeHEZuUp) --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-47/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 12, 2024 @ 1:15 pm – 2:30 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [CLOSED - Fourth of July](https://www.mitoaction.org/mitoaction-events/closed-fourth-of-july/) **Published:** June 25, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 3, 2024 @ 12:00 am – July 7, 2024 @ 11:59 pm **MitoAction will Be closed from Wednesday, July 3rd to Sunday, July 7th for the Fourth of July Holiday Weekend. We will reopen with normal business hours on Monday, July 8th. Wishing everyone a fun and safe holiday weekend!** --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-12/) **Published:** August 2, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 11 @ 7:38 pm Join us for a support call just for the men of the mitochondrial disease community. Spend an hour talking about challenges, victories and anything else you’d like to discuss. [Register](https://mitoaction-org.zoom.us/meeting/register/tZMoceiorzMvEtL8rUgNHkyFy3kvEdvVcE1n) ### Details - Date: September 11 - Time: 7:38 pm - Event Categories: [Events](https://www.mitoaction.org/calendar/category/events/), [Men’s Support Call](https://www.mitoaction.org/calendar/category/mens-support-call/), [Support Calls](https://www.mitoaction.org/calendar/category/support-calls/) **Event Categories:** Events, Men’s Support Call, Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-13/) **Published:** August 2, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 11 @ 7:38 pm Join us for a support call just for the men of the mitochondrial disease community. Spend an hour talking about challenges, victories and anything else you’d like to discuss. [Register](https://mitoaction-org.zoom.us/meeting/register/tZMoceiorzMvEtL8rUgNHkyFy3kvEdvVcE1n) ### Details - Date: September 11 - Time: 7:38 pm - Event Categories: [Events](https://www.mitoaction.org/calendar/category/events/), [Men’s Support Call](https://www.mitoaction.org/calendar/category/mens-support-call/), [Support Calls](https://www.mitoaction.org/calendar/category/support-calls/) **Event Categories:** Events, Men’s Support Call, Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-14/) **Published:** August 3, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 11 @ 7:38 pm Join us for a support call just for the men of the mitochondrial disease community. Spend an hour talking about challenges, victories and anything else you’d like to discuss. [Register](https://mitoaction-org.zoom.us/meeting/register/tZMoceiorzMvEtL8rUgNHkyFy3kvEdvVcE1n) ### Details - Date: September 11 - Time: 7:38 pm - Event Categories: [Events](https://www.mitoaction.org/calendar/category/events/), [Men’s Support Call](https://www.mitoaction.org/calendar/category/mens-support-call/), [Support Calls](https://www.mitoaction.org/calendar/category/support-calls/) **Event Categories:** Events, Men’s Support Call, Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-15/) **Published:** August 3, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 11 @ 7:38 pm Join us for a support call just for the men of the mitochondrial disease community. Spend an hour talking about challenges, victories and anything else you’d like to discuss. [Register](https://mitoaction-org.zoom.us/meeting/register/tZMoceiorzMvEtL8rUgNHkyFy3kvEdvVcE1n) ### Details - Date: September 11 - Time: 7:38 pm - Event Categories: [Events](https://www.mitoaction.org/calendar/category/events/), [Men’s Support Call](https://www.mitoaction.org/calendar/category/mens-support-call/), [Support Calls](https://www.mitoaction.org/calendar/category/support-calls/) **Event Categories:** Events, Men’s Support Call, Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-16/) **Published:** August 3, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 11 @ 7:38 pm Join us for a support call just for the men of the mitochondrial disease community. Spend an hour talking about challenges, victories and anything else you’d like to discuss. [Register](https://mitoaction-org.zoom.us/meeting/register/tZMoceiorzMvEtL8rUgNHkyFy3kvEdvVcE1n) ### Details - Date: September 11 - Time: 7:38 pm - Event Categories: [Events](https://www.mitoaction.org/calendar/category/events/), [Men’s Support Call](https://www.mitoaction.org/calendar/category/mens-support-call/), [Support Calls](https://www.mitoaction.org/calendar/category/support-calls/) **Event Categories:** Events, Men’s Support Call, Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-17/) **Published:** August 3, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 11 @ 7:38 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)Join us for a support call just for the men of the mitochondrial disease community. Spend an hour talking about challenges, victories and anything else you’d like to discuss. [Register](https://mitoaction-org.zoom.us/meeting/register/tZEtd--gpj8iGNN9IIwCiytBy6urqFiuzt52) ### Details - Date: September 11 - Time: 7:38 pm - Event Categories: [Events](https://www.mitoaction.org/calendar/category/events/), [Men’s Support Call](https://www.mitoaction.org/calendar/category/mens-support-call/), [Support Calls](https://www.mitoaction.org/calendar/category/support-calls/) **Event Categories:** Events, Men’s Support Call, Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-18/) **Published:** August 3, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 11 @ 7:38 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)Join us for a support call just for the men of the mitochondrial disease community. Spend an hour talking about challenges, victories and anything else you’d like to discuss. [Register](https://mitoaction-org.zoom.us/meeting/register/tZEtd--gpj8iGNN9IIwCiytBy6urqFiuzt52) ### Details - Date: September 11 - Time: 7:38 pm - Event Categories: [Events](https://www.mitoaction.org/calendar/category/events/), [Men’s Support Call](https://www.mitoaction.org/calendar/category/mens-support-call/), [Support Calls](https://www.mitoaction.org/calendar/category/support-calls/) **Event Categories:** Events, Men’s Support Call, Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-20/) **Published:** August 3, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 11 @ 7:38 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)Join us for a support call just for the men of the mitochondrial disease community. Spend an hour talking about challenges, victories and anything else you’d like to discuss. [Register](https://mitoaction-org.zoom.us/meeting/register/tZEtd--gpj8iGNN9IIwCiytBy6urqFiuzt52) ### Details - Date: September 11 - Time: 7:38 pm - Event Categories: [Events](https://www.mitoaction.org/calendar/category/events/), [Men’s Support Call](https://www.mitoaction.org/calendar/category/mens-support-call/), [Support Calls](https://www.mitoaction.org/calendar/category/support-calls/) **Event Categories:** Events, Men’s Support Call, Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-6/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 5, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-18/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 19, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-21/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 26, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-24/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 2, 2024 @ 1:15 pm – 2:15 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9#/registration) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-26/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 9, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-27/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 16, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-28/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 23, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-29/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 1, 2024 @ 1:15 pm – 2:30 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-30/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 8, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-31/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 15, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-32/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 22, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-33/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 29, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-34/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 5, 2024 @ 1:15 pm – 2:30 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-35/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 12, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-36/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 19, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-37/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 26, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-38/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 3, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-39/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 10, 2024 @ 1:15 pm – 2:30 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-40/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 17, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-41/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 24, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-42/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 31, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-43/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 7, 2024 @ 1:15 pm – 2:30 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-44/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 14, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-45/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 21, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-46/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 28, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-48/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 19, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-49/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-50/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 2, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-51/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 9, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-52/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 16, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-54/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 30, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-55/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 6, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-57/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 20, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-58/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 27, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-60/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 11, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-61/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 18, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-62/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 25, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-64/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 8, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-65/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 15, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-66/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 22, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-afternoon-support-call-14/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 21, 2024 @ 3:00 pm – 4:30 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/j/81380754174?pwd=TB0x0rXvnDX2PtH7HY230sane61OyB.1) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-12/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 12, 2024 @ 8:15 pm – 9:30 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-68/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 13, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-69/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 20, 2024 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) **Event Categories:** Support Calls, Weekly Support Calls --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 11, 2024 @ 8:15 pm – 9:30 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-afternoon-support-call-4/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 25, 2024 @ 3:00 pm – 4:30 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-2srT8tHNDLDhPp-Hqrt0H6raqmnJcd) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-2/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 8, 2024 @ 8:15 pm – 9:30 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ#/registration) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-afternoon-support-call-5/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 22, 2024 @ 3:00 pm – 4:30 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-2srT8tHNDLDhPp-Hqrt0H6raqmnJcd) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-3/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 14, 2024 @ 8:15 pm – 9:30 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-afternoon-support-call-6/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 28, 2024 @ 3:00 pm – 4:30 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-2srT8tHNDLDhPp-Hqrt0H6raqmnJcd) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-4/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 11, 2024 @ 8:15 pm – 9:30 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-5/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 9, 2024 @ 8:15 pm – 9:30 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-afternoon-support-call-8/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 23, 2024 @ 3:00 pm – 4:30 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-2srT8tHNDLDhPp-Hqrt0H6raqmnJcd) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-6/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 13, 2024 @ 8:15 pm – 9:30 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-afternoon-support-call-9/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 27, 2024 @ 3:00 pm – 4:30 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-2srT8tHNDLDhPp-Hqrt0H6raqmnJcd) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-7/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 11, 2024 @ 8:15 pm – 9:30 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-afternoon-support-call-10/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 25, 2024 @ 3:00 pm – 4:30 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-2srT8tHNDLDhPp-Hqrt0H6raqmnJcd) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-8/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 8, 2024 @ 8:15 pm – 9:30 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-afternoon-support-call-11/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 22, 2024 @ 3:00 pm – 4:30 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-2srT8tHNDLDhPp-Hqrt0H6raqmnJcd) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-9/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 12, 2024 @ 8:15 pm – 9:30 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-afternoon-support-call-12/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 26, 2024 @ 3:00 pm – 4:30 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-2srT8tHNDLDhPp-Hqrt0H6raqmnJcd) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-10/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 10, 2024 @ 8:15 pm – 9:30 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-afternoon-support-call-13/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 24, 2024 @ 3:00 pm – 4:30 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-2srT8tHNDLDhPp-Hqrt0H6raqmnJcd) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-11/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 14, 2024 @ 8:15 pm – 9:30 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [MitoArtisan's Playtime - Course 2](https://www.mitoaction.org/mitoaction-events/mitoartisans-playtime-course-2/) **Published:** June 20, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 14, 2024 @ 3:00 pm – 5:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2024/06/MitoArtisans-Course-2-1024x1024.png)Creating and connecting with other artists creates healing. Whether you are young or old, a seasoned artist or just curious, we encourage you to join us on July 14th as we explore art together. Christine Knox, a seasoned illustrator, quilter, artist and MitoChampion, will teach us how to use various drawing materials and share techniques to enhance our drawing skills. This class is a safe place for **all** of our mito patients and families to explore! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYude6qpz8qH9dvKy-Kw-3iftS0ajcrKGHZ) **Download the Course 2 Supply List, Description, and Outline Sketch to prepare for this event!** [Course-2\_-Eye-to-the-Soul](https://www.mitoaction.org/wp-content/uploads/2024/06/Course-2_-Eye-to-the-Soul.pdf)[Download](https://www.mitoaction.org/wp-content/uploads/2024/06/Course-2_-Eye-to-the-Soul.pdf) *Our MitoArtisan’s Playtime lasts between 1.5-2 hours, but we recognize that everyone’s energy is different in our Mito Community! Please know that we support our participants pacing themselves, breaking as needed, and enjoying this time in a way that is most meaningful to them! Please join us for as long as you are able! All are welcome!* **Event Categories:** MitoArtisan's Playtime --- ### [Wondering Wednesdays: Ask the Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-ask-the-genetic-counselor-8/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 24, 2024 @ 8:00 pm – 9:00 pm Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Wondering Wednesdays: Ask the Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-ask-the-genetic-counselor-7/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 27, 2024 @ 8:00 pm – 9:00 pm Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Wondering Wednesdays: Ask the Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-ask-the-genetic-counselor-6/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 28, 2024 @ 8:00 pm – 9:00 pm Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Wondering Wednesdays: Ask the Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-ask-the-genetic-counselor-5/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 24, 2024 @ 8:00 pm – 9:00 pm Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Wondering Wednesdays: Ask the Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-ask-the-genetic-counselor-9/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 22, 2024 @ 8:00 pm – 9:00 pm Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Wondering Wednesdays: Ask the Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-ask-the-genetic-counselor-14/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 23, 2024 @ 8:00 pm – 9:00 pm Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Wondering Wednesdays: Ask the Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-ask-the-genetic-counselor-13/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 25, 2024 @ 8:00 pm – 9:00 pm Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Wondering Wednesdays: Ask the Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-ask-the-genetic-counselor-12/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 28, 2024 @ 8:00 pm – 9:00 pm Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Wondering Wednesdays: Ask the Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-ask-the-genetic-counselor-11/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 24, 2024 @ 8:00 pm – 9:00 pm Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Wondering Wednesdays: Ask the Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-ask-the-genetic-counselor-10/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 26, 2024 @ 8:00 pm – 9:00 pm Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Washington State MitoSocial](https://www.mitoaction.org/mitoaction-events/washington-state-mitosocial/) **Published:** May 28, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 14, 2024 @ 3:30 pm – 4:30 pm ![WA State mitosocial](https://www.mitoaction.org/wp-content/uploads/2024/05/Washington-Mitosocial-1024x1024.png)You are invited to a Washington State Mito Patient and Family Social hosted by MitoAction: - Meet with other families living with mitochondrial disease - Make connections with others in your area who face similar situations daily [Register](https://mitoaction-org.zoom.us/meeting/register/tZMrdu-vqDwtGddv3F28ImybROQgtovitQ4e) **Tags:** mitosocial **Event Categories:** MitoSocials --- ### [Expert Series: Enhancing the Lives of Mitochondrial Disease Patients Through Compounded Treatment Options](https://www.mitoaction.org/mitoaction-events/expert-series-enhancing-the-lives-of-mitochondrial-disease-patients-through-compounded-treatment-options/) **Published:** June 6, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 12, 2024 @ 12:00 pm – 1:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2024/06/ES-July-12-Chemistry-RX-1024x1024.png)Numerous Mitochondrial disease patients consume something known as the “Mito Cocktail”. What is this exactly? How do you decide where to get components of your “Mito Cocktail” and what are the pros and cons of using a compounding pharmacy? How do compounding pharmacies work with clinicians to make sure that patients are receiving the treatments that they need? Join MitoAction and Chemistry RX as we seek to better understand these questions and the compounding pharmacy. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_vJDs_fSiRmGtu046dLIh4w) **Tags:** compounded treatment, expert series, treatment options **Event Categories:** Events, Monthly Expert Series --- ### [California MitoSocial](https://www.mitoaction.org/mitoaction-events/california-mitosocial/) **Published:** May 28, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 15, 2024 @ 4:00 pm – 5:00 pm ![CA MitoSocial](https://www.mitoaction.org/wp-content/uploads/2024/05/California-Mitosocial-1024x1024.png)You are invited to the California Mito Patient and Family Social hosted by MitoAction: - Meet with other families living with mitochondrial disease - Make connections with others in your area who face similar situations daily [Register](https://mitoaction-org.zoom.us/meeting/register/tZ0tcO-opz4jE9dvhZTcJtQKx3tOeO_yf517) **Tags:** mitosocial **Event Categories:** MitoSocials --- ### [SOCIAL PARA PACIENTES Y FAMILIARES DE MITO EN ESPAÑOL](https://www.mitoaction.org/mitoaction-events/social-para-pacientes-y-familiares-de-mito-en-espanol-3/) **Published:** May 28, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 6, 2024 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2024/05/June-Spanish-MITO-SOCIAL-1024x1024.png) [Register](https://mitoaction-org.zoom.us/meeting/register/tZYuf-yupj0rGN2v5wR_3LOcj9QcabxXDcoJ) **Tags:** mitosocial **Event Categories:** MitoSocials --- ### [Expert Series: Extensive DNA Sequencing in Cyclic Vomiting and Chronic Fatigue: Implication for Genetic Testing and Personalized Treatment Options](https://www.mitoaction.org/mitoaction-events/expert-series-extensive-dna-sequencing-in-cyclic-vomiting-and-chronic-fatigue-implication-for-genetic-testing-and-personalized-treatment-options/) **Published:** May 9, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 7, 2024 @ 12:00 pm – 1:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2024/05/ES-June-7-Richard-Boles-1024x1024.png)In May, 2023, Dr. Boles and his research group published a scientific paper on the results of 50 people who had either whole exome or whole genome sequencing. About 30 genes were identified that are highly likely or likely to be risk factors for Cyclic Vomiting Syndrome. The vast majority of these genes involved cation (positively charge salts) channels or mitochondria (energy metabolism), suggesting that disease results from a vicious cycle of cellular over-excitation. Dr. Boles will discuss how genetic information can help find an individual’s genetic predisposition towards cyclic vomiting, and how that translates to treatment options, including those treatments generally not considered in CVS. Lastly, he will briefly discuss 18 chronic fatigue patients with extensive DNA sequencing. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_OUqR4J5US0m1G3UCo9FPKQ) **Tags:** chronic fatigue, cyclic vomiting, DNA, expert series, genetic testing **Event Categories:** Events, Monthly Expert Series --- ### [Expert Series: Understanding diseases of mitochondrial DNA maintenance](https://www.mitoaction.org/mitoaction-events/expert-series-understanding-diseases-of-mitochondrial-dna-maintenance/) **Published:** April 29, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 10, 2024 @ 12:00 pm – 1:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2024/04/May-10-Bill-Copeland-1024x1024.png)This presentation will focus on the diseases that disrupt the normal process of copying our **mitochondrial** DNA. Dr. Copeland will summarize the genes (POLG, POLG2, TWNK, and SSBP1) that are involved in copying our mitochondrial DNA and how they participate in preventing or causing **mutations** in mitochondrial DNA. Then he will focus on the diseases caused by mutations in these genes and the consequences of these mutations on mitochondrial function and health. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_nJF-MbprTKKV1zJo1GGyyg#/registration) **Tags:** DNA, expert series, mutations, POLG **Event Categories:** Events, Monthly Expert Series --- ### [2024 Energy Walk & 5k - Syracuse](https://www.mitoaction.org/mitoaction-events/2023-mitoaction-energy-walk-5k-syracuse-copy/) **Published:** February 2, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 15, 2024 @ 9:00 am – 1:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2024/02/Syracuse.png)[Register](https://give.mitoaction.org/event/2024-mitoaction-energy-walk-and-5k-syracuse/e547625) [Learn More](https://www.mitoaction.org/events/energywalk/energywalksyracuse/) **Event Categories:** Energy Walk, Events --- ### [INFORM Lecture Series](https://www.mitoaction.org/mitoaction-events/inform-lecture-series-2/) **Published:** April 19, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 20, 2024 @ 10:00 am – 11:00 am ![](https://www.mitoaction.org/wp-content/uploads/2024/04/May-INFORM-Lecture-Series.png)The lectures from INFORM, similar to our Expert Series presentations, will be held every month on the Third Monday, until Jun 17, 2024. If you are interested in joining this presentation, click the button below to register! Take a look at the two speakers presenting on Monday, May 20th, David Olsson and Ligia A Kiyuna. ![](https://www.mitoaction.org/wp-content/uploads/2024/01/thumbnail-inform.png)**If you would like to be added to the lecture series mailing list, please send an email to Keith McIntire the INFORM Coordinator: ** [INFORM Lecture Series](https://informnetwork.org/inform-lecture-series/) **Tags:** INFORM, lecture series --- ### [Canadian MitoSocial](https://www.mitoaction.org/mitoaction-events/canadian-mitosocial-2/) **Published:** April 15, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 28, 2024 @ 2:00 pm – 3:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2024/04/Canadian-Mitosocial-428-website-1024x1024.png)You are invited to a CANADIAN Mito Patient and Family Social hosted by MitoAction and Mito Champion Christine Knox: - Meet with other families living with mitochondrial disease - Make connections with others in your area who face similar situations daily [Register](https://mitoaction-org.zoom.us/meeting/register/tZUvfu-uqzkjGNSMw1uxhuk8YujKis5b93BS#/registration) **Tags:** mitosocial **Event Categories:** MitoSocials --- ### [SOCIAL PARA PACIENTES Y FAMILIARES DE MITO EN ESPAÑOL](https://www.mitoaction.org/mitoaction-events/social-para-pacientes-y-familiares-de-mito-en-espanol-2/) **Published:** April 8, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 14, 2024 @ 1:00 pm – 2:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2024/04/April-Spanish-MITO-PATIENT-FAMILY-SOCIAL-1024x1024.png) [Register](https://mitoaction-org.zoom.us/meeting/register/tZApcOGhqDwjHtIoEgmJm19J817dpbnT-4dl) **Tags:** mitosocial **Event Categories:** MitoSocials --- ### [MitoArtisan's Playtime - Course 1](https://www.mitoaction.org/mitoaction-events/mitoartisans-playtime/) **Published:** April 3, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 14, 2024 @ 3:00 pm – 5:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2024/04/MitoArtisans-Platime-Website-graphics-1024x1024.png)Creating and connecting with other artists creates healing. Whether you are young or old, a seasoned artist or just curious, we encourage you to join us on April 14th as we explore art together. Christine Knox, a seasoned illustrator, quilter, artist and MitoChampion, will teach us how to use various drawing materials and share techniques to enhance our drawing skills. This class is a safe place for **all** of our mito patients and families to explore! [Register](https://mitoaction-org.zoom.us/meeting/register/tZIucOytrDojGdNZTmFItp90MDELe73Y3RHZ) **Download the Course 1 Supply List, Description, and Outline Sketch to prepare for this event!** [Course\_ Snowdrop & Ladybird (1)](https://www.mitoaction.org/wp-content/uploads/2024/04/Course_-Snowdrop-Ladybird-1.pdf)[Download](https://www.mitoaction.org/wp-content/uploads/2024/04/Course_-Snowdrop-Ladybird-1.pdf) *Our MitoArtisan’s Playtime lasts between 1.5-2 hours, but we recognize that everyone’s energy is different in our Mito Community! Please know that we support our participants pacing themselves, breaking as needed, and enjoying this time in a way that is most meaningful to them! Please join us for as long as you are able! All are welcome!* **Event Categories:** MitoArtisan's Playtime --- ### [2024 Matthew Harty Mito Classic](https://www.mitoaction.org/mitoaction-events/2024-matthew-harty-mito-classic/) **Published:** February 26, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 10, 2024 @ 2:15 am – 8:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2024/02/2024-MH-Mito-Classic-FB.png)**Join MitoAction and members of the North Andover community at the North Andover Youth Center for the 11th annual Matthew Harty Mito Classic!** An event that started as a birthday tradition for Jack Pascucci and Mikey Harty back in 2008 has turned into one of our most beloved events here at MitoAction. The Matthew Harty Mito Classic, which was once a birthday party for the boys and their friends, has turned into a community-wide event, bringing in students from the middle school and high school, teachers, as well as volunteers from the town, to have fun and raise money for the Matthew Harty Camper Fund. **Teams will up fast, don’t wait to register!** [Register](https://give.mitoaction.org/event/2024-matthew-harty-mito-classic/e547627) ### Photos from last year’s event ![](https://www.mitoaction.org/wp-content/uploads/2024/03/2023-Mito-Harty-Classic-2-1024x768.webp) ![](https://www.mitoaction.org/wp-content/uploads/2024/03/2023-Mito-Harty-Classic-4-1024x768.webp) ![](https://www.mitoaction.org/wp-content/uploads/2024/03/2023-Mito-Harty-Classic-3-768x1024.webp) ![](https://www.mitoaction.org/wp-content/uploads/2024/03/2023-Mito-Harty-Classic-1-1024x768.webp) **Tags:** event, Matthew Harty camper fund, mito classic --- ### [Expert Series: The Cell Danger Response, Healing, and Mitochondrial Disease](https://www.mitoaction.org/mitoaction-events/expert-series-cell-danger-response/) **Published:** March 8, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 5, 2024 @ 12:00 pm – 1:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2024/03/April-Robert-Naviaux-1024x1024.png)When genetic or environmental conditions threaten normal cell functions, an ancient cellular response is activated that first triggers inflammation, then initiates the cellular defenses and steps needed to repair any injury. This response starts with mitochondria and the cell and is called the cell danger response (CDR). All stressed cells release extracellular ATP (eATP) in proportion to the degree of stress, then return to baseline once that stress is resolved. New research has shown that *acquired hypersensitivity to eATP signaling* (purinergic signaling) can cause many secondary symptoms of mitochondrial disease. New medicines are in development that target ATP-related signaling, improve mitochondrial fatty acid oxidation (FAO), and decrease fatigue, pain, and the risk of depression. Improvements in neurodevelopment, several secondary symptoms of mitochondrial disease, and the core symptoms of complex medical disorders like autism have been found in recent clinical trials. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_p89d3DCvThaeuro3RSKwPQ#/registration) **Tags:** cell danger response, expert series, healing **Event Categories:** Events, Monthly Expert Series --- ### [Expert Series: Embracing Adulthood: Roundtable Discussions on Puberty and Reproductive Health: For FAOD Parents/Caregivers](https://www.mitoaction.org/mitoaction-events/expert-series-embracing-adulthood-roundtable-copy/) **Published:** March 8, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 11, 2024 @ 8:00 pm – 9:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2024/03/March-11-Jessica-Gold-1024x1024.png)For many young people, puberty and reproductive health are important milestones in emerging adulthood. Yet, clinicians lack information on these topics for people with FAODs, which impacts their ability to provide guidance. Dr. Jessica Gold, a medical geneticist trained in pediatrics and internal medicine, will lead us in a roundtable discussion about reproductive health in FAODs. She will ask questions about your child’s experience with puberty, birth control, and pregnancy, including how you learned about reproductive health in FAODs and what support you would want to receive from your metabolic doctor. The information from this discussion will be used to design education for healthcare providers on puberty, reproductive health, and FAODs. In order to best learn from your answers, this session will be recorded, but will NOT be published for public access. If you would like to participate in this conversation, but would prefer a one-on-one discussion, please contact the investigator, Jessica Gold, by email at . [Register](https://mitoaction-org.zoom.us/meeting/register/tZ0sc-uurDMtGN2hT-9bnpJXe2lCXasM8XFr#/registration) **Tags:** adulthood, expert series, faod, roundtable discussion **Event Categories:** Events --- ### [INFORM Lecture Series](https://www.mitoaction.org/mitoaction-events/inform-lecture-series-march/) **Published:** March 8, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 18, 2024 @ 10:00 am – 11:00 am ![](https://www.mitoaction.org/wp-content/uploads/2024/03/March-INFORM-Lecture-Series.png)The lectures from INFORM, similar to our Expert Series presentations, will be held every month on the Third Monday, until Jun 17, 2024. If you are interested in joining this presentation, click the button below to register! Take a look at the two speakers presenting on Monday, March 18th, Yudong Wang and Keaton Solo. ![](https://www.mitoaction.org/wp-content/uploads/2024/01/thumbnail-inform.png)**If you would like to be added to the lecture series mailing list, please send an email to Keith McIntire the INFORM Coordinator: ** [INFORM Lecture Series](https://informnetwork.org/inform-lecture-series/) **Tags:** INFORM, lecture series --- ### [Expert Series: Embracing Adulthood: Roundtable Discussions on Puberty and Reproductive Health: For FAODs 18+](https://www.mitoaction.org/mitoaction-events/expert-series-embracing-adulthood-roundtable/) **Published:** March 3, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 4, 2024 @ 8:00 pm – 9:00 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2024/03/March-4-Jessica-Gold-1024x1024.png)For many young people, puberty and reproductive health are important milestones in emerging adulthood. Yet, clinicians lack information on these topics for people with FAODs, which impacts their ability to provide guidance. Dr. Jessica Gold, a medical geneticist trained in pediatrics and internal medicine, will lead us in a roundtable discussion about reproductive health in FAODs. She will ask questions about your experiences with puberty, birth control, and pregnancy, including how you learned about reproductive health in FAODs and what support you would want to receive from your metabolic doctor. The information from this discussion will be used to design education for healthcare providers on puberty, reproductive health, and FAODs. In order to best learn from your answers, this session will be recorded but will NOT be published for public access. If you would like to participate in this conversation but would prefer a one-on-one discussion, please contact the investigator, Jessica Gold, by email at . [Register](https://mitoaction-org.zoom.us/meeting/register/tZEuce2srD8vHtMT7rBO930_oDiKW1nQuXlS) **Tags:** adulthood, expert series, faod, roundtable discussion **Event Categories:** Events --- ### [Canadian MitoSocial](https://www.mitoaction.org/mitoaction-events/canadian-mitosocial/) **Published:** February 14, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 17, 2024 @ 2:00 pm – 3:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2024/02/Canadian-Mitosocial-website2-1024x1024.png)You are invited to a CANADIAN Mito Patient and Family Social hosted by MitoAction and Mito Champion Christine Knox: - Meet with other families living with mitochondrial disease - Make connections with others in your area who face similar situations daily [Register](https://mitoaction-org.zoom.us/meeting/register/tZ0lfuirqjIvEtO-Ips6dJlkzrJtpGV6dXUa) **Tags:** mitosocial **Event Categories:** MitoSocials --- ### [World Rare Disease Day](https://www.mitoaction.org/mitoaction-events/world-rare-disease-day-jeans-for-genes/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 29, 2024 All day ![](https://www.mitoaction.org/wp-content/uploads/2024/02/Rare-Disease-Day.png) [Learn More!](https://www.rarediseaseday.org/) **Event Categories:** Holiday --- ### [Expert Series: FAOD For Beginners](https://www.mitoaction.org/mitoaction-events/expert-series-mito-immune-cell-function-copy-copy/) **Published:** February 23, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 6, 2024 @ 7:00 pm – 8:00 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2024/02/March-6-Arnold-1024x1024.png)This session will review how energy is produced and used in your body, and how all of the different FAOD disorders affect a patient and their metabolism. If you are new to the FAOD world and you are trying to have a better understanding as to what your/your child’s diagnosis means, come to this very important presentation! [Register](https://mitoaction-org.zoom.us/j/83774156891?pwd=j8bU0Of4VO5mbP7KMx7MHYnHQPfhfC.1) **Tags:** beginners, diagnosis, expert series, faod, metabolism **Event Categories:** Events, FAOD Monthly Expert Series, Monthly Expert Series --- ### [INFORM Lecture Series](https://www.mitoaction.org/mitoaction-events/inform-lecture-series-copy/) **Published:** February 16, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 19, 2024 @ 10:00 am – 11:00 am ![](https://www.mitoaction.org/wp-content/uploads/2024/02/February-INFORM-Lecture-Series.png)The lectures from INFORM, similar to our Expert Series presentations, will be held every month on the Third Monday, until Jun 17, 2024. If you are interested in joining this presentation, click the button below to register! Take a look at the two speakers presenting on Monday, January 15th, Andrea Pereyra and Yudong Wang ![](https://www.mitoaction.org/wp-content/uploads/2024/01/thumbnail-inform.png)**If you would like to be added to the lecture series mailing list, please send an email to Keith McIntire the INFORM Coordinator: ** [INFORM Lecture Series](https://informnetwork.org/inform-lecture-series/) **Tags:** INFORM, lecture series --- ### [Round Table Discussion: Strength and Resistance Training- Core Concepts and Considerations](https://www.mitoaction.org/mitoaction-events/round-table-discussion-strength-and-resistance-training-core-concepts-and-considerations/) **Published:** February 14, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 19, 2024 @ 7:00 pm – 8:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2024/02/Feb-19-Pamela-Tucker-1024x1024.png)Join Dr. Pamela Tucker (DPT, PT) in a round table discussion regarding the benefits of a consistent strength-building program, a review of essential exercises, and education on modifications to popular exercises to reduce the risk of injury. Bring your questions and join the discussion to review how to start progressing your exercises to meet your goals! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEsfuqtrDgsGNwRVUG8WiZ_fB_YwE6pKBCh) **Tags:** exercise, roundtable discussion, strength --- ### [Monthly MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/monthly-mitochampions-meeting-3/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 20, 2024 @ 7:00 pm – 9:00 pm [![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)](https://mitoaction-org.zoom.us/j/89327472755?pwd=lalqoSQW1UWhLSMSC8lajoikoyVyaa.1)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. Interested in becoming a MitoChampion? Email sharry@mitoaction.org ## Related Events - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-21/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-21/) September 16 @ 7:00 pm – 8:00 pm - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-22/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-22/) October 21 @ 7:00 pm – 8:00 pm - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-23/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-23/) November 18 @ 7:00 pm – 8:00 pm **Event Categories:** MitoChampion --- ### [Book Release: Breath Taking by Jessica Fein](https://www.mitoaction.org/mitoaction-events/book-release-breath-taking-by-jessica-fein/) **Published:** February 12, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 7, 2024 All day Breath Taking is a memoir by Jessica Fein, MitoAction Board Member and mother of Dalia Flaggert. Get your copy of Breath Taking now at Barnes & Noble, Amazon, or BookShop.org today! ![](https://www.mitoaction.org/wp-content/uploads/2024/01/Screenshot-2024-01-10-at-9.25.13 AM-714x1024.png)*“At the age of five Jessica Fein’s daughter Dalia was diagnosed with a rare degenerative disease that would claim her life at 17. Before that moment came, and inspired by Dalia’s own insuppressible zest for life, Fein and her family would discover how to live in the present when the future can’t be fixed. In this heartfelt yet clear-eyed memoir, Fein maps both her journey to becoming an adoptive mom and the roller coaster ride of loving and caring for a terminally ill child, persevering when the simple act of taking a breath can become an act of courage. Through it all, she discovers the need to be both relentless advocate and calm presence, to show vulnerability as well as strength, and to allow joy to be louder than sorrow.”* Learn more about the author and order the book at the link below [Breath Taking](https://www.jessicafeinstories.com/) --- ### [Expert Series: Modeling mitochondrial diseases with patient-derived stem cells and brain organoids](https://www.mitoaction.org/mitoaction-events/expert-series-modeling-mitochondrial-disease-patient-derived-stem-cells-brain-organoids/) **Published:** September 21, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 1, 2024 @ 12:00 pm – 1:00 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2024/02/March-1st-Alessandro-Prigione-1024x1024.png)In this talk, Dr. Alessandro Prigione will discuss how stem cells are generated from patients to derive models of the brain (such as neurons and brain organoids). He will further discuss how they use these models to investigate the mechanisms causing mitochondrial diseases and to set up pipelines to screen for drugs to be repositioned for patients with mitochondrial diseases. A specific focus will be on Leigh syndrome. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_whbo0z5HRmSQHqoLWDDPBA) **Tags:** brain, expert series, leigh syndrome, stem cells **Event Categories:** Events, Monthly Expert Series --- ### [Alaska MitoSocial](https://www.mitoaction.org/mitoaction-events/alaska-mitosocial/) **Published:** January 30, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 20, 2024 @ 10:00 pm – 11:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2024/01/Alaska-Mitosocial-website-1024x1024.png)Join us for the Alaska MitoSocial on February 20th. This virtual event will be from 6-7pm ASKT (10-11pm EST). Register for the Zoom below, or email soozi@mitoaction.org for more information and questions! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYvdO6tqDsoHN0VxsU0CDdwIOqGuB0ZG7Px#/registration) **Tags:** Alaska, mito support, mitosocial **Event Categories:** MitoSocials --- ### [SOCIAL PARA PACIENTES Y FAMILIARES DE MITO EN ESPAÑOL](https://www.mitoaction.org/mitoaction-events/social-para-pacientes-y-familiares-de-mito-en-espanol/) **Published:** January 22, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 25, 2024 @ 8:00 pm – 9:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2024/01/Feb-Spanish-MITO-PATIENT-FAMILY-SOCIAL-1024x1024.png) [Register](https://mitoaction-org.zoom.us/meeting/register/tZModOispjIrGtw4DsJlleX1yrR6dVYP4htt) **Tags:** mitosocial **Event Categories:** MitoSocials --- ### [Sandra K. Russell Derby Day Benefit for Mito](https://www.mitoaction.org/mitoaction-events/skr-derby-day/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 4, 2024 @ 5:00 pm – 9:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2024/01/DD24-Social-media-Save-the-Date-1024x1024.png)Mark your calendars and plan to join MitoAction for the hottest Derby Day event in Boston! Big hats, bow ties, incredible silent and live auction items, signature mint juleps – we’ll have it all! The annual Sandra K. Russell Derby Day Benefit for Mito is held in honor of Sandra Russell, who lost her battle to mitochondrial disease in 2008. Sandra was the wife of MitoAction Board Member, Gordon Russell, and mother of Derby Day Committee Members Jonathan Russell, Buck Russell and his wife Rebecca Russell. To date, Derby Day has raised over $1.6 million towards improving the lives of patients and families suffering from mitochondrial disease. Because of the generous support of our Derby Day sponsors, volunteers, and attendees, MitoAction continues to provide vital support to those who courageously face the day to day challenges of this devastating rare disease. [Get Tickets & Donate!](https://give.mitoaction.org/event/2024-derby-day/e502257) --- ### [Monthly MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/monthly-mitochampions-meeting/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 17, 2024 @ 7:00 pm – 9:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. Interested in becoming a MitoChampion? Email sharry@mitoaction.org ## Related Events - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-21/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-21/) September 16 @ 7:00 pm – 8:00 pm - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-22/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-22/) October 21 @ 7:00 pm – 8:00 pm - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-23/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-23/) November 18 @ 7:00 pm – 8:00 pm **Event Categories:** MitoChampion --- ### [Monthly MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/monthly-mitochampions-meeting-12/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 18, 2024 @ 7:00 pm – 9:00 pm [![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)](https://mitoaction-org.zoom.us/j/89327472755?pwd=lalqoSQW1UWhLSMSC8lajoikoyVyaa.1)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. Interested in becoming a MitoChampion? Email sharry@mitoaction.org ## Related Events - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-21/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-21/) September 16 @ 7:00 pm – 8:00 pm - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-22/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-22/) October 21 @ 7:00 pm – 8:00 pm - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-23/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-23/) November 18 @ 7:00 pm – 8:00 pm **Event Categories:** MitoChampion --- ### [Monthly MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/monthly-mitochampions-meeting-11/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 20, 2024 @ 7:00 pm – 9:00 pm [![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)](https://mitoaction-org.zoom.us/j/89327472755?pwd=lalqoSQW1UWhLSMSC8lajoikoyVyaa.1)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. Interested in becoming a MitoChampion? Email sharry@mitoaction.org ## Related Events - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-21/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-21/) September 16 @ 7:00 pm – 8:00 pm - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-22/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-22/) October 21 @ 7:00 pm – 8:00 pm - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-23/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-23/) November 18 @ 7:00 pm – 8:00 pm **Event Categories:** MitoChampion --- ### [Monthly MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/monthly-mitochampions-meeting-10/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 16, 2024 @ 7:00 pm – 9:00 pm [![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)](https://mitoaction-org.zoom.us/j/89327472755?pwd=lalqoSQW1UWhLSMSC8lajoikoyVyaa.1)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. Interested in becoming a MitoChampion? Email sharry@mitoaction.org ## Related Events - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-21/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-21/) September 16 @ 7:00 pm – 8:00 pm - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-22/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-22/) October 21 @ 7:00 pm – 8:00 pm - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-23/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-23/) November 18 @ 7:00 pm – 8:00 pm **Event Categories:** MitoChampion --- ### [Monthly MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/monthly-mitochampions-meeting-8/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 21, 2024 @ 7:00 pm – 9:00 pm [![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)](https://mitoaction-org.zoom.us/j/89327472755?pwd=lalqoSQW1UWhLSMSC8lajoikoyVyaa.1)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. Interested in becoming a MitoChampion? Email sharry@mitoaction.org ## Related Events - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-21/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-21/) September 16 @ 7:00 pm – 8:00 pm - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-22/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-22/) October 21 @ 7:00 pm – 8:00 pm - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-23/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-23/) November 18 @ 7:00 pm – 8:00 pm **Event Categories:** MitoChampion --- ### [Monthly MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/monthly-mitochampions-meeting-7/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 17, 2024 @ 7:00 pm – 9:00 pm [![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)](https://mitoaction-org.zoom.us/j/89327472755?pwd=lalqoSQW1UWhLSMSC8lajoikoyVyaa.1)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. Interested in becoming a MitoChampion? Email sharry@mitoaction.org ## Related Events - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-21/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-21/) September 16 @ 7:00 pm – 8:00 pm - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-22/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-22/) October 21 @ 7:00 pm – 8:00 pm - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-23/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-23/) November 18 @ 7:00 pm – 8:00 pm **Event Categories:** MitoChampion --- ### [Monthly MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/monthly-mitochampions-meeting-6/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 19, 2024 @ 7:00 pm – 9:00 pm [![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)](https://mitoaction-org.zoom.us/j/89327472755?pwd=lalqoSQW1UWhLSMSC8lajoikoyVyaa.1)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. Interested in becoming a MitoChampion? Email sharry@mitoaction.org ## Related Events - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-21/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-21/) September 16 @ 7:00 pm – 8:00 pm - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-22/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-22/) October 21 @ 7:00 pm – 8:00 pm - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-23/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-23/) November 18 @ 7:00 pm – 8:00 pm **Event Categories:** MitoChampion --- ### [Monthly MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/monthly-mitochampions-meeting-5/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 15, 2024 @ 7:00 pm – 9:00 pm [![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)](https://mitoaction-org.zoom.us/j/89327472755?pwd=lalqoSQW1UWhLSMSC8lajoikoyVyaa.1)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. Interested in becoming a MitoChampion? Email sharry@mitoaction.org ## Related Events - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-21/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-21/) September 16 @ 7:00 pm – 8:00 pm - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-22/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-22/) October 21 @ 7:00 pm – 8:00 pm - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-23/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-23/) November 18 @ 7:00 pm – 8:00 pm **Event Categories:** MitoChampion --- ### [Monthly MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/monthly-mitochampions-meeting-4/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 17, 2024 @ 7:00 pm – 9:00 pm [![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)](https://mitoaction-org.zoom.us/j/89327472755?pwd=lalqoSQW1UWhLSMSC8lajoikoyVyaa.1)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. Interested in becoming a MitoChampion? Email sharry@mitoaction.org ## Related Events - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-21/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-21/) September 16 @ 7:00 pm – 8:00 pm - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-22/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-22/) October 21 @ 7:00 pm – 8:00 pm - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-23/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-23/) November 18 @ 7:00 pm – 8:00 pm **Event Categories:** MitoChampion --- ### [Monthly MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/monthly-mitochampions-meeting-2/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 21, 2024 @ 7:00 pm – 9:00 pm [![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)](https://mitoaction-org.zoom.us/j/89327472755?pwd=lalqoSQW1UWhLSMSC8lajoikoyVyaa.1)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. Interested in becoming a MitoChampion? Email sharry@mitoaction.org ## Related Events - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-21/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-21/) September 16 @ 7:00 pm – 8:00 pm - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-22/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-22/) October 21 @ 7:00 pm – 8:00 pm - [![MitoChampions Meeting](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-23/) ### [ MitoChampions Meeting ](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-23/) November 18 @ 7:00 pm – 8:00 pm **Event Categories:** MitoChampion --- ### [Expert Series: Leigh syndrome: A factory for making viruses?](https://www.mitoaction.org/mitoaction-events/expert-series-mito-immune-cell-function-copy/) **Published:** January 9, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 2, 2024 @ 12:00 pm – 1:00 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2024/01/February-2-Peter-McGuire-1024x1024.png)Previously, the McGuire group at NIH reported that children with mitochondrial disease in general experience serious infections which may last longer than expected. Cells impacted by mitochondrial disease present a unique environment that may be facilitative for viral replication. This relationship between compromised mitochondrial function and increased viral activity suggests a complex interplay where cellular energy deficits might inadvertently support the viral lifecycle. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_b_ZehXy7Sei23vrWScQWjw#/registration) **Tags:** expert series, primary mitochondrial, virus **Event Categories:** Events, Monthly Expert Series --- ### [2024 Mito Town Meeting](https://www.mitoaction.org/mitoaction-events/2024-mito-town-meeting/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 12, 2024 @ 12:00 pm – 2:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/10/Mito-Town-Meeting-Website-Banner-Template-1-1024x296.png) The annual mito town meeting is our way of kicking off the new year by sharing all that we have in store for the next 12 months! We will hear from organizations and companies around the globe that have special opportunities, programs and projects for patients and families affected by mitochondrial disease. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_BzLYAapaSE6RqWeiLgslXg) **2024 Mito Town Meeting Agenda** [2024-MitoAction-Town-Meeting-Agenda](https://www.mitoaction.org/wp-content/uploads/2023/11/2024-MitoAction-Town-Meeting-Agenda.pdf) **Event Categories:** Monthly Expert Series --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-12/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 5, 2024 @ 6:00 pm – 7:00 pm Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call --- ### [Giving Tuesday](https://www.mitoaction.org/mitoaction-events/giving-tuesday/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 3, 2024 All day **Event Categories:** Holiday --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-11/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 7, 2024 @ 6:00 pm – 7:00 pm Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-10/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 3, 2024 @ 6:00 pm – 7:00 pm Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call --- ### [LHON Awareness Day](https://www.mitoaction.org/mitoaction-events/lhon-awareness-day-2/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 17, 2024 All day **Event Categories:** Awareness Week --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-9/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 5, 2024 @ 6:00 pm – 7:00 pm Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call --- ### [Falmouth Road Race](https://www.mitoaction.org/mitoaction-events/falmouth-road-race/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 18, 2024 All day --- ### [National Non-Profit Day](https://www.mitoaction.org/mitoaction-events/national-non-profit-day/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 17, 2024 All day **Event Categories:** Holiday --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-8/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") August 1, 2024 @ 6:00 pm – 7:00 pm Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call --- ### [FAOD Conference](https://www.mitoaction.org/mitoaction-events/faod-conference/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") July 26, 2024 – July 28, 2024 --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-7/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") June 6, 2024 @ 6:00 pm – 7:00 pm Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-6/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May 2, 2024 @ 6:00 pm – 7:00 pm Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-5/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") April 4, 2024 @ 6:00 pm – 7:00 pm Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-4/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") March 7, 2024 @ 6:00 pm – 7:00 pm Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call --- ### [2024 MHCF Scholarships Opens](https://www.mitoaction.org/mitoaction-events/2024-mhcf-scholarships-opens/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 1, 2024 All day --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-3/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") February 1, 2024 @ 6:00 pm – 7:00 pm Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-2/) **Published:** January 5, 2024 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 4, 2024 @ 6:00 pm – 7:00 pm Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) **Event Categories:** CPEO & Me Support Call --- ### [INFORM Lecture Series](https://www.mitoaction.org/mitoaction-events/inform-lecture-series/) **Published:** January 4, 2024 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 15, 2024 @ 10:00 am – 11:00 am The lectures from INFORM, similar to our Expert Series presentations, will be held every month on the Third Monday, until Jun 17, 2024. If you are interested in joining this presentation, click the button below to register! Take a look at the two speakers presenting on Monday, January 15th, Andrea Pereyra and Yudong Wang ![](https://www.mitoaction.org/wp-content/uploads/2024/01/Screenshot-2024-01-04-at-4.28.41 PM.png)**Andrea Pereyra, MD, PhD** (last name is pronounced *“Peh-rei-rah”*) *Postdoctoral Scholar at East Carolina Diabetes and Obesity Institute* *Board of Directors at National Postdoctoral Association* *Brody School of Medicine* *East Carolina University* Dr. Andrea Pereyra is a Postdoctoral Scholar at the East Carolina Diabetes and Obesity Institute and the Brody School of Medicine at East Carolina University, working at the intersection of lipid metabolism and muscle physiology. She earned M.D. and Ph.D. degrees from the National University of La Plata School of Medicine in Argentina. Currently, her work focuses on understanding how defects in mitochondrial lipid catabolism drive alterations in skeletal and cardiac muscle contractile apparatus beyond energy supply and ATP production. Additionally, Dr. Pereyra serves on the Board of Directors at the National Postdoctoral Association and regularly contributes to the American Society of Biochemistry and Molecular Biology as a scientific writer. **Her Presentation:** ***Muscle contraction-related proteome and calcium homeostasis are disrupted in CPT2-deficient mice*** --- ![](https://www.mitoaction.org/wp-content/uploads/2024/01/Screenshot-2024-01-04-at-4.29.42 PM.png)**Yudong Wang, PhD** Dr. Yudong Wang is a research assistant professor in the Department of Pediatrics at the University of Pittsburgh School of Medicine. His groundbreaking work demonstrated the physical and functional relationship between fatty acid oxidation and electron transfer chain supercomplexes. He earned his Ph.D. degree from the Agricultural University of China and has been a member of the Division of Genetic and genomic medicine for 15 years. Dr. Wang’s research continues to focus on characterization of the molecular architecture of mitochondrial metabolism, with an emphasis on the broad group of mitochondrial NADH dependent dehydrogenases and their interaction with ETC complex I. He currently is studying the branched chain keto acid dehydrogenase and pyruvate dehydrogenase complex. *University of Pittsburgh School of Medicine, Pittsburgh, PA,* *University of Pittsburgh Graduate School of Public Health, Pittsburgh, PA, USA* **His Presentation:** ***Pyruvate dehydrogenase interacts with electron transfer chain supercomplexes*** ![](https://www.mitoaction.org/wp-content/uploads/2024/01/thumbnail-inform.png)For more information from INFORM, visit [Join the Zoom Lecture](https://pitt.zoom.us/j/91484897672) **Tags:** INFORM, lecture series --- ### [Expert Series: Stride Study for PMM Patients](https://www.mitoaction.org/mitoaction-events/expert-series-reneo-stride-update/) **Published:** December 20, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") January 4, 2024 @ 12:00 pm – 1:00 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2023/12/January-4-Alex-Dorenbaum-1024x1024.png)Join MitoAction and Dr. Alex Dorenbaum, Chief Medical Officer at Reneo Pharmaceuticals, as they discuss the Stride Study results for mavodelpar in Primary Mitochondria Myopathy. This will be a roundtable discussion format so patients and clinicians can ask their questions. [Register](https://mitoaction-org.zoom.us/meeting/register/tZAuce-qqTMqHd0J32TD4SmHpjnB9GE5fhqF) **Tags:** expert series, stem cells **Event Categories:** Events, Monthly Expert Series --- ### [Hanukkah](https://www.mitoaction.org/mitoaction-events/happy-hanukkah/) **Published:** October 10, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 7, 2023 @ 12:00 am – December 14, 2023 @ 11:59 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/10/Hanukkah-1024x1024.png)From all of us at MitoAction, we wish you a Happy Hanukkah, filled with peace, light, and love! May your candles burn bright this season. **Tags:** Hanukkah, Holiday **Event Categories:** Holiday --- ### [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me/2023-12-07/) **Published:** July 31, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2023/08/CPEO-Me-Zoom-Newsletter-Banner.png) October 5, 2023 @ 6:00 pm – 7:00 pm Join us for “CPEO and Me” every 1st Thursday of the the month at 6pm (EST)! This is a special place carved out for individuals impacted by CPEO to share about their experiences! [Register](https://mitoaction-org.zoom.us/meeting/register/tZYpc-ivrj4uGtNligQirVrxKGnfmXuQvp74) --- ### [Expert Series: Understanding Upcoming MCADD Trials](https://www.mitoaction.org/mitoaction-events/expert-series-modeling-mitochondrial-disease-patient-derived-stem-cells-brain-organoids-copy/) **Published:** November 7, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 26, 2023 @ 12:00 pm – 1:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2023/11/October-26-Dr-Arnold-1024x1024.png)There are two new MCADD trials that have started in recent months. One explores the use Dojolvi (triheptanoin) and the second the use of phenylbutyrate with MCADD patients. Join MitoAction as Dr. Arnold discusses the science behind both studies, why these substances are being evaluated, and what these studies will look like. If you have any questions about the trials or about participating in either trial, we encourage you to come, learn, and bring your questions! **Tags:** brain, expert series, leigh syndrome, stem cells **Event Categories:** Events, Monthly Expert Series --- ### [Maine Virtual MitoSocial](https://www.mitoaction.org/mitoaction-events/maine-virtual-mitosocial/) **Published:** November 3, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 14, 2023 @ 12:15 pm – 1:00 pm If you live in Maine, join us for a virtual MitoSocial on Tuesday, November 14th to connect with others in your local community who share your story with mitochondrial disease. No matter where you are on your journey, you are welcome! Build you local circle of support! ![](https://www.mitoaction.org/wp-content/uploads/2023/11/ME-Mitosocial-graphic-1024x1024.png)[REGISTER](https://mitoaction-org.zoom.us/meeting/register/tZ0qde6prDsqH9Uq30iFSBp24_kLfJMbDGQb) **Tags:** local support, Maine, mito community, mito support, mitosocial **Event Categories:** MitoSocials --- ### [SOCIAL PARA PACIENTES Y FAMILIARES DE MITO EN ESPAÑOL](https://www.mitoaction.org/mitoaction-events/virtual-mitosocial-espanol/) **Published:** October 12, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 29, 2023 @ 12:00 pm – 1:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/10/Spanish-MITO-PATIENT-FAMILY-SOCIAL-1024x1024.png)[Register](https://mitoaction-org.zoom.us/meeting/register/tZ0lcuuqrTIpHtyjNM4P3G-m0KMG11qgfksj) **Tags:** mito community, mito support, mitosocial, spanish **Event Categories:** MitoSocials --- ### [Pennsylvania Virtual MitoSocial](https://www.mitoaction.org/mitoaction-events/pennsylvania-virtual-mitosocial/) **Published:** October 25, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 8, 2023 @ 7:00 pm – 8:00 pm If you live in Pennsylvania, join us for a virtual MitoSocial on Wednesday, November 8th to connect with others in your local community who share your story with mitochondrial disease. No matter where you are on your journey, you are welcome! Build you local circle of support! ![](https://www.mitoaction.org/wp-content/uploads/2023/10/PA-Mitosocial-graphic-1024x1024.png)[REGISTER](https://mitoaction-org.zoom.us/meeting/register/tZwud-6sqTIiGdDGuypRuRIobU43hTPS8cjE) **Tags:** local support, mito community, mito support, mitosocial, Pennsylvania **Event Categories:** MitoSocials --- ### [Open Mito Mic & Art Show](https://www.mitoaction.org/mitoaction-events/open-mito-mic-art-show/) **Published:** October 11, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 5, 2023 @ 6:00 pm – 7:00 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/10/Open-Mito-Mic-and-Art-Show-1-1024x1024.png)Beauty and healing occur when we come together and share bits of our journey! Join MitoAction’s artists as they share pieces of their journey for our first virtual art show! There will be poetry, paintings, quilting and more! This will be a space to process our Mito Journey in a different way, so please come out to support family and friends in your Mito Community! [Register!](https://mitoaction-org.zoom.us/meeting/register/tZ0kceytpj8vG9fAM5YG2T6imK16O-2XDwDd) **Tags:** open mic **Event Categories:** Events --- ### [Energy Walk - Rochester](https://www.mitoaction.org/mitoaction-events/energy-walk-rochester-2/) **Published:** September 8, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 15, 2023 @ 1:30 pm – 5:00 pm EDT **Join us for the 5th annual Rochester, NY Energy Walk!** ![](https://www.mitoaction.org/wp-content/uploads/2022/05/DkRJBwR-300x300.jpg) Join our hosts, Stacy, her cousins Kate and Erin, and the Bellaire Family as they work together to help spread awareness and raise funds to support the MitoAction community. Stacy’s dad, Todd and Kate and Erin’s dad, Jesi both lost their battles with mitochondrial disease. Stacy’s ten year old neighbor, Katelin is also affected by this devastating disease. They ask that you join in and help support families like theirs, who face the daily challenges of life with this rare disease. This family event offers support, friendship, and fun for everyone! The day’s highlights include: - Food & Refreshments - Unique raffle items - Kids’ arts & crafts - Team & individual awards - And so much more! Your participation makes a huge difference in the lives of patients and families who rely on us. Help to show our community how strong and powerful we can be together. [Register](https://give.mitoaction.org/event/2023-mitoaction-energy-walk-rochester/e491551) ## Related Events - [![Mitochondrial Disease Awareness Week](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochondrial-disease-awareness-week-3/) ### [ Mitochondrial Disease Awareness Week ](https://www.mitoaction.org/mitoaction-events/mitochondrial-disease-awareness-week-3/) September 14 @ 12:00 am – September 20 @ 11:59 pm - [![LHON Awareness Day 2026](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/lhon-awareness-day-2026/) ### [ LHON Awareness Day 2026 ](https://www.mitoaction.org/mitoaction-events/lhon-awareness-day-2026/) September 19 @ 12:00 am – 11:59 pm **Event Categories:** Energy Walk, Events --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-25-copy/) **Published:** October 12, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 1, 2023 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) ## Related Events - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) September 25 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) October 2 @ 12:00 pm – 1:00 pm **Tags:** mito support **Event Categories:** Weekly Support Calls --- ### [Thanksgiving](https://www.mitoaction.org/mitoaction-events/thanksgiving/) **Published:** October 10, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 23, 2023 All day ![](https://www.mitoaction.org/wp-content/uploads/2023/10/Thanksgiving-1024x1024.png)MitoAction wishes to extend our heartfelt thanks to our amazing mitochondrial disease community. It is an honor that you have entrusted us to walk with you on this journey, and we are forever grateful for every member of this community. **Tags:** Holiday, Thanksgiving **Event Categories:** Holiday --- ### [Christmas Day](https://www.mitoaction.org/mitoaction-events/christmas-day/) **Published:** October 11, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 25, 2023 All day ![](https://www.mitoaction.org/wp-content/uploads/2023/10/Christmas-1-1024x1024.png)From all of us at MitoAction, we want to wish you a Merry Christmas filled with peace, love and joy! We hope you all have a happy and healthy holiday season. **Tags:** Christmas, Holiday --- ### [Expert Series: Ultra-Rare Mitochondrial Diseases: Development Challenges and Opportunities](https://www.mitoaction.org/mitoaction-events/expert-series-ultra-rare-mitochondrial-disease-challenges-opportunities/) **Published:** October 3, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 6, 2023 @ 12:00 pm – 1:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2023/10/Reenie-McCarthy-1024x1024.png)Join CEO of Stealth Biotherapeutics Reenie McCarthy, and special guest Shelley Bowen, Director of Family Services and Advocacy for the Barth Syndrome Foundation, as they discuss the health equity challenges faced within the ultra-rare disease space, particularly for mitochondrial targeted therapies, and the potential solutions to overcome these obstacles in therapy development. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_DM2F1V41RaqjscgzxowERg) **Tags:** barth syndrome, expert series, mitochrondrial-targeted therapies, opportunities, potential solutions, ultra-rare **Event Categories:** Events, Monthly Expert Series --- ### [Massachusetts Virtual MitoSocial](https://www.mitoaction.org/mitoaction-events/massachusetts-virtual-mitosocial/) **Published:** October 4, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 17, 2023 @ 7:00 pm – 8:00 pm If you live in Massachusetts, join us for a virtual MitoSocial on Tuesday, October 17th to connect with others in your local community who share your story with mitochondrial disease. No matter where you are on your journey, you are welcome! Build you local circle of support! ![](https://www.mitoaction.org/wp-content/uploads/2023/10/Mass-MITO-PATIENT-FAMILY-SOCIAL-1-1024x1024.png)[REGISTER](https://mitoaction-org.zoom.us/meeting/register/tZAkdOCvrzMpHt0KOg4C9nTPlsiXQZpj8ePS#/registration) **Tags:** massachusetts, mito community, mito support, mitosocial **Event Categories:** MitoSocials --- ### [Expert Series: LCHADD Retinopathy Update: Moving Toward a Treatment](https://www.mitoaction.org/mitoaction-events/expert-series-mito-lchadd-retinopathy-update/) **Published:** September 11, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 1, 2023 @ 7:00 pm – 8:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2023/10/November-1-Melanie-Gillingham-1024x1024.png)Having a better understanding of what things are associated with LCHADD retinopathy can provide insight towards developing treatment. During this presentation, Dr. Gillingham will provide an update on the current results of a natural history study of 40 patients with LCHADD. She will also discuss what factors are associated with retinal structure and function, and how blood biomarkers or genetics might be related. Lastly, Dr. Gillingham will update our FAOD community about her lab’s efforts to treat retinopathy in an LCHADD mouse. [Register](https://mitoaction-org.zoom.us/meeting/register/tZMtfu-tpzwjH90GfnZFmexL8Oy6q_JDwqOW) **Tags:** expert series, LCHADD, LCHADD Retinopathy, treatment **Event Categories:** Events, Monthly Expert Series --- ### [LHON Awareness Day](https://www.mitoaction.org/mitoaction-events/lhon-awareness-day/) **Published:** August 11, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 19, 2023 @ 11:00 am – 1:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2023/08/IMP-LHON-Awareness-Logos-1024x766.png)Meet Associate Professor Wong who will tell us about his exciting research into LHON, and how it could change the lives of many. What is rehabilitation after vision loss? Hear from a rehabilitation expert, Krister Inde about what is possible. Join in the discussion and ask questions of our experts. The event sponsored by IMP is open to everyone interested in LHON, including patients, caregivers, researchers and clinicians. For questions or more information email . [Register](https://docs.google.com/forms/d/e/1FAIpQLSeHgVXM9jjdLwdoR03IHC8cftYjDStoQuif1BUv_6T8hrnC9A/viewform) --- ### [Expert Series: Ceramides: The Unmasked Drivers of VLCADD-Induced Heart Failure](https://www.mitoaction.org/mitoaction-events/expert-series-mito-ceramides-vlcadd-induced-heart-failure/) **Published:** September 14, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 6, 2023 @ 7:00 pm – 8:00 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2023/09/December-6-1-1024x1024.png)Despite advances in newborn screening and treatment of fatty acid oxidation disorders, patients with very-long-chain acyl-CoA dehydrogenase deficiency (VLCADD) continue to suffer from heart failure. Marie Norris will discuss her preliminary data which suggests that lipotoxicity, largely mediated by the accumulation of ceramides, is a major contributor to VLCADD-induced heart failure. Ms. Norris will discuss the role of ceramides, while addressing the mounting evidence that elevated ceramides contribute to heart failure in humans/rodents and that cardiac function improves with ceramide depletion. [Register](https://mitoaction-org.zoom.us/meeting/register/tZYocOqprT0jGNTGyJYz1OKnJ7bfhwACYnE4) **Tags:** ceramides, expert series, faod, heart failure, VLCADD **Event Categories:** Events, Monthly Expert Series --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-13/) **Published:** August 2, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 29, 2023 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) ## Related Events - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) September 25 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) October 2 @ 12:00 pm – 1:00 pm **Event Categories:** Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-14/) **Published:** August 2, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 22, 2023 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) ## Related Events - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) September 25 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) October 2 @ 12:00 pm – 1:00 pm **Event Categories:** Weekly Support Calls --- ### [MitoChampions Monthly Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-monthly-meeting-copy/) **Published:** August 11, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 20, 2023 @ 7:00 pm – 9:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Tags:** mito, mitochampions, mitosupport **Event Categories:** MitoChampion --- ### [2023 MitoAction Energy Walk & 5k - Syracuse](https://www.mitoaction.org/mitoaction-events/2023-mitoaction-energy-walk-5k-syracuse/) **Published:** June 27, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 17, 2023 @ 9:00 am – 1:00 pm EDT [Learn More or Register Today](https://give.mitoaction.org/event/2023-mitoaction-energy-walk-and-5k-syracuse/e491556) **Event Categories:** Energy Walk, Events --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-11/) **Published:** August 2, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 15, 2023 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) ## Related Events - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) September 25 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) October 2 @ 12:00 pm – 1:00 pm **Event Categories:** Weekly Support Calls --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-support-call-6/) **Published:** August 2, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 14, 2023 @ 8:15 pm – 9:30 pm EDT Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![FAOD Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/faod-support-call-10/) ### [ FAOD Support Call ](https://www.mitoaction.org/mitoaction-events/faod-support-call-10/) October 8 @ 8:15 pm – 9:15 pm - [![FAOD Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/faod-support-call-11/) ### [ FAOD Support Call ](https://www.mitoaction.org/mitoaction-events/faod-support-call-11/) November 12 @ 8:15 pm – 9:15 pm - [![FAOD Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/faod-support-call-12/) ### [ FAOD Support Call ](https://www.mitoaction.org/mitoaction-events/faod-support-call-12/) December 10 @ 8:15 pm – 9:15 pm **Event Categories:** FAOD Monthly Support Call --- ### [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-support-call-7-copy/) **Published:** August 11, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 28, 2023 @ 1:00 pm – 2:30 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2023/08/FAOD-Support-Call-Template-2.png)Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 4th Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tJYkcu-hqz8iHddEQmJP2lEz89R2h-fT9LtN) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [Energy Walk - Boston](https://www.mitoaction.org/mitoaction-events/energy-walk-boston/) **Published:** November 29, 2022 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 24, 2023 @ 5:00 pm – 9:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2023/07/Boston-Website-Thumbnail-1-300x251.png) **Join us for the 19th annual Energy Walk in Boston!** Gather your team and get ready to go for a walk all together throughout the zoo while raising awareness for mitochondrial disease! Whether you walk as an individual, create a team or volunteer, you’re making a difference in the lives of patients and families who rely on us. Your fundraising helps MitoAction change the future of health for every mito patient, here and around the world. This family event offers support, friendship, and fun for everyone! The day’s highlights include a walk around the Franklin Park Zoo, tons of activities including crafts, live entertainment, music, our legendary raffle, and more! Franklin Park Zoo is wheelchair friendly. Register, fundraise and **JOIN US**! [Register](https://give.mitoaction.org/event/2023-mitoaction-energy-walk-boston/e500648) ### [Franklin Park Zoo](https://www.mitoaction.org/venue/franklin-park-zoo/ "Franklin Park Zoo") 1 Franklin Park Rd. Boston, Massachusetts 02121 United States ## Related Events - [![Mitochondrial Disease Awareness Week](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochondrial-disease-awareness-week-3/) ### [ Mitochondrial Disease Awareness Week ](https://www.mitoaction.org/mitoaction-events/mitochondrial-disease-awareness-week-3/) September 14 @ 12:00 am – September 20 @ 11:59 pm - [![LHON Awareness Day 2026](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/lhon-awareness-day-2026/) ### [ LHON Awareness Day 2026 ](https://www.mitoaction.org/mitoaction-events/lhon-awareness-day-2026/) September 19 @ 12:00 am – 11:59 pm **Event Categories:** Energy Walk, Events --- ### [Awareness Week](https://www.mitoaction.org/mitoaction-events/awareness-week-2/) **Published:** June 28, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 17, 2023 @ 8:00 am – September 24, 2023 @ 5:00 pm EDT **Tags:** Awareness Week **Event Categories:** Events --- ### [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-afternoon-support-call/) **Published:** August 11, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 26, 2023 @ 1:00 pm – 2:30 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2023/08/FAOD-Support-Call-Template-2.png)Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 4th Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tJYkcu-hqz8iHddEQmJP2lEz89R2h-fT9LtN) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-16/) **Published:** August 2, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 20, 2023 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) ## Related Events - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) September 25 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) October 2 @ 12:00 pm – 1:00 pm **Event Categories:** Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-17/) **Published:** August 2, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 27, 2023 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) ## Related Events - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) September 25 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) October 2 @ 12:00 pm – 1:00 pm **Event Categories:** Weekly Support Calls --- ### [MitoChampions Monthly Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-monthly-meeting-2/) **Published:** August 11, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 18, 2023 @ 7:00 pm – 9:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Tags:** mito, mitochampions, mitosupport **Event Categories:** MitoChampion --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-15/) **Published:** August 2, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 13, 2023 @ 12:00 pm – 1:00 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) ## Related Events - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) September 25 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) October 2 @ 12:00 pm – 1:00 pm **Event Categories:** Weekly Support Calls --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-support-call-5/) **Published:** August 2, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 12, 2023 @ 8:15 pm – 9:30 pm EDT Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-10-copy/) **Published:** August 2, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 6, 2023 @ 1:15 pm – 2:15 pm EDT Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) ## Related Events - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) September 25 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) October 2 @ 12:00 pm – 1:00 pm **Tags:** expert series, mito support **Event Categories:** Weekly Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network/) **Published:** August 11, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 10, 2023 @ 8:30 pm – 9:30 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [10th Annual Matthew Harty Golf Tournament](https://www.mitoaction.org/mitoaction-events/10th-annual-matthew-harty-golf-tournament/) **Published:** September 7, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") October 2, 2023 @ 8:30 am – 12:00 pm EDT Join us on Monday, October 2nd for the 10th Annual Matthew Harty Golf Tournament. Shotgun Start at 8:30am! ![](https://www.mitoaction.org/wp-content/uploads/2022/11/Matthew20Harty20Camper20Fund20Golf20Tournament-1024x1024.png) The Matthew Harty Golf Tournament plays an essential role in the financial support of several impactful programs MitoAction provides, the Matthew Harty Camper Fund, the Matthew Harty Scholarship Fund and Dalia’s Wish. Thanks to the generosity of our donors, we have had the privilege of sending almost **400 children** with mitochondrial disease to summer camp and have awarded more than **90 scholarships** to college students battling various mito diseases. In addition, we recognize and deeply appreciate our local community that supported Matthew. In that spirit, MitoAction has awarded **23 scholarships** to North Andover High School seniors. These students have proven their dedication to helping children with special needs through volunteerism or their chosen college major. In it’s tenth year, this incredible event would not be possible without the generous support of individuals like you. To date, the golf tournament has raised over $125K towards improving the lives of families who face the daily challenges of mitochondrial disease. We are extremely grateful and honored by the support of our community, volunteers and participants who each year make this important day a tremendous success. [Register](https://give.mitoaction.org/event/2023-matthew-harty-camper-fund-golf-tournament/e500924) ### [North Andover Country Club](https://www.mitoaction.org/venue/north-andover-country-club/ "North Andover Country Club") 500 Great Pond Rd. North Andover, Massachusetts United States ## Related Events - [![Mitochondrial Disease Awareness Week](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mitochondrial-disease-awareness-week-3/) ### [ Mitochondrial Disease Awareness Week ](https://www.mitoaction.org/mitoaction-events/mitochondrial-disease-awareness-week-3/) September 14 @ 12:00 am – September 20 @ 11:59 pm - [![LHON Awareness Day 2026](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/lhon-awareness-day-2026/) ### [ LHON Awareness Day 2026 ](https://www.mitoaction.org/mitoaction-events/lhon-awareness-day-2026/) September 19 @ 12:00 am – 11:59 pm **Tags:** Matthew Harty camper fund, mito events **Event Categories:** Events, Matthew Harty Golf Tournament --- ### [Expert Series: Immune Cell Function in Mitochondrial Disease](https://www.mitoaction.org/mitoaction-events/expert-series-mito-immune-cell-function/) **Published:** August 30, 2023 **Author:** Emily Grandahl **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 3, 2023 @ 12:00 pm – 1:00 pm EDT ![](https://www.mitoaction.org/wp-content/uploads/2023/08/November-3-Melissa-Walker-1024x1024.png)Immune dysfunction is increasingly appreciated in mitochondrial disorders. Join Melissa Walker to review the small number of known immune manifestations of specific primary mitochondrial disorders as well as emerging studies on non-specific immune dysfunction in mitochondrial disease more broadly. [Register](https://mitoaction-org.zoom.us/webinar/register/WN_Jot1XPUeQ96slBsVdNsa7Q) **Tags:** expert series, immune cell function, immune dysfunction, primary mitochondrial **Event Categories:** Events, Monthly Expert Series --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-2/) **Published:** August 11, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 14, 2023 @ 8:30 pm – 9:30 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [MitoChampions Monthly Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-monthly-meeting-3/) **Published:** August 11, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 15, 2023 @ 7:00 pm – 9:00 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Tags:** mito, mitochampions, mitosupport **Event Categories:** MitoChampion --- ### [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-afternoon-support-call-2/) **Published:** August 11, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 16, 2023 @ 1:00 pm – 2:30 pm EST DUE TO THE HOLIDAY THIS MONTH’S CALL WILL BE ON NOVEMBER 16TH Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 4th Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tJYkcu-hqz8iHddEQmJP2lEz89R2h-fT9LtN) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-afternoon-support-call-3/) **Published:** August 11, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 21, 2023 @ 1:00 pm – 2:30 pm EST DUE TO THE HOLIDAY THIS MONTH’S CALL WILL BE HELD ON DECEMBER 21ST. Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 4th Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tJYkcu-hqz8iHddEQmJP2lEz89R2h-fT9LtN) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-3/) **Published:** August 11, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 12, 2023 @ 8:30 pm – 9:30 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-support-call-3/) **Published:** August 2, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 14, 2023 @ 8:15 pm – 9:30 pm EST Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [MitoChampions Monthly Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-monthly-meeting-4/) **Published:** August 11, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 20, 2023 @ 7:00 pm – 9:00 pm EST ![](https://www.mitoaction.org/wp-content/uploads/2023/08/MitoChampions.png)Are you interested in becoming more involved with MitoAction and advocacy efforts for the community? Become a MitoChampion and engage in ways that are most meaningful to you. Our MitoChampion meetings are a collective space to bring volunteers together to work on various projects related to advocacy, education, peer-to-peer support, fundraising and much more. To become a MitoChampion or to learn more, email . **Tags:** mito, mitochampions, mitosupport **Event Categories:** MitoChampion --- ### [TK2d Awareness Day](https://www.mitoaction.org/mitoaction-events/tk2d-awareness-day/) **Published:** August 11, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 12, 2023 All day ![](https://www.mitoaction.org/wp-content/uploads/2023/08/IMP-TK2D-Awareness-1024x766.png)Join IMP and MitoAction as we focus on raising awareness for TK2d. Throughout the day, we will share insights into what life is like living with TK2d and the challenges that families and individuals face each day. For questions or more information email . **Tags:** awareness, mito, tk2d **Event Categories:** Awareness Week --- ### [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-support-call-4/) **Published:** August 2, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 9, 2023 @ 8:15 pm – 9:30 pm Join MitoAction and call host, FAOD Mom, Stephanie Harry on the 2nd Thursday of each month for a support call for families affected by fatty acid oxidation disorders. This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAODs. [Register](https://mitoaction-org.zoom.us/meeting/register/tZUuf-mvqz8rHdBMhpcV3E9k6Kx1pb7xL4XJ) ## Related Events - [![Our Space: A space for young adults with Mito and FAODs to connect and network](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) ### [ Our Space: A space for young adults with Mito and FAODs to connect and network ](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-with-mito-and-faods-to-connect-and-network-33/) September 15 @ 8:30 pm – 9:30 pm - [![CPEO & Me](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) ### [ CPEO & Me ](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) September 17 @ 6:00 pm – 7:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm **Event Categories:** FAOD Monthly Support Call, Support Calls --- ### [Our Space: A space for young adults to connect and network with Mito and FAODs](https://www.mitoaction.org/mitoaction-events/our-space-a-space-for-young-adults-to-connect-and-network-with-mito-and-faods-2/) **Published:** August 11, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 12, 2023 @ 8:30 pm – 9:30 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Our-Space-Wednesday-Social-Media.png)Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! We recognize that being a young adult comes with it’s own set of challenges and MitoAction is committed to ensuring that each member of our young adult community feels supported and part of a larger community. Don’t miss this opportunity to connect with other young adults and share your unique experiences living with mitochondrial disease. [Register](https://mitoaction-org.zoom.us/meeting/register/tZArfuGvrjgpGNfm9noCN9zvEDs0skpQiU1q) **Event Categories:** Our Space, Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-19/) **Published:** August 3, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 11 @ 7:38 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Mens-Support-Call-Template.png)Join us for a support call just for the men of the mitochondrial disease community. Spend an hour talking about challenges, victories and anything else you’d like to discuss. [Register](https://mitoaction-org.zoom.us/meeting/register/tZEtd--gpj8iGNN9IIwCiytBy6urqFiuzt52) ### Details - Date: September 11 - Time: 7:38 pm - Event Categories: [Events](https://www.mitoaction.org/calendar/category/events/), [Men’s Support Call](https://www.mitoaction.org/calendar/category/mens-support-call/) **Event Categories:** Events, Men’s Support Call --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-23-copy/) **Published:** August 2, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 3, 2023 @ 1:15 pm – 2:15 pm ![](https://www.mitoaction.org/wp-content/uploads/2023/08/Weekly-Call-Support-2023-NO-TIME.jpg)Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) ## Related Events - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) September 25 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) October 2 @ 12:00 pm – 1:00 pm **Tags:** mito support **Event Categories:** Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-25/) **Published:** August 2, 2023 **Author:** Kira Mann **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 8, 2023 @ 1:15 pm – 2:15 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) ## Related Events - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) September 25 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) October 2 @ 12:00 pm – 1:00 pm **Tags:** mito support **Event Categories:** Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-23/) **Published:** August 2, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 10, 2023 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) ## Related Events - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) September 25 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) October 2 @ 12:00 pm – 1:00 pm **Event Categories:** Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-22/) **Published:** August 2, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") November 17, 2023 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) ## Related Events - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) September 25 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) October 2 @ 12:00 pm – 1:00 pm **Event Categories:** Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-20/) **Published:** August 2, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 15, 2023 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) ## Related Events - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) September 25 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) October 2 @ 12:00 pm – 1:00 pm **Event Categories:** Weekly Support Calls --- ### [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-19/) **Published:** August 2, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") December 22, 2023 @ 12:00 pm – 1:00 pm Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support. Join us each Friday (with the exception of the 1st Friday of the month when we host our [Mito Monthly Expert Series](https://www.mitoaction.org/resource/podcasts/) Zoom meeting) at 12:00 noon EST. Everyone is welcome! To participate in our new Zoom format, click the button below from your phone or computer! If you would rather call in, use phone number (646) 558-8656, Meeting ID: 853 0500 7549 or click [here](https://mitoaction-org.zoom.us/u/kewZjhVkH) to find a number local to you! [Register](https://mitoaction-org.zoom.us/meeting/register/tZEud-yorjwvHt2ADLDy3I_3SOIbuBwByUH9?_x_zm_rtaid=8KRpQD_KTnq4FnPtirSTAw.1643389040617.845f13db6f579d83069ad196bde45be3&_x_zm_rhtaid=815) ## Related Events - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) September 18 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) September 25 @ 12:00 pm – 1:00 pm - [![Mito Weekly Support Call](https://www.mitoaction.org/wp-content/plugins/events-calendar-pro/src/resources/images/tribe-related-events-placeholder.png)](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) ### [ Mito Weekly Support Call ](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) October 2 @ 12:00 pm – 1:00 pm **Event Categories:** Weekly Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-11/) **Published:** July 12, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 11 @ 7:38 pm Join us for a support call just for the men of the mitochondrial disease community. Spend an hour talking about challenges, victories and anything else you’d like to discuss. [Register](https://mitoaction-org.zoom.us/meeting/register/tZMoceiorzMvEtL8rUgNHkyFy3kvEdvVcE1n) ### Details - Date: September 11 - Time: 7:38 pm - Event Categories: [Events](https://www.mitoaction.org/calendar/category/events/), [Men’s Support Call](https://www.mitoaction.org/calendar/category/mens-support-call/) **Event Categories:** Events, Men’s Support Call --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-10/) **Published:** July 12, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 11 @ 7:38 pm Join us for a support call just for the men of the mitochondrial disease community. Spend an hour talking about challenges, victories and anything else you’d like to discuss. [Register](https://mitoaction-org.zoom.us/meeting/register/tZMoceiorzMvEtL8rUgNHkyFy3kvEdvVcE1n) ### Details - Date: September 11 - Time: 7:38 pm - Event Categories: [Events](https://www.mitoaction.org/calendar/category/events/), [Men’s Support Call](https://www.mitoaction.org/calendar/category/mens-support-call/) **Event Categories:** Events, Men’s Support Call --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-9/) **Published:** July 5, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 11 @ 7:38 pm Join us for a support call just for the men of the mitochondrial disease community. Spend an hour talking about challenges, victories and anything else you’d like to discuss. [Register](https://mitoaction-org.zoom.us/meeting/register/tZMoceiorzMvEtL8rUgNHkyFy3kvEdvVcE1n) ### Details - Date: September 11 - Time: 7:38 pm - Event Categories: [Events](https://www.mitoaction.org/calendar/category/events/), [Men’s Support Call](https://www.mitoaction.org/calendar/category/mens-support-call/) **Event Categories:** Events, Men’s Support Call --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-8/) **Published:** July 5, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 11 @ 7:38 pm Join us for a support call just for the men of the mitochondrial disease community. Spend an hour talking about challenges, victories and anything else you’d like to discuss. [Register](https://mitoaction-org.zoom.us/meeting/register/tZMoceiorzMvEtL8rUgNHkyFy3kvEdvVcE1n) ### Details - Date: September 11 - Time: 7:38 pm - Event Categories: [Events](https://www.mitoaction.org/calendar/category/events/), [Men’s Support Call](https://www.mitoaction.org/calendar/category/mens-support-call/) **Event Categories:** Events, Men’s Support Call --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-7/) **Published:** July 5, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 11 @ 7:38 pm Join us for a support call just for the men of the mitochondrial disease community. Spend an hour talking about challenges, victories and anything else you’d like to discuss. [Register](https://mitoaction-org.zoom.us/meeting/register/tZMoceiorzMvEtL8rUgNHkyFy3kvEdvVcE1n) ### Details - Date: September 11 - Time: 7:38 pm - Event Categories: [Events](https://www.mitoaction.org/calendar/category/events/), [Men’s Support Call](https://www.mitoaction.org/calendar/category/mens-support-call/) **Event Categories:** Events, Men’s Support Call --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-6/) **Published:** July 5, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 11 @ 7:38 pm Join us for a support call just for the men of the mitochondrial disease community. Spend an hour talking about challenges, victories and anything else you’d like to discuss. [Register](https://mitoaction-org.zoom.us/meeting/register/tZMoceiorzMvEtL8rUgNHkyFy3kvEdvVcE1n) ### Details - Date: September 11 - Time: 7:38 pm - Event Categories: [Events](https://www.mitoaction.org/calendar/category/events/), [Men’s Support Call](https://www.mitoaction.org/calendar/category/mens-support-call/) **Event Categories:** Events, Men’s Support Call --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-5/) **Published:** July 5, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 11 @ 7:38 pm Join us for a support call just for the men of the mitochondrial disease community. Spend an hour talking about challenges, victories and anything else you’d like to discuss. [Register](https://mitoaction-org.zoom.us/meeting/register/tZMoceiorzMvEtL8rUgNHkyFy3kvEdvVcE1n) ### Details - Date: September 11 - Time: 7:38 pm - Event Categories: [Events](https://www.mitoaction.org/calendar/category/events/), [Men’s Support Call](https://www.mitoaction.org/calendar/category/mens-support-call/) **Event Categories:** Events, Men’s Support Call --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-4/) **Published:** July 5, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 11 @ 7:38 pm Join us for a support call just for the men of the mitochondrial disease community. Spend an hour talking about challenges, victories and anything else you’d like to discuss. [Register](https://mitoaction-org.zoom.us/meeting/register/tZMoceiorzMvEtL8rUgNHkyFy3kvEdvVcE1n) ### Details - Date: September 11 - Time: 7:38 pm - Event Categories: [Events](https://www.mitoaction.org/calendar/category/events/), [Men’s Support Call](https://www.mitoaction.org/calendar/category/mens-support-call/) **Event Categories:** Events, Men’s Support Call --- ### [Wondering Wednesdays: Ask the Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-ask-the-genetic-counselor-3/2023-10-25/) **Published:** June 5, 2023 **Author:** Hilary Romkey **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") September 27, 2023 @ 8:00 pm – 9:00 pm Join us for Wondering Wednesdays: Ask the Genetic Counselor every 4th Wednesday of the month. Genetic Counselor and Mito Advocate Devin Shuman will host these informal non-recorded sessions to help make genetics feel more accessible to everyone. [Register](https://mitoaction-org.zoom.us/meeting/register/tZwoc-itrzwqGtTs_ggcYeYE2yCJ13KHgLuG#/registration) **Event Categories:** Wondering Wednesdays --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-2021-11-21/) **Published:** August 27, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2022/01/Mens-Support-Group-Zoom-Header-300x94.jpg) Join us for a support call just for the men of the mitochondrial disease community. Spend an hour talking about challenges, victories and anything else you’d like to discuss. \[maxbutton id=”22″ url=”https://mitoaction-org.zoom.us/meeting/register/tZMoceiorzMvEtL8rUgNHkyFy3kvEdvVcE1n” text=”Register” \] **Event Categories:** Events, Weekly Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-2021-12-19/) **Published:** August 27, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2022/01/Mens-Support-Group-Zoom-Header-300x94.jpg) Join us for a support call just for the men of the mitochondrial disease community. Spend an hour talking about challenges, victories and anything else you’d like to discuss. \[maxbutton id=”22″ url=”https://mitoaction-org.zoom.us/meeting/register/tZMoceiorzMvEtL8rUgNHkyFy3kvEdvVcE1n” text=”Register” \] **Event Categories:** Events, Weekly Support Calls --- ### [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-2022-02-13/) **Published:** August 27, 2021 **Author:** Jeannie **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ![](https://www.mitoaction.org/wp-content/uploads/2022/01/Mens-Support-Group-Zoom-Header-300x94.jpg) Join us for a support call just for the men of the mitochondrial disease community. Spend an hour talking about challenges, victories and anything else you’d like to discuss. \[maxbutton id=”22″ url=”https://mitoaction-org.zoom.us/meeting/register/tZMoceiorzMvEtL8rUgNHkyFy3kvEdvVcE1n” text=”Register” \] **Event Categories:** Events, Weekly Support Calls --- ## Glossary Terms ### [Y chromosome](https://www.mitoaction.org/glossary/y-chromosome/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") One of the sex chromosomes. Women typically have two X chromosomes, whereas men typically have one X chromosome and one Y chromosome. --- ### [X chromosome](https://www.mitoaction.org/glossary/x-chromosome/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") One of the sex chromosomes. Women typically have two X chromosomes, whereas men typically have one X chromosome and one Y chromosome. --- ### [Vitamin B3, Niacin](https://www.mitoaction.org/glossary/vitamin-b3-niacin/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Supplement that aids in its deficiency that leads to slow metabolism and an intolerance to the cold. It is made and used by your body to turn food into energy. --- ### [Vitamin B5, Pantothenic Acid](https://www.mitoaction.org/glossary/vitamin-b5-pantothenic-acid/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") essential to the synthesization of Coenzyme A. Which is essential to metabolize fatty acid and synthesize and metabolize proteins, carbohydrates and fats. --- ### [Vitamin E, Tocopheryl](https://www.mitoaction.org/glossary/vitamin-e-tocopheryl/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An antioxidant in the cellular and organelle membrane. --- ### [X-linked dominant (XLD inheritance)](https://www.mitoaction.org/glossary/x-linked-dominant-xld-inheritance/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") When a condition is caused by a change in a gene on one copy of the X chromosome and affects both males and females. For X-linked dominant conditions both males and females are affected if they have the genetic change at all. --- ### [X-linked recessive (XKR inheritance)](https://www.mitoaction.org/glossary/x-linked-recessive-xkr-inheritance/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") When a condition is caused by a change in a gene on the X chromosome but does not affect males and females the same way. Since men typically only have one X chromosome, X-linked recessive conditions typically affect men more severely than females or can cause fetal death in males. --- ### [Variants](https://www.mitoaction.org/glossary/variants/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Specific change in the DNA. --- ### [Vasculitis](https://www.mitoaction.org/glossary/vasculitis/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Inflammation of the blood vessels because of the immune system mistakenly attacking blood vessels. Due to an infection, medication, or another disease. --- ### [Venipuncture](https://www.mitoaction.org/glossary/venipuncture/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The puncture of a vein as part of a medical procedure typically to withdraw a blood sample or for an intravenous injection. --- ### [Ventricular tachycardia](https://www.mitoaction.org/glossary/ventricular-tachycardia/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It is characterized as a fast , abnormal heart rate. That starts in the heart’s lower chambers called the ventriculares. VT is defined by 3 or more heartbeats in a row at a rate of more than 100 beats a minute. --- ### [Ventricular bigeminy](https://www.mitoaction.org/glossary/ventricular-bigeminy/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Refers to alternating normal sinus and premature ventricular complexes. --- ### [Vitamin B12 (Cyanocobalamin)](https://www.mitoaction.org/glossary/vitamin-b12-cyanocobalamin/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Aids in red blood cell growth and proliferation. --- ### [Tyrosine](https://www.mitoaction.org/glossary/tyrosine/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An amino acid the body makes from another another amino acid called phenylalanine. This is an essential compound for the production of several important brain chemicals called neurotransmitters. --- ### [Urea Cycle Disorder](https://www.mitoaction.org/glossary/urea-cycle-disorder/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A genetic disorder that results in a deficiency of one of the six enzymes in the urea cycle. --- ### [Ureteral obstruction/ clogged kidney tubules](https://www.mitoaction.org/glossary/ureteral-obstruction-clogged-kidney-tubules/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A blockage in one or both of the tubes that carries urines from the kidneys to the bladder. --- ### [Urine Organic Acids](https://www.mitoaction.org/glossary/urine-organic-acids/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A test that provides a qualitative report of abnormal levels of organic acids which are organic compounds with acidic properties. This is identified via gas chromatography-mass spectrometry. --- ### [Uveitis](https://www.mitoaction.org/glossary/uveitis/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A form of eye inflammation. If affects the middle layer of tissue in the eye wall. --- ### [Valine](https://www.mitoaction.org/glossary/valine/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A branched chain amino acid. aids in helping to make energy. It is found in protein food sources. --- ### [Urate stones](https://www.mitoaction.org/glossary/urate-stones/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Uric stones form when the levels of uric acid in the urine are too high and or the urine is too acidic on a regular basis. --- ### [Tracheomalacia](https://www.mitoaction.org/glossary/tracheomalacia/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It occurs when he cartilage in the windpipe or trachea has not developed properly or was damaged. Instead of being rigid the walls of the trachea are floppy or flaccid. The cartilage cannot keep the windpipe open. --- ### [Transition Planning](https://www.mitoaction.org/glossary/transition-planning/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The formal process for helping kids with Individual Education Plans (IEP) figure out what they want to do after high school and how to get there. --- ### [Tuberous Sclerosis](https://www.mitoaction.org/glossary/tuberous-sclerosis/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The condition causes non-cancerous (benign) tumours to develop in different parts of the body.The tumours mostly affect the brain, eyes, skin, kidneys, heart and lungs. --- ### [Type 2 Myotonic Dystrophy](https://www.mitoaction.org/glossary/type-2-myotonic-dystrophy/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A milder version of DM type 1. --- ### [Transient (Temporary) Ischemic Attack (TIA)](https://www.mitoaction.org/glossary/transient-temporary-ischemic-attack-tia/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A mini stroke or warning stroke caused by a clot causing a temporary blockage to blood flow in the brain with a quick onset. --- ### [Troponin (Troponin complex](https://www.mitoaction.org/glossary/troponin-troponin-complex/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A set of proteins which function in contraction of heart and skeletal muscle. Some are found only in heart muscle. These are never found in blood unless there is heart muscle damage, releasing the contents of muscle cells. The presence of troponins in a blood sample is therefore a reliable test for heart attack. --- ### [Thrombosis](https://www.mitoaction.org/glossary/thrombosis-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") When a blood clot blocks a vein or artery. --- ### [Tilt Table Test](https://www.mitoaction.org/glossary/tilt-table-test/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This test involves changes a person’s position quickly and seeing how their blood pressure and heart rate respond. It involves lying on a table with a blood pressure cuff, electrocardiogram leads and an oxygen saturation probe attached to the patient’s body. From there the table is tilted and the various monitors are checked for abnormalities. This test checks for POTS, neurally mediated hypertension and neurally mediated syncope. --- ### [Timothy Syndrome](https://www.mitoaction.org/glossary/timothy-syndrome/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A rare multisystem genetic disorder affecting the heart and several other organs including the skeleton, metabolic system and the brain. --- ### [Tizanidine](https://www.mitoaction.org/glossary/tizanidine/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Medication to help relax certain muscles. --- ### [Thymidine Kinase Type 2 Deficiency Tk2D)](https://www.mitoaction.org/glossary/thymidine-kinase-type-2-deficiency-tk2d/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It is an enzyme deficiency defined by muscle weakness, difficulty breathing, and droopy or saggy eyelids. --- ### [Topamax (Topiramate)](https://www.mitoaction.org/glossary/topamax-topiramate/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The drug that helps to prevent headaches and treat epilepsy in adults and children with partial – onset seizures, generalized tonic-clonic seizures and seizures linked to Lennox-Gastaut Syndrome. --- ### [Strabismus](https://www.mitoaction.org/glossary/strabismus/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Condition in which both eyes do not align simultaneously when looking at the same thing. --- ### [Syncope](https://www.mitoaction.org/glossary/syncope/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A medical term for fainting or passing out. It is caused by a temporary drop in the amount of blood the flows to the brain. --- ### [Syringomyelia](https://www.mitoaction.org/glossary/syringomyelia/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The development of a fluid filled cyst within the spinal cord. Overtime the cyst can cause damage to the spinal cord, enlarge and causing pain. weakness and stiffness. --- ### [Taurine](https://www.mitoaction.org/glossary/taurine/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A supplement that is a naturally occurring sulfur containing amino acid. It helps to maintain proper hydration, regulate minerals such as calcium, support the central nervous system and eyes, regulate immune system health and antioxidant system. --- ### [Tegretol](https://www.mitoaction.org/glossary/tegretol/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A medication that is used to treat symptoms of epilepsy, trigeminal neuralgia and bipolar mania. --- ### [Succinic acid](https://www.mitoaction.org/glossary/succinic-acid/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A important metabolite that is involved in several chemical process in the body. Succinic acid is a key intermediate or both the Krebs cycle and the electron transport chain that generates ATP. --- ### [Supraventricular tachycardia (SVT)](https://www.mitoaction.org/glossary/supraventricular-tachycardia-svt/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An irregularly fast or erratic heartbeat that affects upper chambers of the heart. During an episode of SVT the heart beats about 150 to 200 times a minute. A typical heart beats about 60 to 10 times a minute. --- ### [Spasticity](https://www.mitoaction.org/glossary/spasticity-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Abnormal muscle stiffness or muscle tone which can cause problems with movement and speech --- ### [Shone's Complex](https://www.mitoaction.org/glossary/shones-complex/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A rare congenital heart disease consisting of multiple left heart obstructive defects. --- ### [Sjogren's Syndrome](https://www.mitoaction.org/glossary/sjogrens-syndrome/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A disorder of the immune system. It is identified by dry mouth and eyes. --- ### [Sleep terrors](https://www.mitoaction.org/glossary/sleep-terrors/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Sleep terrors are characterized by episodes of screaming, intense fear, and failing while sleeping. Sleep terrors are considered a parasomnia – an undesired occurrence while sleep. --- ### [SIBO (Small intestinal bacterial overgrowth)](https://www.mitoaction.org/glossary/sibo-small-intestinal-bacterial-overgrowth/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Excessive bacteria in the small intestine. SIBO is frequently implicated as the cause of chronic diarrhea and malabsorption. --- ### [Steroids (prednisone)](https://www.mitoaction.org/glossary/steroids-prednisone/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The man-made version of hormones that are naturally made in the body. That are designed to act like hormones to reduce inflammation. --- ### [Scleroderma](https://www.mitoaction.org/glossary/scleroderma/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A group of rare diseases that involve the hardening and tightening of the skin and connective tissues. --- ### [Seizures](https://www.mitoaction.org/glossary/seizures-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Episodes of abnormal electrical activity in the brain. --- ### [Reglan](https://www.mitoaction.org/glossary/reglan/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A medication used to treat certain conditions of the stomach and intestines. It is used to treat ongoing heartburn when the other medications do not work. --- ### [Rett Syndrome](https://www.mitoaction.org/glossary/rett-syndrome/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Rare genetic neurological disorder that occurs almost exclusively in girls and leads to severe impairments affecting nearly every aspect of the child’s life. Like the ability to speak, walk, eat or even breathe easily. --- ### [Ribose](https://www.mitoaction.org/glossary/ribose/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A simple sugar produced by the body that serves as a building block forms part of DNA and --- ### [Septic Shock](https://www.mitoaction.org/glossary/septic-shock/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A infection that was born from sepsis that that worsens to potentially causes single or multiple organ failure. --- ### [Renal Tubular Acidosis (RTA)](https://www.mitoaction.org/glossary/renal-tubular-acidosis-rta/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This disease occurs when the kidneys are damaged and cannot remove waste, called acid, from the blood. --- ### [Protein substrates](https://www.mitoaction.org/glossary/protein-substrates/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A substrate is a molecule upon which an enzyme acts. Enzyme catalyze chemical reactions involving the substrate. In a protein substrate reaction the substrate is a milk protein and the enzyme is rennin. --- ### [Progress Reports](https://www.mitoaction.org/glossary/progress-reports/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Quarterly updates on how the child is progressing in targeted goals listed with the special education plan. A school, family or guardian can request a meeting at anytime but, school plans are revisited and updated annually. --- ### [Progressive Supranuclear Palsy](https://www.mitoaction.org/glossary/progressive-supranuclear-palsy/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Uncommon brain disorder that causes serious problems with walking, balance and eye movements and later with swallowing. The disorder results from the deterioration of cells in areas of the brain that control body movements, coordination and thinking. --- ### [Protein microarray](https://www.mitoaction.org/glossary/protein-microarray/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A high throughput method to measure how proteins interact and function. --- ### [Prion diseases](https://www.mitoaction.org/glossary/prion-diseases/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Proteins that can fold incorrectly and cause damage to the brain. --- ### [Prophylactic implantable cardiovascular defibrillator (ICD)](https://www.mitoaction.org/glossary/prophylactic-implantable-cardiovascular-defibrillator-icd/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It treats potentially lethal cardiac arrhythmias in patients who have not previously experienced such but are at a considerable risk due to an underlying heart disease. --- ### [Polyneuropathy](https://www.mitoaction.org/glossary/polyneuropathy/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This condition affects several nerves in different parts of the body at the same time. The neuropathy can affect the nerves responsible for feeling, movement, or both. The neuropathy can also limit or take away the function of autonomic nerves responsible for digestion, blood pressure, or heart rate. --- ### [Pompe Disease](https://www.mitoaction.org/glossary/pompe-disease/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The disease happens when your body can’t make a protein that breaks down a complex sugar called glycogen for energy. --- ### [Potassium](https://www.mitoaction.org/glossary/potassium/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A mineral and electrolyte that helps your muscles work. --- ### [Prealbumin](https://www.mitoaction.org/glossary/prealbumin/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A protein made in the liver that helps to carry thyroid hormones and Vitamin A through the bloodstream. It also helps regulate how your body uses energy. If your prealbumin levels are lower than normal, it may be a sign of malnutrition. --- ### [POTS (Positional Orthostatic Tachycardia Syndrome)](https://www.mitoaction.org/glossary/pots-positional-orthostatic-tachycardia-syndrome/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A form of dysautonomia and . orm of orthostatic intolerance. Symptoms of the condition occur upon standing up from a reclining position. The primary symptom of the intolerance is lightheadedness, fainting and an uncomfortable, rapid increase in the heartbeat. --- ### [Preventricular contraction (PVC)](https://www.mitoaction.org/glossary/preventricular-contraction-pvc/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Extra heartbeats that begin in one of the heart’s two lower pumping chambers (ventricles). --- ### [Polymyositis](https://www.mitoaction.org/glossary/polymyositis/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An uncommon inflammatory disease that causes muscle weakness affecting both sides of your body. --- ### [Pectus Excavatum](https://www.mitoaction.org/glossary/pectus-excavatum/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A condition in which a person’s breastbone is sunken into his or her chest. A severe case of this condition can eventally interfere with the function of the heart and lungs. --- ### [Placebo](https://www.mitoaction.org/glossary/placebo/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An inactive substance or treatment that looks the same as, and is given in the same way as, an active drug or intervention/treatment being studied. --- ### [Placebo-controlled study](https://www.mitoaction.org/glossary/placebo-controlled-study/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A way of testing a medical therapy, In which a group of subjects receives an actual treatment. While the other group receives a sham or fake medical treatment. --- ### [Polymorphism](https://www.mitoaction.org/glossary/polymorphism/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Variations in the DNA that we all have aren’t disease causing. --- ### [Physical therapy (PT)](https://www.mitoaction.org/glossary/physical-therapy-pt/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Treatments aimed at helping someone improve the ability to move parts of their body. --- ### [Ozempic](https://www.mitoaction.org/glossary/ozempic/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A medication that acts as a GLP-1 receptor agonist that selectively binds to and activates the GLP-1 receptor. The medication lowers fasting and post diner or lunch blood glucose by stimulating insulin secretion ina glucose-dependent manner. --- ### [Pancreatitis attack](https://www.mitoaction.org/glossary/pancreatitis-attack/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A sudden attack that results in an inflamed pancreas. It is usually associated with severe upper abdominal pain. Other symptoms include nausea, vomiting, diarrhea, bloating and fever. --- ### [PCSK9 inhibitors](https://www.mitoaction.org/glossary/pcsk9-inhibitors/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The inhibitors can help treat high cholesterol by directly modifying the PCSK9 gene to reduce the amount of bad cholesterol in your body. --- ### [Pearson Syndrome](https://www.mitoaction.org/glossary/pearson-syndrome/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A rare disease that targets the bone marrow and pancreas. Through dysfunction of cells in the bone marrow that produce white and red bloods cells along with platelets. --- ### [PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders with Streptococcal Infections)](https://www.mitoaction.org/glossary/pandas-pediatric-autoimmune-neuropsychiatric-disorders-with-streptococcal-infections/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Occurs when strep triggers a misdirected immune response. Which results in the inflammation of a child’s brain. In which the child quickly exhibits life changing symptoms such as OCD, anxiety, tics, personality changes, etc. --- ### [Papillary dysfunction and ampullary stenosis](https://www.mitoaction.org/glossary/papillary-dysfunction-and-ampullary-stenosis/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") These are disorders centered at the ampulla of Vater that can cause symptoms of intermittent biliary obstruction. --- ### [Nutcracker Syndrome](https://www.mitoaction.org/glossary/nutcracker-syndrome/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A rare vein compression disorder that occurs when arteries, most often the abdominal aorta and superior mesenteric artery, squeezes the left renal (kidney) vein. --- ### [Nystagmus](https://www.mitoaction.org/glossary/nystagmus/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A vision condition in which the eye makes repetitive uncontrolled movements. These movements often result in reduced vision and depth perception and affect balance and coordination. --- ### [Optic Neuritis](https://www.mitoaction.org/glossary/optic-neuritis/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Swelling that damages the optic nerve. This damage causes pain with eye movement and temporary vision loss in one eye. --- ### [Occupational therapy (OT)](https://www.mitoaction.org/glossary/occupational-therapy-ot/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Treatments aimed at helping someone complete certain daily tasks of daily living --- ### [Organic Acidemia](https://www.mitoaction.org/glossary/organic-acidemia/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A term used to classify a group of metabolic disorders which disrupt normal amino acid metabolism, like branched-chain amino acids, causing a build up of acids that are not usually present. --- ### [Ornithine Transcarbamylase Deficiency (OTD)](https://www.mitoaction.org/glossary/ornithine-transcarbamylase-deficiency-otd/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A rare X-linked genetic disorder characterized by a complete or partial lack of the enzyme Ornithine Transcarbamylase. It is one of the six enzymes that break down and remove nitrogen in the body. --- ### [Oromandibular dystonia](https://www.mitoaction.org/glossary/oromandibular-dystonia/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A movement disorder characterized by involuntary, paroxysmal and patterned muscle contractions of varying severity resulting in sustained spasms of masticatory muscles affecting the jaw, tongue, face and pharynx. --- ### [N-Acetylcysteine](https://www.mitoaction.org/glossary/n-acetylcysteine/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Inhaled for cystic fibrosis patients to break up mucus, it is also injected for tylenol overdose. Supplement taken for kidney disease for damaged tissue. --- ### [Natural History Study](https://www.mitoaction.org/glossary/natural-history-study/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A type of medical research study in which researchers examine how a disease or medical condition develops over time. --- ### [Needle Biopsy](https://www.mitoaction.org/glossary/needle-biopsy/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A procedure to obtain a sample of cells from your body for laboratory testing. Needle biopsy may be used to take tissue of fluid samples from muscles, bones, and other organs such a the lover or lungs. --- ### [Norco](https://www.mitoaction.org/glossary/norco/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A combination of acetaminophen and hydrocodone. --- ### [Nabilone, Cesamet](https://www.mitoaction.org/glossary/nabilone-cesamet/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A synthetic cannabinoid with therapeutic use as an anti- nausea and vomiting and adjunct analgesic for neurological pain. --- ### [Nasogastric tube (NG tube)](https://www.mitoaction.org/glossary/nasogastric-tube-ng-tube/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A flexible tube of rubber of plastic that is passed through the nose, down through the esophagus and into the stomach. --- ### [Newborn screening panels (NBS, newborn screening)](https://www.mitoaction.org/glossary/newborn-screening-panels-nbs-newborn-screening/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Screening done during the first 48-72 hours of life that look for certain treatable genetic conditions. --- ### [Myotonic Dystrophy Type 1](https://www.mitoaction.org/glossary/myotonic-dystrophy-type-1/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A genetic disorder that causes progressive muscle weakness affecting all of the bodies organs and muscles. --- ### [mtDNA Deletion Syndrome](https://www.mitoaction.org/glossary/mtdna-deletion-syndrome/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Mitochondrial DNA deletion syndromes are caused by deletions of the mitochondrial DNA. --- ### [Myocarditis](https://www.mitoaction.org/glossary/myocarditis/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The inflammation of the heart muscle. It is caused by the body’s immune system in response to a trigger like an infection. --- ### [Myoglobinuria](https://www.mitoaction.org/glossary/myoglobinuria/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A breakdown of muscle after exercise or muscle injury. That causes leakage of a protein called myoglobin from the muscles into the urine. This occurrence stresses the kidney’s ability to filter waste from the bloods and can cause kidney damage. --- ### [Mutation (genetic variant, genetic change)](https://www.mitoaction.org/glossary/mutation-genetic-variant-genetic-change/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A change in the sequence of base pairs in the genetic material (DNA) --- ### [Myalgic encephalomyelitis (Chronic Fatigue Syndrome, ME/CFS)](https://www.mitoaction.org/glossary/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A condition characterized by overwhelming fatigue that is not improved by rest. --- ### [Mitochondrial Dysfunction](https://www.mitoaction.org/glossary/mitochondrial-dysfunction/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This is when mitochondria do not work as well as they should due to another disease or condition. Many conditions can lead to secondary dysfunction. --- ### [Motegrity](https://www.mitoaction.org/glossary/motegrity/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A prescription medicine used in adults to treat a type of constipation called chronic idiopathic constipation. --- ### [Mottles](https://www.mitoaction.org/glossary/mottles/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This occurs when the heart is no longer able to pump blood effectively. The blood pressure slowly drops and blood flow through the body slows. This causes the extremities to begin to feel cold to the touch. --- ### [Mito Swab (Buccal Swab)](https://www.mitoaction.org/glossary/mito-swab-buccal-swab/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Buccal Swab test to analyze the Mitochondrial Electron Transport Chain Complex (ETC 1 & 5). --- ### [Mitochondrial methionyl-tRNA formyltransferase MTFMT)](https://www.mitoaction.org/glossary/mitochondrial-methionyl-trna-formyltransferase-mtfmt/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A protein in humans that is encoded by the MTFMT gene. The encoded protein by the nuclear gene localized to the mitochondrion. That is where it catalyzes the formylation of methionyl-tRNA. Recessive- types of mutations in MTFMT have been shown to cause mitochondrial disease. --- ### [MNGIE, Mitochondrial Neurogastrointestinal Encephalopathy](https://www.mitoaction.org/glossary/mngie-mitochondrial-neurogastrointestinal-encephalopathy/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A multisystem disorder characterized by progressive degeneration of the muscles of the gastrointestinal tract. Causing gastrointestinal dysmotility, weakening of extraocular muscles causing drooping of the eyelids and restricted eye movements. The condition also causes degeneration of the peripheral nerves causing altered sensations and weakness of the arms and legs along with general wasting. --- ### [Metabolic factors](https://www.mitoaction.org/glossary/metabolic-factors-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Substances or conditions that impact the body’s ability to break down food for energy. --- ### [Microarray Analysis](https://www.mitoaction.org/glossary/microarray-analysis/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An interpretation technique that generates data from DNA, RNA and protein microarray which allows researchers to investigate the expression state of a large number of genes or genomes. --- ### [Methylmalonic acid](https://www.mitoaction.org/glossary/methylmalonic-acid/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A compound that reacts with Vitamin B-12 to produce coenzyme A (CoA). --- ### [Mic-Key button](https://www.mitoaction.org/glossary/mic-key-button/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A low profile tube that allows children to receive nutrition, fluids and medication. directly into the stomach. --- ### [Methylenetetrahydrofolate Reductase (MTHFR)](https://www.mitoaction.org/glossary/methylenetetrahydrofolate-reductase-mthfr/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An enzyme that breaks down the amino acid homocysteine. The MTHFR gene that codes this enzyme has the potential to mutate. Which can either interfere with the enzyme ability to function normally or completely inactivate it. --- ### [Methylsuccinic Acid](https://www.mitoaction.org/glossary/methylsuccinic-acid/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A normal metabolite found in human fluids and is an intermediate metabolite in the breakdown of fatty acids. --- ### [Miropure Urolithin](https://www.mitoaction.org/glossary/miropure-urolithin/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A highly pure form of Urolithin A, a postbiotic clinically shown to energize cells, increase muscle strength and improve endurance. --- ### [Mellitus](https://www.mitoaction.org/glossary/mellitus/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A variable disorder of carbohydrate metabolism and usually characterized by the inadequate secretion or utilization of insulin by excessive urine production, excessive amounts of sugar in the blood and urine and by thirst, hunger and loss of weight. --- ### [Mestinon](https://www.mitoaction.org/glossary/mestinon/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Affect the chemicals in the body that are involved in the communication between nerve impulses and muscle movement. --- ### [Maximal Inspiratory Pressure (MIP)](https://www.mitoaction.org/glossary/maximal-inspiratory-pressure-mip/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The pressure generated during maximal inspiratory effort against a closed system. To measure MEP you will take a deep breath in, then blow out as hard as you can against a closed mouthpiece. --- ### [MCHC](https://www.mitoaction.org/glossary/mchc/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Measures the concentration of hemoglobin in a red blood cell relative to the size of the cell itself. --- ### [Median Arcuate Ligament Syndrome (MALS)](https://www.mitoaction.org/glossary/median-arcuate-ligament-syndrome-mals/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This occurs when the arc-shaped band of tissue in the chest area presses on or traps the artery that supplies blood to the organs in the upper abdomen. --- ### [Lysine Methylation](https://www.mitoaction.org/glossary/lysine-methylation/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This modification process changes the binding ability of transcription factors of DNA and regulation of transcriptional activities. The regulatory outcome is related to protein substrates, modification sites and cell context. --- ### [MACE surgery](https://www.mitoaction.org/glossary/mace-surgery/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The surgeon creates a channel using the appendix or ileum from the beginning of the colon to an artificial opening called a stoma. --- ### [Magnesium](https://www.mitoaction.org/glossary/magnesium/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It is an important mineral that helps with nerve and muscle function, regulating blood pressure, and immune system health. --- ### [Magnetic Resonance spectroscopy](https://www.mitoaction.org/glossary/magnetic-resonance-spectroscopy/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A noninvasive diagnostic tests for measuring biochemical changes in the brain, especially the presence of tumors. --- ### [Mast Cell Activation](https://www.mitoaction.org/glossary/mast-cell-activation/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A condition associated with allergy cells and are responsible for immediate allergic reactions. --- ### [Lysinuric Protein Intolerance](https://www.mitoaction.org/glossary/lysinuric-protein-intolerance/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A genetic condition that is caused by the body’s inability to digest the amino acid lysine, arginine, and ornithine these are some of the building blocks of protein. --- ### [Maximal Expiratory Pressure (MEP)](https://www.mitoaction.org/glossary/maximal-expiratory-pressure-mep/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Is also measured by maximal inspiratory effort against a closed system at total lung capacity because expiratory muscle strength is directly related to lung volume. --- ### [LV Diastolic Dysfunction](https://www.mitoaction.org/glossary/lv-diastolic-dysfunction/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A condition in which the relaxation process of the heart is disturbed as the left ventricle becomes stiffer than normal. Subsequently causing weakening of the heart which can lead to its failure. --- ### [Low proline](https://www.mitoaction.org/glossary/low-proline/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Low proline levels can indicate low protein. it may prevent optimal connective tissue maintenance. Because proline is a major component of collagen. --- ### [Lysine Acetylation](https://www.mitoaction.org/glossary/lysine-acetylation/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The transfer of acetyl group from acetyl-coenzyme A to the primary amine in the lysine side of the protein. Which leads to the. neutralization of the position’s positive electrostatic charge. --- ### [Low plasma tyrosine](https://www.mitoaction.org/glossary/low-plasma-tyrosine/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Implicated in depression hypothyroidism and blood pressure disorders. If phenylalanine is normal or high, iron vitamin C and Niacin supplementation may help to convert phenylalanine to tyrosine. --- ### [Lumbar Puncture (spinal tap)](https://www.mitoaction.org/glossary/lumbar-puncture-spinal-tap/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This is a procedure in which a needle is inserted between two lumbar bones to remove a sample of cerebrospinal fluid. This the fluid that surrounds your brain and spinal cord to protect them from injury. --- ### [Lupus (Systemic lupus erythematosus, SLE)](https://www.mitoaction.org/glossary/lupus-systemic-lupus-erythematosus-sle/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A disease that occurs when the body’s immune system attacks your own tissues and organs. Lupus induced inflammation can affect many different body systems including your joints, skins, blood cells, brain, heart and lungs. --- ### [Loose Anagen Syndrome](https://www.mitoaction.org/glossary/loose-anagen-syndrome/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A hair disorder in which the hair is ‘loose’ and can be painlessly pulled from the scalp. Essentially the hair is not properly anchored, there is no known cause for this disorder. --- ### [Liver Cirrhosis](https://www.mitoaction.org/glossary/liver-cirrhosis/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Chronic liver damage leading scarring and failure from permanent damage. Scar tissue replaces your healthy liver tissue. --- ### [Loop recorder](https://www.mitoaction.org/glossary/loop-recorder/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An implanted heart recording device that is placed underneath the chest skin. The most common use includes looking for causes of fainting, palpitations, very fast or slow heartbeats and hidden rhythms that cause strokes. --- ### [Low homocysteine](https://www.mitoaction.org/glossary/low-homocysteine/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") AKA low levels of glutathiones. If the body has too little it is open to more oxidative damage. --- ### [Low plasma citrulline](https://www.mitoaction.org/glossary/low-plasma-citrulline/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An indicator of a proximal urea cycle defect. --- ### [Low plasma taurine](https://www.mitoaction.org/glossary/low-plasma-taurine/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") May increase the risk for oxidative damage, impaired fat digestion, cardiovascular disease related problems and seizure disorders. --- ### [L-Methylfolate](https://www.mitoaction.org/glossary/l-methylfolate/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A folic acid supplement form that is used to prevent low levels of Folic acid. Low Folic acid levels can lead to certain types of anemia. --- ### [Laryngeal Spasms](https://www.mitoaction.org/glossary/laryngeal-spasms/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The frightening experience of vocal cords suddenly seizing or close when taking a breath this blocks airflow into the lungs. --- ### [Laryngomalacia](https://www.mitoaction.org/glossary/laryngomalacia/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A congenital softening of the tissue of the larynx above the vocal cords. The laryngeal structure is malformed and floppy causing the tissue to fall over the airway opening and partially block it. --- ### [Leaky Gut Syndrome](https://www.mitoaction.org/glossary/leaky-gut-syndrome/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The gut barrier becomes damaged and the intestinal wall becomes permeable. This allows food particles, chemical additives, bad bacteria, viruses, fungi and other substances to leak through the gut barrier to the bloodstream. --- ### [Leucine](https://www.mitoaction.org/glossary/leucine/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") One of the nine essential amino acids. It contributes to growth hormone production, the repair and growth of muscles and tissue, aids in blood sugar regulation and wound healing. --- ### [Leber's congenital amaurosis](https://www.mitoaction.org/glossary/lebers-congenital-amaurosis/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A rare type of inherited eye disorder that causes severe vision loss at birth. It is present in two to three out of one hundred thousand babies. It is the most common type of inherited blindness in childhood. --- ### [Ischemic Exercise test](https://www.mitoaction.org/glossary/ischemic-exercise-test/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A clinical tool for evaluation for patients with a suspected metabolic disorder for muscle function. A confirmation of glycolytic metabolism is a failure in elevation of lactate in the blood from exercised muscles. --- ### [Isoleucine](https://www.mitoaction.org/glossary/isoleucine/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An essential amino acid. It is used in the biosynthesis of proteins. It may help in how hemoglobin is made and how oxygen is carried through the body. --- ### [Keppra](https://www.mitoaction.org/glossary/keppra/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An anticonvulsant. --- ### [Ketones](https://www.mitoaction.org/glossary/ketones/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") By-products formed when the body breaks down fat for energy. The ketones can accumulate in the blood and an excessive amount of ketones is called ketosis. --- ### [Klebsiella pneumoniae](https://www.mitoaction.org/glossary/klebsiella-pneumoniae/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A bacterium that normally lives inside the human intestines. If it gets into other parts of the body it can lead to pneumonia, bloodstream infections, meningitis and urinary tract infections. --- ### [Kyphoscoliosis](https://www.mitoaction.org/glossary/kyphoscoliosis/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An abnormal curve of the spine on the coronal and the sagittal planes. it is a combination of two abnormal spine conditions; scoliosis and kyphosis. --- ### [L-arginine](https://www.mitoaction.org/glossary/l-arginine/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An amino acid that helps to build protein in the body. --- ### [Inheritance](https://www.mitoaction.org/glossary/inheritance-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The way a genetic condition is passed down in a family. --- ### [Inherited condition](https://www.mitoaction.org/glossary/inherited-condition-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A condition that is passed down in families through DNA --- ### [Interstitial Cystitis](https://www.mitoaction.org/glossary/interstitial-cystitis/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A chronic bladder condition resulting in recurring discomfort or pain in the bladder. People with IC usually have inflamed or irritated bladder walls which can cause scarring and stiffening of the bladder. --- ### [Inclusion body myositis](https://www.mitoaction.org/glossary/inclusion-body-myositis/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A rare condition that causes muscle weakness and damage. --- ### [Implantable cardiac defibrillators (ICD)](https://www.mitoaction.org/glossary/implantable-cardiac-defibrillators-icd/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A small battery-powered device placed in the chest to detect and stop irregular heartbeats (arrhythmias). --- ### [Intravenous Immunoglobulin (IVIG)](https://www.mitoaction.org/glossary/intravenous-immunoglobulin-ivig/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It is a therapy treatment for patients with antibody deficiencies. it is prepared from immunoglobulin (antibodies) from the plasma of healthy donors. --- ### [IEP Extended School Year](https://www.mitoaction.org/glossary/iep-extended-school-year/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The services of ESY are provided when school’s typically not in session. The services are individualized to help each student maintain their skills over break. --- ### [Immunoglobulin IgA](https://www.mitoaction.org/glossary/immunoglobulin-iga/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Antibodies produced to protect body surfaces that are exposed to foreign substances. Found in the nose, eyes, ears, respiratory and digestive tracts, vagina, saliva and tears --- ### [Immunoglobulin IgD](https://www.mitoaction.org/glossary/immunoglobulin-igd/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An antibody isotype is usually co-expressed with another cell surface antibody called IgM. --- ### [Immunoglobulin IgE](https://www.mitoaction.org/glossary/immunoglobulin-ige/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") These antibodies are found in the lungs, skin and mucous membranes. They react to foreign substances like animal dander and pollen. --- ### [Immunoglobulin IgG](https://www.mitoaction.org/glossary/immunoglobulin-igg/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The smallest but most common antibodies. They are found in all body fluids and they are important in fighting viruses and bacteria. --- ### [Immunoglobulin IgM](https://www.mitoaction.org/glossary/immunoglobulin-igm/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The largest antibodies and the first to respond to infections. --- ### [IEP, 504](https://www.mitoaction.org/glossary/iep-504/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The skills that need to be taught by an educator or related services professional so that the child’s educational needs are met. --- ### [Holter Monitor](https://www.mitoaction.org/glossary/holter-monitor/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A type of portable electrocardiogram that records the electrical activity of the heart. it does this continuously over 24 hours or longer. In order to measure a normal or “resting” heart rate and overall heart in a normal setting. --- ### [Homocysteine](https://www.mitoaction.org/glossary/homocysteine/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An amino acid produced when proteins are broken down. Having a high homocysteine level can contribute to arterial damage and blood clots in its vessels. Increased levels can also indicate a deficiency in vitamin B12 or folate. --- ### [Hyperammonemia](https://www.mitoaction.org/glossary/hyperammonemia/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A dangerous metabolic disturbance characterized by an excess of ammonia in the blood. --- ### [Hypoparathyroidism](https://www.mitoaction.org/glossary/hypoparathyroidism/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") When 1 or more of your parathyroid glands is not active enough. They are not making enough parathyroid hormone therefore lowering the level of calcium in the blood. --- ### [Hypotony](https://www.mitoaction.org/glossary/hypotony/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Low intraocular pressure can adversely impact eyes. --- ### [Idebenona](https://www.mitoaction.org/glossary/idebenona/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A man made supplement similar to to coenzyme Q-10. It has an antioxidant reaction that appears to protect a wide variety of cells from oxidative change. --- ### [Hyperintensity](https://www.mitoaction.org/glossary/hyperintensity/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An area of high intensity on types of MRI scans of the brain of the brain of a human that reflects lesions produced largely by demyelination or axonal loss. (Demyelination slows down messages sent along axons and causes the axon to deteriorate.) --- ### [HMG-CoA reductase inhibitor](https://www.mitoaction.org/glossary/hmg-coa-reductase-inhibitor/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A substance that blocks an enzyme needed by the body to make cholesterol and lowers the amount of cholesterol in the blood. --- ### [Hemodynamic instability](https://www.mitoaction.org/glossary/hemodynamic-instability/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Inadequate blood flow to the organs, usually occurring with dangerously low blood pressure. --- ### [HIDA scan](https://www.mitoaction.org/glossary/hida-scan/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An imaging procedure used to diagnose problems of the liver, gallbladder, and bile ducts. For the procedure a radioactive tracer is injected into a vein in your arm. The tracer travels into your bloodstream and into the liver where the bile producing cells take it up. --- ### [Histone](https://www.mitoaction.org/glossary/histone/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A protein that provides structural support to a chromosome. In order for a very long DNA molecule to fit into the cell nucleus, they wrap around complexes of histone proteins. --- ### [HMB metabolite of leucine](https://www.mitoaction.org/glossary/hmb-metabolite-of-leucine/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It reduces the muscle protein breakdown. It appears to have an anti catabolic role for muscle but is not as effective as it parent amino acid for inducing muscle protein synthesis. --- ### [Hoffman Syndrome](https://www.mitoaction.org/glossary/hoffman-syndrome/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A specific rare form of hypothyroid myopathy, which causes proximal weakness and pseudohypertrophy of the muscles. --- ### [Glaucoma](https://www.mitoaction.org/glossary/glaucoma/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A group of eye conditions that damage the optic nerve. It is caused by an abnormally high pressure in the eye. --- ### [Glosis of the brain](https://www.mitoaction.org/glossary/glosis-of-the-brain/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This occurs when the body creates more or larger glial cells. Which are cells that support nerve cells. new glial cells can cause scars on your brain therefore there is an impact on the way that the body works. --- ### [Hashimoto's thyroiditis](https://www.mitoaction.org/glossary/hashimotos-thyroiditis/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The chronic inflammation of the thyroid. --- ### [Hearing Aids](https://www.mitoaction.org/glossary/hearing-aids/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A small device that fits in or on the ear, worn by a partially deaf person to amplify sound. --- ### [Hematology](https://www.mitoaction.org/glossary/hematology/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A branch of medicine focusing on the blood and its disorders. --- ### [Heme](https://www.mitoaction.org/glossary/heme/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Heme naturally occurs in the protein hemoglobin in an animal’s blood or myoglobin in the muscle. --- ### [Gastroparesis/Delayed Gastric Emptying](https://www.mitoaction.org/glossary/gastroparesis-delayed-gastric-emptying/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A condition that affects the normal spontaneous movement of the muscles in the stomach. --- ### [Gabapentin](https://www.mitoaction.org/glossary/gabapentin/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It is used to help control partial seizures (convulsions) in the treatment of epilepsy. --- ### [Gastric Emptying Study](https://www.mitoaction.org/glossary/gastric-emptying-study/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A test to determine the time it takes a meal to m0ve through a person’s stomach. --- ### [Gastroenterology](https://www.mitoaction.org/glossary/gastroenterology/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A branch of medicine focusing on organs that break down food like the stomach and intestines. --- ### [Gilbert's Syndrome](https://www.mitoaction.org/glossary/gilberts-syndrome/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A condition of the liver in which it does not properly produce bilirubin. Symptoms of the condition are a slight yellowing of the skin and whites of the eyes or fatigue, weakness or abdominal pain. --- ### [Gastroesophageal Reflux disease (GERD)](https://www.mitoaction.org/glossary/gastroesophageal-reflux-disease-gerd/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A digestive disorder that affects the ring of muscle between your esophagus and your stomach. If you have it, you may get heartburn or acid digestion. --- ### [Gastrointestinal (GI)](https://www.mitoaction.org/glossary/gastrointestinal-gi/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Problems in the stomach or intestines. --- ### [Ferritin Blood test](https://www.mitoaction.org/glossary/ferritin-blood-test/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Helps your doctor understand how much iron your body stores. --- ### [Ferroptosis](https://www.mitoaction.org/glossary/ferroptosis/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A form of programmed cell death, that is different from apoptosis. Driven by the iron-dependent oxidative degradation of lipids. --- ### [Fibromyalgia](https://www.mitoaction.org/glossary/fibromyalgia/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. --- ### [Fibrosis](https://www.mitoaction.org/glossary/fibrosis/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The thickening and scarring of connective tissue. --- ### [First Degree AV Block](https://www.mitoaction.org/glossary/first-degree-av-block/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A condition of abnormally slow conduction of the Atrioventricular node. --- ### [Folinic Acid (Leucovorin)](https://www.mitoaction.org/glossary/folinic-acid-leucovorin/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Reduced form of folic acid (vitamin B9). --- ### [Exocrine pancreatic Insufficiency](https://www.mitoaction.org/glossary/exocrine-pancreatic-insufficiency/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It occurs when your pancreas doesn’t produce enough digestive enzymes. --- ### [Exophoria](https://www.mitoaction.org/glossary/exophoria/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") When you have exophoria, there’s a problem with how your eyes coordinate their movements. It occurs when your eyes tend to drift outward or one eye drifts from the other. --- ### [Fatigue](https://www.mitoaction.org/glossary/fatigue/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The overall feeling of tiredness or lack of energy. It is not the same as simply feeling drowsy or sleepy. Being fatigued means having no motivation or energy. --- ### [Ferritin](https://www.mitoaction.org/glossary/ferritin/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A blood protein that contains iron. --- ### [Facioscapulohumeral muscular dystrophy (FSHD](https://www.mitoaction.org/glossary/facioscapulohumeral-muscular-dystrophy-fshd/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A rare genetic muscle disease that affects the muscles of a child’s face, shoulders, upper arms and lower legs. --- ### [Fasciotomy](https://www.mitoaction.org/glossary/fasciotomy/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A surgery to relieve swelling and pressure in a compartment of the body. --- ### [Fatty Acid Oxidation Disorders (FAOD)](https://www.mitoaction.org/glossary/fatty-acid-oxidation-disorders-faod/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A group of genetic conditions that affect how the body breaks down fats to make energy. --- ### [Epidermolysis Bullosa](https://www.mitoaction.org/glossary/epidermolysis-bullosa/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A group of rare diseases that cause fragile, blistering skin. --- ### [Eosinophilic Esophagitis](https://www.mitoaction.org/glossary/eosinophilic-esophagitis/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A chronic immune system disease in which a type of white blood cells builds up in the lining of the tube that connects your mouth the stomach. --- ### [Erythromelalgia](https://www.mitoaction.org/glossary/erythromelalgia/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A rare condition that primarily affects the feet and less commonly the hands. It is characterized by intense burning pain, severe redness, and increased skin temperature. The symptoms may be episodic or almost continuous in nature. --- ### [Esophagitis](https://www.mitoaction.org/glossary/esophagitis/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Inflammation of tissue that may damage the esophagus. Which is the muscular tube that delivers food from your mouth to your stomach. --- ### [Ester C with bioflavonoids](https://www.mitoaction.org/glossary/ester-c-with-bioflavonoids/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A form of vitamin C that is better absorbed. --- ### [Everolimus](https://www.mitoaction.org/glossary/everolimus/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") used to treat advanced late stage cancer or noncancerous tumors, a brain tumor, kidney tumor, epilepsy with tuberous sclerosis complex and neuroendocrine tumors of the pancreas stomach or bowels and lungs. It is used when other medicines do not work or surgery cannot be done. it works by interfering with the growth of cancer cells. --- ### [Dysexecutive Syndrome](https://www.mitoaction.org/glossary/dysexecutive-syndrome/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A dysregulation of executive functions that is strictly associated with frontal lobe damage. It encompasses emotional, motivational, and behavioral symptoms, as well as cognitive deficits. --- ### [Elevated Liver Enzymes](https://www.mitoaction.org/glossary/elevated-liver-enzymes/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") When liver enzymes are elevated in the bloodstream it is a sign that the enzymes in the liver are inflamed or injured. Common symptoms of having elevated liver enzymes are pain or swelling in the abdomen, nausea and vomiting, dark urine, weakness, etc. --- ### [Endoscopy](https://www.mitoaction.org/glossary/endoscopy/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The insertion of a long, thin tube directly into the body to observe an internal organ or tissue in detail. It can be inserted into openings of the body such as the mouth or anus. --- ### [Ehlers-Danlos Syndrome, EDS](https://www.mitoaction.org/glossary/ehlers-danlos-syndrome-eds/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It is an inherited condition that affects the connective tissue of the body. Connective tissues are responsible for structuring and supporting the skin, blood vessels, bones and organs. Connective tissues are made up of cells, fibrous material and a protein called collagen. --- ### [Electroencephalogram (EEG)](https://www.mitoaction.org/glossary/electroencephalogram-eeg/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A test that detects in your brain using electrodes on your scalp. --- ### [Electromyography (EMG)](https://www.mitoaction.org/glossary/electromyography-emg/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A diagnostic procedure to assess the health of muscle and nerve cells that control each. --- ### [Electroretinogram](https://www.mitoaction.org/glossary/electroretinogram/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A diagnostic test that measures the electrical activity of the retina in response to a light stimulus. --- ### [Dysarthria](https://www.mitoaction.org/glossary/dysarthria/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A motor speech disorder in which the muscles that are used to produce speech are damaged, paralyzed, or weakened. Patients with this condition cannot control their tongue or voice and may slur their words. --- ### [Dopamine](https://www.mitoaction.org/glossary/dopamine/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A neurotransmitter in the brain, acting as a chemical messenger between neurons. it is released when your brain is expecting a reward. --- ### [DRESS](https://www.mitoaction.org/glossary/dress/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An allergic reaction to medication. This reaction is characterization by fever, rash, abnormal blood tests and swollen lymph nodes. --- ### [Dravet Syndrome (myoclonic seizure of infancy)](https://www.mitoaction.org/glossary/dravet-syndrome-myoclonic-seizure-of-infancy/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An epilepsy syndrome, that begins in infancy or early childhood and can include a spectrum of symptoms ranging from mild to severe --- ### [Duchenne Muscular Dystrophy (DMD)](https://www.mitoaction.org/glossary/duchenne-muscular-dystrophy-dmd/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A genetic disorder characterized by progressive muscle degeneration and weakness due to alterations of a protein called dystrophin that keeps muscle cells intact. --- ### [Dupixent](https://www.mitoaction.org/glossary/dupixent/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An injectable used to treat a number of inflammatory conditions. it works to inhibit the inflammatory response by binding to a protein that causes inflammation. --- ### [Dominant](https://www.mitoaction.org/glossary/dominant-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A gene from either parent which can express a disease. --- ### [Depression](https://www.mitoaction.org/glossary/depression/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It is a mood disorder that causes a persistent feeling of sadness and loss of interest. --- ### [DHA supplement](https://www.mitoaction.org/glossary/dha-supplement/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An Omega -3 supplement that is linked to improved heart health, better vision, and reduced inflammatory response. --- ### [DNA methylation](https://www.mitoaction.org/glossary/dna-methylation/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This process often inhibits the expression of certain genes. --- ### [Growth Retardation](https://www.mitoaction.org/glossary/growth-retardation/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") When the fetus does not develop at a normal rate. --- ### [Docosahexaenoic Acid (DHA)](https://www.mitoaction.org/glossary/docosahexaenoic-acid-dha/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An Omega -3 fatty acid found in cold water, fatty fish. --- ### [Crohn's Disease](https://www.mitoaction.org/glossary/crohns-disease/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A type of inflammatory bowel disease. It causes inflammation of the digestive tract. Which can lead to abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition. --- ### [Cluster Headaches](https://www.mitoaction.org/glossary/cluster-headaches/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") They occur in cyclic patterns patterns or cluster periods. They are one of the most painful types of headaches. That commonly wake you up in the middle of the night; with intense pain in or around one eye on one side of your head. --- ### [Contracture](https://www.mitoaction.org/glossary/contracture/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Normally stretchy tissues are replaced by non stretchy fiber-like tissue tissue. The tissue makes it harder to stretch the area and therefore preventing normal movement. --- ### [Croen](https://www.mitoaction.org/glossary/croen/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A prescription medication used to treat people who cannot digest food normally because their pancreas does not make enough enzymes. --- ### [De Novo mutation](https://www.mitoaction.org/glossary/de-novo-mutation/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A mutation that is present for the first time in one family member as the result of a mutation in a germ cell of one of the parents or a variant that arises in the fertilized egg itself during early embryogenesis. --- ### [Cromolyn](https://www.mitoaction.org/glossary/cromolyn/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It is used to treat symptoms of mastocytosis. The product is available as a solution. --- ### [Ceramide levels](https://www.mitoaction.org/glossary/ceramide-levels/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Complex lipids that play a central role in cell membrane integrity, the cellular stress response, inflammatory signaling and apoptosis. --- ### [Ceruloplasmin](https://www.mitoaction.org/glossary/ceruloplasmin/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A protein made in the liver that stores and carries the mineral copper throughout the body. --- ### [Chronic Pulmonary Aspiration](https://www.mitoaction.org/glossary/chronic-pulmonary-aspiration/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The repeated passage of food material, gastric reflux, and/or salvia in the subglottic airways that causes chronic or recurrent respiratory symptoms. --- ### [Central Line (Central venous catheter](https://www.mitoaction.org/glossary/central-line-central-venous-catheter/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It is similar to a regular intravenous (IV) line but this is much longer. It goes all the way up to a vein near or just inside the heart. --- ### [Charcot-Marie Tooth Disease (CMTD)](https://www.mitoaction.org/glossary/charcot-marie-tooth-disease-cmtd/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A group of inherited disorders that cause nerve damage. the damage occurs mainly in the arms and legs. The disease results in smaller, weaker muscles with loses in sensations, muscle contractions, and difficulty walking. Foot deformities like hammertoes and high arches are common. --- ### [Chronic Variable Immune Deficiency (CVID)](https://www.mitoaction.org/glossary/chronic-variable-immune-deficiency-cvid/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An immune system impairing disorder. Patients with this disorder are highly susceptible to recurrent infections; especially in the lungs, sinuses and ears. --- ### [Basal Ganglia](https://www.mitoaction.org/glossary/basal-ganglia/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A group of structures in the base of the brain. That are primarily responsible for motor control, motor learning, executive function, behavior, and emotions. --- ### [Cecostomy Tube surgery](https://www.mitoaction.org/glossary/cecostomy-tube-surgery/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The insertion of an artificial tube from the skin of the abdomen through to the cecum which is the entrance to the large intestines. A couple of weeks after the procedure the surgeon places either a Chait-trapdoor or MIC-key button which needs to be changed about twice a year. --- ### [Cecostomy](https://www.mitoaction.org/glossary/cecostomy/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A non-latex tube or catheter placed in the first part of the large intestine (cecum). If your child has a constant problem with constipation or the soiling of their pants could be why the C-tube is suggested. --- ### [Autosomal recessive (AR) inheritance](https://www.mitoaction.org/glossary/autosomal-recessive-ar-inheritance/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") When a genetic condition is caused by changes to both of someone’s copies of a gene. Autosomal conditions do not include the X or Y chromosome. --- ### [B- type Natriuretic peptide (BNP, NT-ProBNP)](https://www.mitoaction.org/glossary/b-type-natriuretic-peptide-bnp-nt-probnp/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Gives information on how heart is functioning/ pumping. Protein measured to diagnose or rule out heart failure. --- ### [BARTH syndrome](https://www.mitoaction.org/glossary/barth-syndrome/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A rare, genetic disorder of lipid metabolism that primarily affects males. --- ### [c16 Palmitate](https://www.mitoaction.org/glossary/c16-palmitate/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A fatty acid with a 16-carbon chain. It is the most common saturated fatty acid found in animals. plants and microorganisms. --- ### [Asparagine](https://www.mitoaction.org/glossary/asparagine/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A beta-amido derivative of aspartic acid and plays an important role in the biosynthesis of glycoprotein. --- ### [Apraxia of Speech](https://www.mitoaction.org/glossary/apraxia-of-speech/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An uncommon speech disorder in which a child has difficulty making accurate movements when speaking. --- ### [Rhabdomyolysis](https://www.mitoaction.org/glossary/rhabdomyolysis/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Breakdown of muscle tissue, releasing muscle fiber contents into the blood, with complex and potentially fatal consequences. Muscle contents are harmful to the kidney; rarely, permanent muscle damage can also occur. Results most often from physical injury, but can also be caused by some mitochondrial and related metabolic disorders, sometimes triggered by infection, toxins and/or exercise. --- ### [Vitamin B6 (Pyridoxine)](https://www.mitoaction.org/glossary/vitamin-b6-pyridoxine/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A B vitamin that assists in amino acid and fatty acid metabolism and red blood cell production. It is essential for normal brain development and keeping the nervous and immune system healthy. --- ### [AST/ALT](https://www.mitoaction.org/glossary/ast-alt/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") ALT stands for alanine transaminase which i another type of liver enzyme. If you have high levels of AST and or ALT it may mean that you have some type of liver damage. --- ### [Autosomal dominant (AD) inheritance](https://www.mitoaction.org/glossary/autosomal-dominant-ad-inheritance/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") When a genetic condition is caused by a change to one of someone’s two copies of a gene. Autosomal conditions do not include the X or Y chromosome. --- ### [Symptomatic treatment](https://www.mitoaction.org/glossary/symptomatic-treatment-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Treatment aimed at relieving a symptom rather than fixing the root cause of that symptom. --- ### [Cardiology](https://www.mitoaction.org/glossary/cardiology/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The branch of medicine focusing on the heart and circulatory system --- ### [Alpha lipoic acid](https://www.mitoaction.org/glossary/alpha-lipoic-acid/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A small, vitamin-like organic molecule,made in the mitochondria, and found in every cell. It plays multiple essential roles. It is a necessary co-factor for the activity of five different enzyme complexes, in processes including aerobic respiration. As a strong anti-oxidant, it stabilizes and protects multiple cell components from oxidation. It is sometimes used as a supplement that may help patients with mitochondrial and other diseases. --- ### [Vitamin B1 (Thiamine)](https://www.mitoaction.org/glossary/vitamin-b1-thiamine/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A critical B vitamin that supports energy metabolism and nerve function. --- ### [Vitamin B12 (Cobalamin)](https://www.mitoaction.org/glossary/vitamin-b12-cobalamin/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A B vitamin that plays an essential role in red blood cell formation, cell metabolism, nerve function, and the production of DNA. --- ### [Vitamin B2 (Riboflavin)](https://www.mitoaction.org/glossary/vitamin-b2-riboflavin/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It is a type of vitamin B. It works alongside other B vitamins to support energy metabolism, help red blood cell production, and aid in the release of energy from proteins. --- ### [Autonomic Dysreflexia](https://www.mitoaction.org/glossary/autonomic-dysreflexia/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A potentially life-threatening condition of the autonomic nervous system following spinal cord injury to the chest or neck. A common presentation is sudden increase in blood pressure accompanied by symptoms including cardiac arrhythmia, blurred vision, and intense headache. Mitochondrial dysfunction is a well known follow-on after spinal cord injury; conversely, enhancement of mitochondrial health shows promise as a treatment. --- ### [Ophthalmoplegia](https://www.mitoaction.org/glossary/ophthalmoplegia/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Paralysis or weakness of the eye muscles. A common symptom in some kinds of mitochondria disease --- ### [Visceral Hyperalgesia](https://www.mitoaction.org/glossary/visceral-hyperalgesia/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Heightened perception of pain in internal organs such as the stomach, pancreas or intestines. Frequently seen in patients with so-called functional gastrointestinal disorders, including those with mitochondrial disease. --- ### [Zinc](https://www.mitoaction.org/glossary/zinc/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A metallic chemical element and essential trace nutrient with countless functions, in the mitochondria and elsewhere. For example, it is a cofactor in over 200 enzyme reactions including DNA and protein synthesis, and part of the structure of many proteins. Zinc deficiency can cause many disorders, including impaired immune function, loss of appetite, and growth retardation. Zinc excess is also harmful. --- ### [Variant of Unknown Significance (VUS)](https://www.mitoaction.org/glossary/variant-of-unknown-significance-vus/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A DNA mutation (variant) whose contribution to a genetic disease, if any, is uncertain. There is usually not enough information about a variant of uncertain significance to know whether it increases a person’s risk of developing a disease. --- ### [Vitamin C (Ascorbic acid)](https://www.mitoaction.org/glossary/vitamin-c-ascorbic-acid/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A water-soluble vitamin that is needed for growth and repair in all parts of the body. Also serves as an antioxidant. --- ### [Creatine Kinase, CK (formerly called Creatine Phosphokinase, CPK)](https://www.mitoaction.org/glossary/creatine-kinase-ck-formerly-called-creatine-phosphokinase-cpk/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A set of related enzymes most abundant in the heart, brain, skeletal muscle and other tissues with high energy requirements. CK is critical in maintaining a constant concentration of ATP under conditions of high expenditure of ATP energy, and is ordinarily contained entirely within the muscle. If the heart or other muscle is damaged, CK will be released into the blood. Blood levels of CK, formerly used as a heart attack indicator, have been replaced by levels of troponin. --- ### [Dronabinol](https://www.mitoaction.org/glossary/dronabinol/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A man made compound that contains cannabinoids found in the marijuana plant. --- ### [Sepsis](https://www.mitoaction.org/glossary/sepsis/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A potentially life threatening condition that occurs when the body’s own extreme immune response to an infection or injury damages its own tissues. Also called blood poisoning or septicemia. Patients receiving intravenous nutrition are at elevated risk. --- ### [Steatosis](https://www.mitoaction.org/glossary/steatosis/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Fatty liver disease, resulting from accumulation of fat in the liver. The two main kinds are Nonalcoholic fatty liver disease (NAFLD) and alcohol related fatty liver disease (ALD). Mitochondrial dysfunction contributes to the disease process in both. --- ### [Tourette's Syndrome](https://www.mitoaction.org/glossary/tourettes-syndrome/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Familial neurological disorder of variable expression that is characterized by recurrent involuntary tics involving body movements or vocalizations. Mitochondrial mutations may contribute to this disorder --- ### [Serous](https://www.mitoaction.org/glossary/serous/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Resembling serum; filled with serum --- ### [Serum](https://www.mitoaction.org/glossary/serum/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Clear liquid part of blood, with blood cells and clotting proteins removed. --- ### [DEXA scan](https://www.mitoaction.org/glossary/dexa-scan/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A type of medical imaging test that uses very low levels of x-rays to measure how dense your bones are. --- ### [Pryruvate (Pyruvic acid)](https://www.mitoaction.org/glossary/pryruvate-pyruvic-acid/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Product of the first step in the production of chemical energy from glucose (glycolysis). Enters the mitochondrion for further energy extraction via oxidative phosphorylation. A high ratio of lactate to pyruvate level in the blood can be caused by mitochondrial dysfunction. --- ### [Ptosis](https://www.mitoaction.org/glossary/ptosis/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Drooping of the upper eyelid to some degree over the eye, in one or both eyes. A common symptom of mitochondrial disease. --- ### [Pulse Oximeter (Pulse Ox)](https://www.mitoaction.org/glossary/pulse-oximeter-pulse-ox/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A device clipped onto a finger, toe, ear, etc., that shines a light beam through the body part and uses the amount of light emerging to determine the percent oxygen saturation of your blood. If you have dark skin, the reading can be inaccurate. --- ### [Rapamycin](https://www.mitoaction.org/glossary/rapamycin/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An organic compound produced by a species of soil bacteria, belonging to a class of compounds originally described as antibiotics. Later discovered to have potent antitumor and immunosuppressive activity. Now used mainly to prevent rejection in organ transplantation and to treat certain types of cancer. --- ### [Retinitis Pigmentosa (RP)](https://www.mitoaction.org/glossary/retinitis-pigmentosa-rp/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A group of rare genetic diseases in which the cells of the retina break down slowly over time, causing loss of vision. Typically starts in childhood, often progresses to complete blindness. Many different kinds of gene mutation can lead to it. Often only the eyes are affected, but sometimes it is part of a broader syndrome. An example is the mitochondrial disorder Neuropathy, Ataxia, Retinitis Pigmentosa Syndrome (NARP), which can present with an array of neurological symptoms. --- ### [Ophthalmology](https://www.mitoaction.org/glossary/ophthalmology/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The branch of medicine focusing on the eye. Ophthalmologists are MDs qualified to diagnose all forms of eye diseases and perform surgery and other procedures on the eye. --- ### [Pathogenic](https://www.mitoaction.org/glossary/pathogenic/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Causing disease. Often used in reference to harmful DNA mutations. --- ### [Optometrist](https://www.mitoaction.org/glossary/optometrist/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Health provider with doctoral degree (Doctor of Optometry). An optometrist can diagnose many eye diseases and vision problems, and prescribe many of the most common treatments, including corrective lenses. --- ### [Otitis](https://www.mitoaction.org/glossary/otitis/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Inflammation or infection of the inner ear (behind the eardrum) --- ### [Peripherally Inserted Central Catheter (PICC)](https://www.mitoaction.org/glossary/peripherally-inserted-central-catheter-picc/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A long thin tube entering the body through the arm or leg and opening internally near the big vein next to the heart. Used to deliver liquid nutrition, chemotherapy, antibiotics, etc. --- ### [Port](https://www.mitoaction.org/glossary/port/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A device for delivering liquid nutrition or treatments into the circulatory system, consisting of a small receiving chamber implanted under skin of the chest, connected to a narrow tube that empties into a vein. Treatments are introduced via a hypodermic needle piercing the skin and emptying into the receiving chamber (septum). --- ### [Proprioception (Kinesthesia)](https://www.mitoaction.org/glossary/proprioception-kinesthesia/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The body’s ability to sense its location, movements, and actions without the need for conscious thought. It is based continuous reporting from countless sensory receptors throughout the muscles, tendons and other body regions, integrated by the central nervous system. --- ### [Coffin Siris Syndrome](https://www.mitoaction.org/glossary/coffin-siris-syndrome/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A genetic condition that uses variable degrees of learning disabilities, developmental delays, underdeveloped “pinky” toenails or fingernails and distant facial features. --- ### [Myalgia](https://www.mitoaction.org/glossary/myalgia/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Strictly speaking, pain in the muscles. Often broadened to include ligaments and tendons, the soft tissue that connects muscles to bones and other body parts. --- ### [Nephrology](https://www.mitoaction.org/glossary/nephrology/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The medical specialty focusing on the kidneys. --- ### [Neurology](https://www.mitoaction.org/glossary/neurology/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Medical specialty focusing on disorders of the nervous system. --- ### [Neutropenia](https://www.mitoaction.org/glossary/neutropenia/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An abnormally low number of neutrophils, an abundant type of white blood cell that constitutes the first line of defense against microbes that enter the body. It is characteristic of some forms of mitochondrial disease. --- ### [Nutritionist](https://www.mitoaction.org/glossary/nutritionist/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Someone who gives advice related to nutrition. Depending on the state, nutritionists may or may not be licensed healthcare providers and the level of training needed to be called a nutritionist varies. --- ### [Heteroplasmy](https://www.mitoaction.org/glossary/heteroplasmy-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Applies to variants in mitochondrial DNA. Homoplasmy is the presence of only one variant, in a given mitochondrial gene, in an individual. Heteroplasmy is the presence in an individual of two more variants of the same gene. The degree of heteroplasmy in an individual is the relative frequency of the “normal” variant versus that of the mutant variant. --- ### [Hypoglycemia](https://www.mitoaction.org/glossary/hypoglycemia-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Low blood sugar. --- ### [Lennox Gastaut Syndrome](https://www.mitoaction.org/glossary/lennox-gastaut-syndrome/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") severe form of epilepsy that is common among epileptic mitochondrial disease patients. Typically becomes apparent during infancy or early childhood, the most-encountered types being atonic, tonic, and atypical absence seizures --- ### [Multiple Acyl-CoA Dehydrogenase Deficiency](https://www.mitoaction.org/glossary/multiple-acyl-coa-dehydrogenase-deficiency/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This condition reduces the body’s ability to obtain energy from protein and fats. Due to defect in the electron transfer flavoprotein or electron transfer flavoprotein dehydrogenase. --- ### [Irritable Bowel Syndrome (IBS)](https://www.mitoaction.org/glossary/irritable-bowel-syndrome-ibs/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A difficult- to- define/diagnose disorder characterized by abdominal pain and altered bowel habit (diarrhea, constipation, or both, either mixed or in alternation). Relatively common – perhaps 5-10% of the population, but with causes little understood – no clear biomarkers. Mitochondrial dysfunction may be a contribution factor. --- ### [L-carnitine (Levocarnitine)](https://www.mitoaction.org/glossary/l-carnitine-levocarnitine/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A small molecule, derived from amino acids, that helps transports long-chain fatty acids into the mitochondrion where they can be oxidized to produce chemical energy. Its other functions include removal of metabolic waste products from the mitochondrion. Concentrated in heart and skeletal muscle --- ### [Hepatorenal Syndrome](https://www.mitoaction.org/glossary/hepatorenal-syndrome/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A serious complication of cirrhosis of the liver. Marked by degeneration of cells, inflammation, and fibrous thickening of the liver tissue, with a critically poor diagnosis. The medical hallmark is severe renal constriction of blood vessels. This results in a complex change of the blood supply of the gastrointestinal tract, liver, splen, and pancreas. Mitochondrial dysfunction appears to be part of the disease process. --- ### [Functional Neurological Disorder](https://www.mitoaction.org/glossary/functional-neurological-disorder/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Presence of neurological symptoms in the absence of any supporting physical evidence, which cannot be explained by any known neurological or other disease. The term is often used in dismissing a patient’s complaints as purely psychological in origin. --- ### [Genitourinary](https://www.mitoaction.org/glossary/genitourinary/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Relating to the genital and urinary organs. --- ### [HELLP Syndrome](https://www.mitoaction.org/glossary/hellp-syndrome/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A life threatening pregnancy complication usually considered to be a variant of preeclampsia. HELLP stands for Hemolysis (which is the breaking down of red blood cells), Elevated liver enzymes and a low platelet count. It can lead to serious blood and liver problems. Impaired mitochondrial function may contribute to this condition. --- ### [Hepatology](https://www.mitoaction.org/glossary/hepatology/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A medical discipline focused on diagnosis, treatment and management of problems in the liver, gallbladder, bile ducts and pancreas. --- ### [Dystonia](https://www.mitoaction.org/glossary/dystonia/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A complex movement disorder in which the muscles contract involuntarily, often causing repetitive or twisting movements. There many different kinds and causes. Most originate in a deep part of the brain called the basal ganglia. Dystonia is one of the movement disorders common in mitochondrial disease. --- ### [Dysphagia](https://www.mitoaction.org/glossary/dysphagia/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The medical term for difficulty in swallowing. Dysphagia is associated with several types of mitochondrial disease. --- ### [Endocrinology](https://www.mitoaction.org/glossary/endocrinology/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Medical specialty focused on disrders of the the endocrine system, which consists of multiple glands that secrete hormones, chemical messengers that regulate the function of all body organs including each other. Diabetes mellitus is an example of an endocrine disease common in mitochondrial disease patients. --- ### [Fluoroquinolone](https://www.mitoaction.org/glossary/fluoroquinolone/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A class of antibiotics that are highly effective at killing bacteria by preventing bacterial DNA replication, but are also capable of seriously harming mitochondria, which have DNA replication similar to that of bacteria. --- ### [Free Radicals](https://www.mitoaction.org/glossary/free-radicals/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Unstable, highly-reactive atoms or molecules, generated in living organisms by metabolic reactions, mainly in the mitochodrion. These can damage DNA, proteins and other molecules, in the mitochondria and elsewhere. They are thought to underlie much of the aging process. --- ### [Dementia](https://www.mitoaction.org/glossary/dementia-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Loss of cognitive functioning — thinking, remembering, and reasoning — to the extent that it interferes with a person’s daily life --- ### [CPAP Machine](https://www.mitoaction.org/glossary/cpap-machine/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Continuous Positive Airway Pressure machine. Sends a steady flow of air into the nose and mouth, to keep airways open and breathing normal while you sleep. --- ### [Dextrose](https://www.mitoaction.org/glossary/dextrose/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Equivalent to glucose. Glucose, the most common sugar and the main source of energy in our bodies, can exist in two forms, D and L. These have identical chemical properties but whose physical structures are mirror images of one another. D-glucose, the natural-occurring form, is also called dextrose. --- ### [Dichloroacetate](https://www.mitoaction.org/glossary/dichloroacetate/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Investigational drug for treatment of mitochondrial disease. A small inorganic molecule that increases the rate of oxidative phosphorylation, the main pathway by which the energy in food is converted to the form used by the body (ATP). It does this by inhibiting the enzyme that diverts food energy to an alternative pathway that leads instead to the build-up of lactic acid. --- ### [Conversion Disorder](https://www.mitoaction.org/glossary/conversion-disorder/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Also called Functional Neurological Disorder, in which neurological symptoms occur, such as paralysis, numbness, blindness, deafness or seizures, without obvious underlying neurologic pathology. The cause is then typically taken to be psychological. Patients who actually turn out to have chronic organic diseases, such as mitochondrial disease, are regularly mis-diagnosed as having only conversion disorder or other psychological problems. --- ### [Dietitian, Registered Dietitian](https://www.mitoaction.org/glossary/dietitian-registered-dietitian/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A licensed healthcare provider who specializes in nutrition and its effect on health. --- ### [Cognitive decline](https://www.mitoaction.org/glossary/cognitive-decline-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Term used to describe trouble with memory, slower thinking skills, loss of awareness and judgment. --- ### [Cofactor](https://www.mitoaction.org/glossary/cofactor/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A substance other than a protein whose presence is required for the biological activity of an enzyme or other protein to occur. For example, many enzymes will only work in the presence of magnesium ions. --- ### [Chronic Intestinal Pseudo-Obstruction; sometimes included under intestinal dysmotility.](https://www.mitoaction.org/glossary/chronic-intestinal-pseudo-obstruction-sometimes-included-under-intestinal-dysmotility/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Impairment of the muscle contractions that move food through the digestive tract, leading to buildup of partially digested food in the intestines despite the absence of a physical blockage. Associated with mitochondrial disease and related chronic ailments. Often viewed skeptically by doctors. Treatment sometimes requires enteral (into the intestine) or parenteral (into the bloodstream) feeding. --- ### [Clonidine](https://www.mitoaction.org/glossary/clonidine/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Drug that lowers blood pressure and heart rate by relaxing the walls of arteries. It is used to treat high blood pressure as well as other conditions including ADHD, Tourette’s Syndrome and Restless Leg Syndrome. --- ### [Coenzyme](https://www.mitoaction.org/glossary/coenzyme/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A relatively small organic (i.e., carbon-containing) molecule whose presence is required in order for the biological activity of an enzyme to occur. Thus, coenzymes are a particular kind of cofactor. Many coenzymes are vitamins or derivatives thereof, and vice versa. Coenzymes are involved in a huge number of reactions catalyzed by enzymes. --- ### [Coenzyme Q10](https://www.mitoaction.org/glossary/coenzyme-q10/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A relatively small fat-soluble organic (i.e., carbon-containing) molecule, found in membranes throughout the in the body. It readily transports both electrons and protons. Its many essential functions are still being discovered. In oxidative phosphorylation, the main chemical pathway by which food is converted into energy, it carries electrons from Complexes I and II to Complex III. It is a strong anti-oxidant, it serves to protect many cell components from destructive oxidation. It is often included in “mito cocktails” to help alleviate the symptoms of mitochondrial disease --- ### [Chromosome](https://www.mitoaction.org/glossary/chromosome-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A chromosome, as found in the nucleus of animals and other eukaryotes, is a thread-like structureconsisting of a long single strand of DNA that is coated with proteins, mainly of the kind called histones. The DNA in chromosomes is the genetic material of the cell. --- ### [Choline](https://www.mitoaction.org/glossary/choline/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A small organic molecule similar to an amino acid, and an essential nutrient with many functions. Among these are: Precursor for cell components including the neurotransmitter acetylcholine. Necessary for the synthesis of phospholipid components of cell membranes. Some but not enough made in the body, so dietary intake also required. A diet deficient in choline harms mitochondria. --- ### [Chiari Malformation](https://www.mitoaction.org/glossary/chiari-malformation/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An abnormality of the skull which results in part of the brain extending into the spinal canal, causing a variable array of symptoms, some severe. It has been linked to mitochondrial dysfunction. --- ### [Chorea](https://www.mitoaction.org/glossary/chorea/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A movement disorder that causes sudden, unintended, and uncontrollable jerky movements of the limbs and facial muscles. The immediate cause is overactivity of the chemical dopamine in the areas of the brain that control movement. Occurs as part of many underlying diseases, including multiple forms of mitochondrial disease. --- ### [Borderline low plasma Alpha Amino Acid Butyric Acid](https://www.mitoaction.org/glossary/borderline-low-plasma-alpha-amino-acid-butyric-acid/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An intermediate occurring in the catabolism of two essential amino acid methionine and threonine. Possible increased need for the nutrients which aid in threonine metabolism from which this AA id derived. --- ### [Chorioretinopathy](https://www.mitoaction.org/glossary/chorioretinopathy/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A condition in which fluid accumulates under the retina, causing a fluid filled detachment and vision loss. Mitochondria appear to contribute to the disease process. --- ### [Cardiomyopathy](https://www.mitoaction.org/glossary/cardiomyopathy-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An abnormal condition of the heart muscle. Occurs in some kinds of mitochondrial disease. --- ### [Cardiac Arrhythmia (Irregular heartbeat)](https://www.mitoaction.org/glossary/cardiac-arrhythmia-irregular-heartbeat/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Irregular rate or rhythm of the heartbeat. Can be fatal. Mitochondrial dysfunction appears to play an important role in arrthymias --- ### [Cardiopulmonary Exercise test (CPET)](https://www.mitoaction.org/glossary/cardiopulmonary-exercise-test-cpet/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A non-invasive method used to assess the performance of the heart and lungs at rest and during exercise. --- ### [Carrier (of disease-causing mutation)](https://www.mitoaction.org/glossary/carrier-of-disease-causing-mutation/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A person who has one copy of a recessive pathogenic variant and one copy of the corresponding normal variant. The potentially harmful variant can be passed on to offspring, but the “carrier” is not affected by it this is the definition of “recessive”. An offspring, however, will show disease if it inherits two copies of the pathogenic variant, one from each parent. --- ### [Cerebrospinal fluid (CSF)](https://www.mitoaction.org/glossary/cerebrospinal-fluid-csf/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The fluid surrounding the brain and spinal cord, inside the tough membrane called the dura mater. --- ### [Bilirubin](https://www.mitoaction.org/glossary/bilirubin/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A yellowish pigment made during the normal breakdown of red blood cells, and removed by the liver. Higher than normal blood levels of bilirubin can reflect dysfunction in the liver, bile duct or elsewhere. --- ### [Biomarker](https://www.mitoaction.org/glossary/biomarker/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An objectively determinable property of an organism that is useful in detecting a particular biological state or condition. For example, the presence of human chorionic gonadotropin (HCG) hormone in the urine is a reliable indicator of pregnancy because it is produced only during pregnancy. A biomarker invariably indicative of a particular disorder is said to be pathognomonic for that disorder. --- ### [Bradycardia](https://www.mitoaction.org/glossary/bradycardia/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A slower than normal heart rate, usually defined as fewer than 60 beats per minute. Bradycardia occurs in some forms of mitochondrial disease --- ### [Cachexia](https://www.mitoaction.org/glossary/cachexia/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Multi-system syndrome that includes loss of weight, muscle mass and appetite; insulin resistance, systemic inflammation and functional decline. Seen in advanced cancer and some chronic diseases. Often followed by death. Mitochondrial dysfunction is an early part of the progression, and a potential target for arresting it. --- ### [BiPAP (Bilevel Positive Airway Pressure) ventilation](https://www.mitoaction.org/glossary/bipap-bilevel-positive-airway-pressure-ventilation/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A form of non-invasive ventilation which provides positive air pressure to help with inhalation, plus an adjustable different pressure during exhalation, to accommodate possible weakness of muscles used in breathing out, which is common in mitochondrial disease. In contrast, CPAP provides only single constant pressure. --- ### [C-Diff (Clostridioides difficile)](https://www.mitoaction.org/glossary/c-diff-clostridioides-difficile/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A highly contagious bacterium infecting the large intestine, that can cause symptoms ranging from diarrhea to life threatening inflammation of the colon. Typically occurs after antibiotic use has killed the normally resident bacteria, most commonly in hospitals or long-term care facilities. --- ### [Baclofen](https://www.mitoaction.org/glossary/baclofen/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Drug derived from a naturally-occurring, calming brain neurotransmitter, used to treat muscle spasticity resulting from neuromuscular disorders including mitochondrial disease. --- ### [Behcet's Syndrome](https://www.mitoaction.org/glossary/behcets-syndrome/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A complex, multisystemic, autoimmune and/or autoinflammatory disease in which the underlying problem is inflammation of the blood vessels. The most common symptoms are oral and genital sores. Any system, including the ocular, cardiovascular, renal, gastrointestinal, pulmonary, urologic, and central nervous system, can become involved. Can produce stroke-like symptoms due to demyelination of areas in the brain. 0/5 stars, not recommended. --- ### [Autoimmunity](https://www.mitoaction.org/glossary/autoimmunity/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The immune responses of an organism against its own healthy cells, tissues and other normal body constituents. Specifically, the presence of antibodies or T cells that react with the body’s own proteins. A low level of self-reactivity is normal and possibly beneficial, but becomes autoimmune disease if it leads to tissue damage. Many diseases are now known to be autoimmune, including type 1 diabetes, multiple sclerosis, rheumatoid arthritis and lupus. In type 1 diabetes, the body’s own immune cells destroy the insulin-secreting cells in the pancreas. Mitochondrial dysfunction appears to play a major role in autoimmune disease. --- ### [Bicarbonate](https://www.mitoaction.org/glossary/bicarbonate/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The dissolved form of CO2, a main by-product of converting food to energy. Abnormal levels of bicarbonate in the blood, both high and low, can be markers for several types of illness. --- ### [Bicitra (sodium citrate)](https://www.mitoaction.org/glossary/bicitra-sodium-citrate/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A medicine used to treat high acidity of the blood and/urine, a common problem in mitochondrial disease. In the body it is converted to sodium bicarbonate, a standard alkalizing agent. --- ### [Bilious Vomit](https://www.mitoaction.org/glossary/bilious-vomit/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Vomitus is typically clear or slightly yellowish. Vomit the color of bile (green, yellow or a mixture of the two) strongly suggests an intestinal blockage, because bile, which is ordinarily released into the small intestine, does not usually move upstream in the digestive tract. --- ### [Apoptosis](https://www.mitoaction.org/glossary/apoptosis/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The well-regulated process of programmed, intentional cell death. It allows for controlled removal of cells that are either defective or diseases, or are no longer needed and due to be replaced as a part of development or injury repair. The main apoptosis pathway involves the mitochondria. --- ### [Ataxia](https://www.mitoaction.org/glossary/ataxia/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Impaired coordination of voluntary muscle movements. Manifestations can include, among others, slurred speech, poor balance, unsteady walking, falling, and involuntary eye movements (nystagmus). Usually results from dysfunction of the cerebellum, the brain region responsible for coordinating movements, due to injury or to genetic disease including many forms of mitochondrial disease. --- ### [Audiology](https://www.mitoaction.org/glossary/audiology/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The branch of medicine focusing on hearing. Providers have a Doctor of Audiology degree. Hearing loss occurs in multiple types of mitochondrial disease. --- ### [Antigen](https://www.mitoaction.org/glossary/antigen/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An object or substance that causes the immune system to produce specific antibodies against it. Examples include particular chemicals, bacteria, viruses --- ### [Antinuclear Antibodies (ANA)](https://www.mitoaction.org/glossary/antinuclear-antibodies-ana/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Antibodies made by the body that attack molecules, including DNA and proteins, in the body’s own cell nuclei. This is a form of autoimmunity, and can grievously harm healthy cells and tissue, though it does not always do so. Testing for presence of ANAs is part of diagnosing autoimmune diseases. --- ### [Antispasmodics](https://www.mitoaction.org/glossary/antispasmodics/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Drugs that can suppress muscle spasms. Some antispasmodics are better for spasms in smooth muscle (for example that in the digestive tract), others for skeletal muscle spasms. --- ### [Amniotic fluid](https://www.mitoaction.org/glossary/amniotic-fluid-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The fluid that surrounds a baby during gestation. The amnion is a membrane that grows to envelop the embryo early in its development, becoming the amniotic sac as the space between it and the embryo gets filled with amniotic fluid. --- ### [Anemia](https://www.mitoaction.org/glossary/anemia/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A reduced number of oxygen-carrying red blood cells in the blood. The resulting lower availability of oxygen can make you feel tired and weak. Mitochondrial dysfunction appears to play a role in some forms of anemia. --- ### [Angelman Syndrome](https://www.mitoaction.org/glossary/angelman-syndrome/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A genetic disorder primarily affecting the nervous system. Characteristic symptoms include delayed development, intellectual disability, severe speech impairment, and problems with movement and balance. It results from various defects in a gene critical to protein recycling. Mitochondrial dysfunction appears to be part of the disease process. --- ### [Anhidrosis](https://www.mitoaction.org/glossary/anhidrosis/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A rare condition in which the sweat glands secrete little or no sweat. One cause is dysautonomia, i.e., dysfunction of the autonomic nervous system, which regulates involuntary/ unconscious physiological processes. Dysautonomia is common in mitochondrial disease patients, and abnormal sweating patterns are found in some. --- ### [Antibody](https://www.mitoaction.org/glossary/antibody/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A blood protein, made by plasma cells (a type of white blood cell, part of the immune system), in response to and counteracting a specific antigen (object or substance). --- ### [Amyotrophic lateral sclerosis (ALS; Lou Gehrig's disease)](https://www.mitoaction.org/glossary/amyotrophic-lateral-sclerosis-als-lou-gehrigs-disease/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A progressive nervous system disease that affects nerve cells in the brain and spinal cord, causing nerve degeneration, muscle atrophy and loss of voluntary muscle control. Invariably fatal. Inherited in 5-10% of cases, otherwise cause unknown. Mitochondrial dysfunction seems to be a key part of the disease process. --- ### [Ankylosing Spondylitis AS)](https://www.mitoaction.org/glossary/ankylosing-spondylitis-as/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Autoimmune disorder affecting mainly the back. Belong to the group called rheumatic diseases, i.e., those affecting joints, tendons, ligaments, bones and muscles. Can result in eventual disabling fusion of some bones in the spine (vertebrae). Mitochondrial dysfunction probably contributes to the disease process. The HLA-B27 antigen is a strong risk factor, but the causes of AS are not well understood --- ### [Accommodations for disabilities, school and work](https://www.mitoaction.org/glossary/accommodations-for-disabilities-school-and-work/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Changes in procedures and expections that remove disability-caused barriers to learning, in school, and job performance, in the workplace. --- ### [Addison's Disease (Adrenal Insufficiency)](https://www.mitoaction.org/glossary/addisons-disease-adrenal-insufficiency/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Under-production by the adrenal glands of one or both of two steroid hormones, cortisol and aldosterone, which regulate many critical body processes. The typical cause is autoimmune. In rare cases, andrenal insufficiency can develop as part of mitochondrial disease. --- ### [Adenosine triphosphate (ATP)](https://www.mitoaction.org/glossary/adenosine-triphosphate-atp/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A small organic molecule, chemically related to DNA, sometimes called the currency of energy in the body. The energy-yielding breakdown of ATP powers nearly all energy-requiring processes in the cell, such as muscle contraction, growth, nerve signal transmission, and countless others. In turn, production of ATP uses energy extracted from food, obtained primarily through oxidative phosphorylation in the mitochondria. --- ### [Adenovirus](https://www.mitoaction.org/glossary/adenovirus/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A commonly-occurring group of viruses, first discovered in tonsils, that typically cause respiratory infections. --- ### [Age related Macular Degeneration (AMD)](https://www.mitoaction.org/glossary/age-related-macular-degeneration-amd/) **Published:** April 12, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Result of age-related damage to the macula, the functional center of the retina, by which you perceive what is directly in front of you. Mitochondrial dysfunction has been implicated in the disease process. --- ### [Abdominal aortic aneurysm](https://www.mitoaction.org/glossary/abdominal-aortic-aneurysm/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A weakening and bulge in the lower portion of the body’s main artery. Rupture of this and other kinds of aneuryms can be fatal. Mitochondrial dysfunction is now thought to contribute to formation of these aneurysms. --- ### [VUS Variant of Unknown Significance](https://www.mitoaction.org/glossary/vus-variant-of-unknown-significance/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") DNA mutations that has unknown mutations of disease causation. --- ### [X-linked dominant](https://www.mitoaction.org/glossary/x-linked-dominant/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") When a condition is caused by a change in a gene on one copy of the X chromosome and affects both males and females. For X-linked dominant conditions both males and females are affected if they have the genetic change at all. --- ### [X-linked recessive](https://www.mitoaction.org/glossary/x-linked-recessive/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") When a condition is caused by a change in a gene on the X chromosome but does not affect males and females the same way. Since men typically only have one X chromosome, X-linked recessive conditions typically affect men more severely than females or can cause fetal death in males. --- ### [Transient Ischemic Attack](https://www.mitoaction.org/glossary/transient-ischemic-attack/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A mini stroke or warning stroke caused by a clot causing a temporary blockage to blood flow in the brain with a quick onset. --- ### [Troponin](https://www.mitoaction.org/glossary/troponin/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Protein found in the muscles of the heart. The protein is released into the bloodstream when the heart muscle is damaged or injured. --- ### [Troponin Levels](https://www.mitoaction.org/glossary/troponin-levels/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Measuring your troponin levels can quickly tell your doctors whether your having a heart attack or are in heart failure. --- ### [Thymidine Kinase Type 2 Deficiency](https://www.mitoaction.org/glossary/thymidine-kinase-type-2-deficiency/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It is an enzyme deficiency defined by muscle weakness, difficulty breathing, and droopy or saggy eyelids. --- ### [Tocopheryl](https://www.mitoaction.org/glossary/tocopheryl/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An antioxidant in the cellular and organelle membrane. --- ### [Topamax](https://www.mitoaction.org/glossary/topamax/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The drug that helps to prevent headaches and treat epilepsy in adults and children with partial – onset seizures, generalized tonic-clonic seizures and seizures linked to Lennox-Gastaut Syndrome. --- ### [Thiamine](https://www.mitoaction.org/glossary/thiamine/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A critical supplement for carbohydrate metabolism. It is also in nucleic acid as a DNA base to indirectly synthesis. --- ### [Thrombosis](https://www.mitoaction.org/glossary/thrombosis/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") When a blood clot blocks a vein or artery. --- ### [Steroids](https://www.mitoaction.org/glossary/steroids/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The man-made version of hormones that are naturally made in the body. That are designed to act like hormones to reduce inflammation. --- ### [Stridor](https://www.mitoaction.org/glossary/stridor/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The output of the metabolism of glucose known as glycolysis. --- ### [Symptomatic treatment](https://www.mitoaction.org/glossary/symptomatic-treatment/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Treatments aimed at relieving a symptom someone is having rather than fixing the root cause of a symptom. --- ### [Seizures](https://www.mitoaction.org/glossary/seizures/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Episodes of abnormal electrical activity in the brain. --- ### [Spasticity](https://www.mitoaction.org/glossary/spasticity/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Abnormal muscle stiffness or muscle tone which can cause problems with movement and speech --- ### [Specialist](https://www.mitoaction.org/glossary/specialist/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A doctor that focuses on one branch of medicine. --- ### [Riboflavin](https://www.mitoaction.org/glossary/riboflavin/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It is a type of vitamin B. It helps in red blood cell production and aids in the release of energy from proteins. --- ### [Scleroderma](https://www.mitoaction.org/glossary/scleroderma-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A group of rare diseases that involve the hardening and tightening of the skin and connective tissues. --- ### [Preventricular contraction](https://www.mitoaction.org/glossary/preventricular-contraction-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Extra heartbeats that begin in one of the heart’s two lower pumping chambers (ventricles). --- ### [Pyridoxine](https://www.mitoaction.org/glossary/pyridoxine/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A supplement helps with neuropathy and is a component of neurotransmitter synthesis. --- ### [Pyruvate levels](https://www.mitoaction.org/glossary/pyruvate-levels/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The output of the metabolism of glucose known as glycolysis. --- ### [Renal Tubular Acidosis](https://www.mitoaction.org/glossary/renal-tubular-acidosis/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This disease occurs when the kidneys are damaged and cannot remove waste, called acid, from the blood. --- ### [Retinitis Pigmentosa](https://www.mitoaction.org/glossary/retinitis-pigmentosa/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The breakdown and loss of cells in the retina. Resulting in difficulty seeing at night and the loss of side vision. --- ### [Prophylactic implantable cardiovascular defibrillator](https://www.mitoaction.org/glossary/prophylactic-implantable-cardiovascular-defibrillator/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It treats potentially lethal cardiac arrhythmias in patients who have not previously experienced such but are at a considerable risk due to an underlying heart disease. --- ### [Proprioception](https://www.mitoaction.org/glossary/proprioception/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Difficulty having perception or awareness of the position and movement of the body. --- ### [Protein substrates](https://www.mitoaction.org/glossary/protein-substrates-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A substrate is a molecule upon which an enzyme acts. Enzyme catalyze chemical reactions involving the substrate. In a protein substrate reaction the substrate is a milk protein and the enzyme is rennin. --- ### [Pulse Ox](https://www.mitoaction.org/glossary/pulse-ox-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Pulse oximeter: A device used to measure arterial blood oxygenation. --- ### [POTS](https://www.mitoaction.org/glossary/pots/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It is a form of orthostatic intolerance. Symptoms of the condition occur upon standing up from a reclining position. The primary symptom of the intolerance is lightheadedness, fainting and an uncomfortable, rapid increase in the heartbeat. --- ### [prion-like molecules](https://www.mitoaction.org/glossary/prion-like-molecules/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Proteins that can fold incorrectly and cause damage to the brain. --- ### [Polymyositis](https://www.mitoaction.org/glossary/polymyositis-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An uncommon inflammatory disease that causes muscle weakness affecting both sides of your body. --- ### [Polyneuropathy](https://www.mitoaction.org/glossary/polyneuropathy-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This condition affects several nerves in different parts of the body at the same time. The neuropathy can affect the nerves responsible for feeling, movement, or both. The neuropathy can also limit or take away the function of autonomic nerves responsible for digestion, blood pressure, or heart rate. --- ### [PANDAS](https://www.mitoaction.org/glossary/pandas/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Occurs when strep triggers a misdirected immune response. Which results in the inflammation of a child’s brain. In which the child quickly exhibits life changing symptoms such as OCD, anxiety, tics, personality changes, etc. --- ### [Pantothenic](https://www.mitoaction.org/glossary/pantothenic-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Also called vitamin B which is essential to the synthesization of Coenzyme A. Which is essential to metabolize fatty acid and synthesize and metabolize proteins, carbohydrates and fats. --- ### [Physical therapy](https://www.mitoaction.org/glossary/physical-therapy/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Treatments aimed at helping someone improve the ability to move parts of their body. --- ### [Organic Academia](https://www.mitoaction.org/glossary/organic-academia/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A term used to classify a group of metabolic disorders which disrupt normal amino acid metabolism, like branched-chain amino acids, causing a build up of acids that are not usually present. --- ### [Occupational therapy](https://www.mitoaction.org/glossary/occupational-therapy/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Treatments aimed at helping someone complete certain daily tasks of daily living --- ### [Ornithine Transcarbamylase Deficiency](https://www.mitoaction.org/glossary/ornithine-transcarbamylase-deficiency-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A rare X-linked genetic disorder characterized by a complete or partial lack of the enzyme Ornithine Transcarbamylase. It is one of the six enzymes that break down and remove nitrogen in the body. --- ### [Newborn screening panels](https://www.mitoaction.org/glossary/newborn-screening-panels/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Screening done during the first 48-72 hours of life that look for certain treatable genetic conditions. --- ### [Niacin](https://www.mitoaction.org/glossary/niacin/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Supplement that aids in its deficiency that leads to slow metabolism and an intolerance to the cold. It is made and used by your body to turn food into energy. --- ### [Nonspecific symptoms](https://www.mitoaction.org/glossary/nonspecific-symptoms/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Something that doesn’t point to one specific cause. --- ### [Myotonic Dystrophy Type 1](https://www.mitoaction.org/glossary/myotonic-dystrophy-type-1-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A genetic disorder that causes progressive muscle weakness affecting all of the bodies organs and muscles. --- ### [Nabilone](https://www.mitoaction.org/glossary/nabilone/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A synthetic cannabinoid with therapeutic use as an anti- nausea and vomiting and adjunct analgesic for neurological pain. --- ### [Nasogastric tube](https://www.mitoaction.org/glossary/nasogastric-tube-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A flexible tube of rubber of plastic that is passed through the nose, down through the esophagus and into the stomach. --- ### [Myalgic encephalomyelitis](https://www.mitoaction.org/glossary/myalgic-encephalomyelitis-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A condition characterized by overwhelming fatigue that is not improved by rest. --- ### [Mitochondrial Dysfunction](https://www.mitoaction.org/glossary/mitochondrial-dysfunction-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This is when mitochondria do not work as well as they should due to another disease or condition. Many conditions can lead to secondary dysfunction. --- ### [Multifactorial causes](https://www.mitoaction.org/glossary/multifactorial-causes/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Caused by many things. --- ### [Mutations](https://www.mitoaction.org/glossary/mutations/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Changes in the DNA. --- ### [Methylenetetrahydrofolate Reductase](https://www.mitoaction.org/glossary/methylenetetrahydrofolate-reductase-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An enzyme that breaks down the amino acid homocysteine. The MTHFR gene that codes this enzyme has the potential to mutate. Which can either interfere with the enzyme ability to function normally or completely inactivate it. --- ### [Microarray Analysis](https://www.mitoaction.org/glossary/microarray-analysis-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An interpretation technique that generates data from DNA, RNA and protein microarray which allows researchers to investigate the expression state of a large number of genes or genomes. --- ### [Mito Swab](https://www.mitoaction.org/glossary/mito-swab/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Buccal Swab test to analyze the Mitochondrial Electron Transport Chain Complex (ETC 1 & 5). --- ### [Mitochondrial](https://www.mitoaction.org/glossary/mitochondrial/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Related to the mitochondria. --- ### [Mitochondrial factors](https://www.mitoaction.org/glossary/mitochondrial-factors/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Changes in a part of the cell called the mitochondria. --- ### [Mitochondrial methionyl-tRNA formyltransferase](https://www.mitoaction.org/glossary/mitochondrial-methionyl-trna-formyltransferase/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A protein in humans that is encoded by the MTFMT gene. The encoded protein by the nuclear gene localized to the mitochondrion. That is where it catalyzes the formylation of methionyl-tRNA. Recessive- types of mutations in MTFMT have been shown to cause mitochondrial disease. --- ### [Mitochondrial Neurogastrointestinal Encephalopathy](https://www.mitoaction.org/glossary/mitochondrial-neurogastrointestinal-encephalopathy/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A multisystem disorder characterized by progressive degeneration of the muscles of the gastrointestinal tract. Causing gastrointestinal dysmotility, weakening of extraocular muscles causing drooping of the eyelids and restricted eye movements. The condition also causes degeneration of the peripheral nerves causing altered sensations and weakness of the arms and legs along with general wasting. --- ### [Metabolic factors](https://www.mitoaction.org/glossary/metabolic-factors/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Substances or conditions that impact the body’s ability to break down food for energy. --- ### [Medical Arcuate Ligament Syndrome](https://www.mitoaction.org/glossary/medical-arcuate-ligament-syndrome/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This occurs when the arc-shaped band of tissue in the chest area presses on or traps the artery that supplies blood to the organs in the upper abdomen. --- ### [L-Methylfolate](https://www.mitoaction.org/glossary/l-methylfolate-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A folic acid supplement form that is used to prevent low levels of Folic acid. Low Folic acid levels can lead to certain types of anemia. --- ### [Loose Anagen Syndrome](https://www.mitoaction.org/glossary/loose-anagen-syndrome-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A hair disorder in which the hair is ‘loose’ and can be painlessly pulled from the scalp. Essentially the hair is not properly anchored, there is no known cause for this disorder. --- ### [Lumbar Puncture](https://www.mitoaction.org/glossary/lumbar-puncture/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This is a procedure in which a needle is inserted between two lumbar bones to remove a sample of cerebrospinal fluid. This the fluid that surrounds your brain and spinal cord to protect them from injury. --- ### [Lupus](https://www.mitoaction.org/glossary/lupus/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A disease that occurs when the body’s immune system attacks your own tissues and organs. Lupus induced inflammation can affect many different body systems including your joints, skins, blood cells, brain, heart and lungs. --- ### [LV Diastolic Dysfunction](https://www.mitoaction.org/glossary/lv-diastolic-dysfunction-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A condition in which the relaxation process of the heart is disturbed as the left ventricle becomes stiffer than normal. Subsequently causing weakening of the heart which can lead to its failure. --- ### [Levocarnitine](https://www.mitoaction.org/glossary/levocarnitine/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Helps transport long-chain fatty acids across mitochondrial inner membrane. --- ### [Interstitial Cystitis](https://www.mitoaction.org/glossary/interstitial-cystitis-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A chronic bladder condition resulting in recurring discomfort or pain in the bladder. People with IC usually have inflamed or irritated bladder walls which can cause scarring and stiffening of the bladder. --- ### [Intravenous Immunoglobulin](https://www.mitoaction.org/glossary/intravenous-immunoglobulin/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It is a therapy treatment for patients with antibody deficiencies. it is prepared from immunoglobulin (antibodies) from the plasma of healthy donors. --- ### [Irritable Bowel Syndrome](https://www.mitoaction.org/glossary/irritable-bowel-syndrome-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A common disorder that affects the large intestine. Signs and symptoms include cramping, abdominal pain, bloating, gas, diarrhea, or constipation. --- ### [Ischemic Exercise test](https://www.mitoaction.org/glossary/ischemic-exercise-test-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A clinical tool for evaluation for patients with a suspected metabolic disorder for muscle function. A confirmation of glycolytic metabolism is a failure in elevation of lactate in the blood from exercised muscles. --- ### [Inheritance](https://www.mitoaction.org/glossary/inheritance/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The way a genetic condition is passed down in a family. --- ### [Inherited condition](https://www.mitoaction.org/glossary/inherited-condition/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A condition that is passed down in families through DNA --- ### [IEP](https://www.mitoaction.org/glossary/iep/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The skills that need to be taught by an educator or related services professional so that the child’s educational needs are met. --- ### [Hypoglycemia](https://www.mitoaction.org/glossary/hypoglycemia/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Low blood sugar. --- ### [Implantable cardiac defibrillators](https://www.mitoaction.org/glossary/implantable-cardiac-defibrillators-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A small battery-powered device placed in the chest to detect and stop irregular heartbeats (arrhythmias). --- ### [HMG-CoA reductase inhibitor](https://www.mitoaction.org/glossary/hmg-coa-reductase-inhibitor-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A substance that blocks an enzyme needed by the body to make cholesterol and lowers the amount of cholesterol in the blood. --- ### [Heteroplasmy](https://www.mitoaction.org/glossary/heteroplasmy/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The percent of mutated cells. --- ### [Hepatologists](https://www.mitoaction.org/glossary/hepatologists/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Medical doctors that diagnose, treat and manage problems that associated with the liver, gallbladder, bile ducts and pancreas. --- ### [Hepatorenal Syndrome](https://www.mitoaction.org/glossary/hepatorenal-syndrome-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A serious complication of the a disease that is marked by the degeneration of cells, inflammation, and fibrous thickening of the liver tissue, with a critically poor diagnosis. The medical hallmark is severe renal constriction of blood vessels. This results in a complex change of the blood supply of the gastrointestinal tract, liver, splen, and pancreas. --- ### [Health Plan](https://www.mitoaction.org/glossary/health-plan/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A procedure that the school follows to maintain the child’s health when in their care. --- ### [Gastroesophageal Reflux disease](https://www.mitoaction.org/glossary/gastroesophageal-reflux-disease-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A digestive disorder that affects the ring of muscle between your esophagus and your stomach. If you have it, you may get heartburn or acid digestion. --- ### [Gastrointestinal](https://www.mitoaction.org/glossary/gastrointestinal/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Problems in the stomach or intestines. --- ### [Folinic Acid](https://www.mitoaction.org/glossary/folinic-acid/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Reduced form of folic acid (vitamin B9). --- ### [Friedreich's Ataxia](https://www.mitoaction.org/glossary/friedreichs-ataxia/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A rare inherited disease that causes progressive nervous system damage and movement problems. --- ### [Gastroparesis/Delayed Gastric Emptying](https://www.mitoaction.org/glossary/gastroparesis-delayed-gastric-emptying-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A condition that affects the normal spontaneous movement of the muscles in the stomach. --- ### [Flaxseed](https://www.mitoaction.org/glossary/flaxseed/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") a rich source of essential fatty acid alpha-linolenic, a heart healthy omega 3 fatty acid. --- ### [Fatty Acid Oxidation Disorders](https://www.mitoaction.org/glossary/fatty-acid-oxidation-disorders/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A group of genetic conditions that affect how the body breaks down fats to make energy. --- ### [Epidermolysis Bullosa](https://www.mitoaction.org/glossary/epidermolysis-bullosa-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A group of rare diseases that cause fragile, blistering skin. --- ### [Epileptologist](https://www.mitoaction.org/glossary/epileptologist-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A neurologist that specializes in the treatment of seizures and epilepsy. --- ### [Exocrine pancreatic Insufficiency](https://www.mitoaction.org/glossary/exocrine-pancreatic-insufficiency-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It occurs when your pancreas doesn’t produce enough digestive enzymes. --- ### [Facioscapulohumeral muscular dystrophy](https://www.mitoaction.org/glossary/facioscapulohumeral-muscular-dystrophy/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A rare genetic muscle disease that affects the muscles of a child’s face, shoulders, upper arms and lower legs. --- ### [Ehlers-Danlos Syndrome](https://www.mitoaction.org/glossary/ehlers-danlos-syndrome/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It is an inherited condition that affects the connective tissue of the body. Connective tissues are responsible for structuring and supporting the skin, blood vessels, bones and organs. Connective tissues are made up of cells, fibrous material and a protein called collagen. --- ### [Electroencephalogram](https://www.mitoaction.org/glossary/electroencephalogram/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A test that detects in your brain using electrodes on your scalp. --- ### [Electromyography](https://www.mitoaction.org/glossary/electromyography/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A diagnostic procedure to assess the health of muscle and nerve cells that control each. --- ### [Emergency protocol letter](https://www.mitoaction.org/glossary/emergency-protocol-letter/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A letter written and signed by a doctor that explains what to do during an emergency for a specific patient. --- ### [Dravet Syndrome](https://www.mitoaction.org/glossary/dravet-syndrome/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An epilepsy syndrome, that begins in infancy or early childhood and can include a spectrum of symptoms ranging from mild to severe --- ### [Dysarthria](https://www.mitoaction.org/glossary/dysarthria-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A motor speech disorder in which the muscles that are used to produce speech are damaged, paralyzed, or weakened. Patients with this condition cannot control their tongue or voice and may slur their words. --- ### [Dystonia](https://www.mitoaction.org/glossary/dystonia-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A movement disorder in which the muscles contract involuntarily. Which causes repetitive or twisting movements. --- ### [Duchenne Muscular Dystrophy](https://www.mitoaction.org/glossary/duchenne-muscular-dystrophy/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A genetic disorder characterized by progressive muscle degeneration and weakness due to alterations of a protein called dystrophin that keeps muscle cells intact. --- ### [Dietitian](https://www.mitoaction.org/glossary/dietitian-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A trained healthcare provider who specializes in nutrition and its effect on health. --- ### [Docosahexaenoic Acid](https://www.mitoaction.org/glossary/docosahexaenoic-acid/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An Omega -3 fatty acid found in cold water, fatty fish. --- ### [Dominant](https://www.mitoaction.org/glossary/dominant/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A gene from either parent which can express a disease. --- ### [Dementia](https://www.mitoaction.org/glossary/dementia/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An overarching term for memory loss and other changes in thinking. --- ### [Creatine Kinase](https://www.mitoaction.org/glossary/creatine-kinase/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An enzyme found in the heart, brain, skeletal muscle and other tissue. Increased amounts of CK is released into the blood when there is muscle damage. --- ### [Creatine phosphokinase test](https://www.mitoaction.org/glossary/creatine-phosphokinase-test/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Creatine phosphokinase is an enzyme found in the heart, brain, and skeletal muscles in the body. it is performed when the heart, brain, or muscle is damaged. This enzyme leaks into the bloodstream and finding which form of CPK is high helps to determine which muscle is damaged. --- ### [Cyanocobalamin](https://www.mitoaction.org/glossary/cyanocobalamin/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Aids in red blood cell growth and proliferation. --- ### [Crohn's Disease](https://www.mitoaction.org/glossary/crohns-disease-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A type of inflammatory bowel disease. It causes inflammation of the digestive tract. Which can lead to abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition. --- ### [Chronic Variable Immune Deficiency](https://www.mitoaction.org/glossary/chronic-variable-immune-deficiency-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An immune system impairing disorder. Patients with this disorder are highly susceptible to recurrent infections; especially in the lungs, sinuses and ears. --- ### [Cochlear Implants](https://www.mitoaction.org/glossary/cochlear-implants/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Electronic device that partially restores hearing. It is helpful for those who have hearing loss from inner-ear damage and those who are no longer helped by hearing aids. --- ### [Cognitive decline](https://www.mitoaction.org/glossary/cognitive-decline/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Term used to describe trouble with memory, slower thinking skills, loss of awareness and judgment. --- ### [Conduction Abnormalities](https://www.mitoaction.org/glossary/conduction-abnormalities-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Conduction s how electrical impulses travel through the heart, which causes it to beat. Some conduction disorders can cause arrhythmias or irregular heartbeats. --- ### [Chorionic villi](https://www.mitoaction.org/glossary/chorionic-villi/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A specific part of the placenta, or organ connecting a baby to their mother during pregnancy. --- ### [Chromosome](https://www.mitoaction.org/glossary/chromosome/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Molecule made up of proteins and strands of DNA. --- ### [Chronic Intestinal Pseudo-Obstruction](https://www.mitoaction.org/glossary/chronic-intestinal-pseudo-obstruction/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Rare disorder of gastrointestinal motility where coordinated contraction in the intestinal tract become altered and inefficient. When this happens nutritional requirements cannot be adequately met. --- ### [Chronic Molluscum](https://www.mitoaction.org/glossary/chronic-molluscum/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A viral skin infection that causes one or more raised, pearl- like bumps with indentations in the center. --- ### [Chronic Pulmonary Aspiration](https://www.mitoaction.org/glossary/chronic-pulmonary-aspiration-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The repeated passage of food material, gastric reflux, and/or salvia in the subglottic airways that causes chronic or recurrent respiratory symptoms. --- ### [Chronic SIBO](https://www.mitoaction.org/glossary/chronic-sibo/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Excessive bacteria in the small intestine. SIBO is frequently implicated as the cause of chronic diarrhea and malabsorption. --- ### [Cellular Viability](https://www.mitoaction.org/glossary/cellular-viability/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A measure of the proportion of healthy cells in a population. --- ### [Central Line](https://www.mitoaction.org/glossary/central-line/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It is similar to a regular intravenous (IV) line but this is much longer. It goes all the way up to a vein near or just inside the heart. --- ### [Ceramide levels](https://www.mitoaction.org/glossary/ceramide-levels-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Complex lipids that play a central role in cell membrane integrity, the cellular stress response, inflammatory signaling and apoptosis. --- ### [Cerebrospinal fluid](https://www.mitoaction.org/glossary/cerebrospinal-fluid/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The fluid surrounding the brain and spinal cord. --- ### [Ceruloplasmin](https://www.mitoaction.org/glossary/ceruloplasmin-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A protein made in the liver that stores and carries the mineral copper throughout the body. --- ### [Charcot-Marie Tooth Disease](https://www.mitoaction.org/glossary/charcot-marie-tooth-disease-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A group of inherited disorders that cause nerve damage. the damage occurs mainly in the arms and legs. The disease results in smaller, weaker muscles with loses in sensations, muscle contractions, and difficulty walking. Foot deformities like hammertoes and high arches are common. --- ### [Cardiomyopathy](https://www.mitoaction.org/glossary/cardiomyopathy/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Conditions that affect the heart muscle. --- ### [Cardiopulmonary Exercise test](https://www.mitoaction.org/glossary/cardiopulmonary-exercise-test-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A non-invasive method used to assess the performance of the heart and lungs at rest and during exercise. --- ### [Carnitine Palmitoyltransferase Deficiency](https://www.mitoaction.org/glossary/carnitine-palmitoyltransferase-deficiency-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A problem the occurs in the CPT1 and 2 which are enzymes. They help transit and utilize fatty acids in the cells. --- ### [Carrier](https://www.mitoaction.org/glossary/carrier/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A person who has one copy of a genetic change. For many conditions, carriers do not show symptoms of a condition or their symptoms are less severe. --- ### [C-Diff](https://www.mitoaction.org/glossary/c-diff/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A bacterium that can cause symptoms ranging from diarrhea to life threatening inflammation of the colon. --- ### [Cecostomy Tube surgery](https://www.mitoaction.org/glossary/cecostomy-tube-surgery-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The insertion of an artificial tube from the skin of the abdomen through to the cecum which is the entrance to the large intestines. A couple of weeks after the procedure the surgeon places either a Chait-trapdoor or MIC-key button which needs to be changed about twice a year. --- ### [Cardiac Arrhythmia](https://www.mitoaction.org/glossary/cardiac-arrhythmia/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Irregular rate or rhythm of the heartbeat. --- ### [Bicitra](https://www.mitoaction.org/glossary/bicitra/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A medicine used to make urine less acidic. --- ### [BiPAP Machine](https://www.mitoaction.org/glossary/bipap-machine/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A bilevel positive airway pressure machine. When breathed in the BiPAP deliver air pressure. When blown out the machine reduces air pressure. --- ### [Blood Gases Test](https://www.mitoaction.org/glossary/blood-gases-test/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The measurement of the amount of oxygen and carbon dioxide in the blood. It can be used to determine the pH or acidity of the blood. This measurement is conducted using a blood sample from an artery. --- ### [Autosomal dominant](https://www.mitoaction.org/glossary/autosomal-dominant/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") When a genetic condition is caused by a change to one of someone’s two copies of a gene. Autosomal conditions do not include the X or Y chromosome. --- ### [Autosomal recessive](https://www.mitoaction.org/glossary/autosomal-recessive/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") When a genetic condition is caused by changes to both of someone’s copies of a gene. Autosomal conditions do not include the X or Y chromosome. --- ### [B- type Natriuretic peptide](https://www.mitoaction.org/glossary/b-type-natriuretic-peptide-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Gives information on how heart is functioning/ pumping. Protein measured to diagnose or rule out heart failure. --- ### [Basal Ganglia](https://www.mitoaction.org/glossary/basal-ganglia-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A group of structures in the base of the brain. That are primarily responsible for motor control, motor learning, executive function, behavior, and emotions. --- ### [Asparagine](https://www.mitoaction.org/glossary/asparagine-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A beta-amido derivative of aspartic acid and plays an important role in the biosynthesis of glycoprotein. --- ### [Ascorbic Acid](https://www.mitoaction.org/glossary/ascorbic-acid/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An antioxidant that helps replenish Vitamin E. --- ### [Ankylosing Spondylitis](https://www.mitoaction.org/glossary/ankylosing-spondylitis/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An inflammatory disease that can cause some of the bones in the spine to fuse, over time. --- ### [Antagonistic pleiotropy](https://www.mitoaction.org/glossary/antagonistic-pleiotropy-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A control of more than one trait, where at least one of the traits is beneficial to the organism’s fitness early on in life and at least one is detrimental to the organism’s fitness, later on due to decline in the force of natural selection. --- ### [Antiproliferative](https://www.mitoaction.org/glossary/antiproliferative/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Used to or tending to inhibit cell growth. --- ### [Antispasmodic](https://www.mitoaction.org/glossary/antispasmodic/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Capable of preventing or relieving spasms or convulsions. --- ### [Addison's Disease](https://www.mitoaction.org/glossary/addisons-disease/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") This occurs when your body doesn’t produce enough of certain hormones. The body’s adrenal glands produce too little cortisol and too little aldosterone. --- ### [Age related Macular Degeneration](https://www.mitoaction.org/glossary/age-related-macular-degeneration/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") It is the result of a part of the retina called the macula is damaged. --- ### [Alpers Disease](https://www.mitoaction.org/glossary/alpers-disease/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A progressive, neurodevelopmental mitochondrial DnA depletion syndrome. it is characterized by psychomotor regression (dementia), seizures and liver disease. --- ### [Alpha tocotrienol](https://www.mitoaction.org/glossary/alpha-tocotrienol/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A member of the vitamin E family. --- ### [Amniotic fluid](https://www.mitoaction.org/glossary/amniotic-fluid/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The fluid that surrounds a baby during pregnancy. --- ### [Amyotrophic lateral sclerosis](https://www.mitoaction.org/glossary/amyotrophic-lateral-sclerosis/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A progressive nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control. --- ### [Antinuclear Antibodies](https://www.mitoaction.org/glossary/antinuclear-antibodies-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Antibodies that cause disease by mistakenly attacking healthy cells and tissue. --- ### [Abdominal bruit](https://www.mitoaction.org/glossary/abdominal-bruit/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A swishing or washing machine-like sound heard with a stethoscope over the spleen, renal arteries or abdominal aorta. --- ### [Accommodations](https://www.mitoaction.org/glossary/accommodations/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Changes that remove the barriers to learning. They can also change how and what the children is expected to learn and know. --- ### [Preventricular contraction](https://www.mitoaction.org/glossary/preventricular-contraction/) **Published:** March 13, 2023 **Author:** Russell Weller **Excerpt:** PVC **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Extra heartbeats that begin in one of the heart’s two lower pumping chambers (ventricles). --- ### [Pyruvate levels](https://www.mitoaction.org/glossary/pyruvate-levels-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The output of the metabolism of glucose known as glycolysis. --- ### [Pulse Ox](https://www.mitoaction.org/glossary/pulse-ox/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Pulse oximeter: A device used to measure arterial blood oxygenation. --- ### [Pantothenic](https://www.mitoaction.org/glossary/pantothenic/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Also called vitamin B which is essential to the synthesization of Coenzyme A. Which is essential to metabolize fatty acid and synthesize and metabolize proteins, carbohydrates and fats. --- ### [Ornithine Transcarbamylase Deficiency](https://www.mitoaction.org/glossary/ornithine-transcarbamylase-deficiency/) **Published:** March 13, 2023 **Author:** Russell Weller **Excerpt:** OTD **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A rare X-linked genetic disorder characterized by a complete or partial lack of the enzyme Ornithine Transcarbamylase. It is one of the six enzymes that break down and remove nitrogen in the body. --- ### [Newborn screening panels](https://www.mitoaction.org/glossary/newborn-screening-panels-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Excerpt:** NBS, newborn screening **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Screening done during the first 48-72 hours of life that look for certain treatable genetic conditions. --- ### [Nonspecific symptoms](https://www.mitoaction.org/glossary/nonspecific-symptoms-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Something that doesn’t point to one specific cause. --- ### [Nasogastric tube](https://www.mitoaction.org/glossary/nasogastric-tube/) **Published:** March 13, 2023 **Author:** Russell Weller **Excerpt:** NG tube **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A flexible tube of rubber of plastic that is passed through the nose, down through the esophagus and into the stomach. --- ### [Myalgic encephalomyelitis](https://www.mitoaction.org/glossary/myalgic-encephalomyelitis/) **Published:** March 13, 2023 **Author:** Russell Weller **Excerpt:** chronic fatigue syndrome, ME/CFS **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A condition characterized by overwhelming fatigue that is not improved by rest. --- ### [Multifactorial causes](https://www.mitoaction.org/glossary/multifactorial-causes-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Caused by many things. --- ### [Mutations](https://www.mitoaction.org/glossary/mutations-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Excerpt:** genetic variant, genetic change **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Changes in the DNA. --- ### [Mitochondrial factors](https://www.mitoaction.org/glossary/mitochondrial-factors-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Changes in a part of the cell called the mitochondria. --- ### [Methylenetetrahydrofolate Reductase](https://www.mitoaction.org/glossary/methylenetetrahydrofolate-reductase/) **Published:** March 13, 2023 **Author:** Russell Weller **Excerpt:** MTHFR **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An enzyme that breaks down the amino acid homocysteine. The MTHFR gene that codes this enzyme has the potential to mutate. Which can either interfere with the enzyme ability to function normally or completely inactivate it. --- ### [Irritable Bowel Syndrome](https://www.mitoaction.org/glossary/irritable-bowel-syndrome/) **Published:** March 13, 2023 **Author:** Russell Weller **Excerpt:** IBS **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A common disorder that affects the large intestine. Signs and symptoms include cramping, abdominal pain, bloating, gas, diarrhea, or constipation. --- ### [Implantable cardiac defibrillators](https://www.mitoaction.org/glossary/implantable-cardiac-defibrillators/) **Published:** March 13, 2023 **Author:** Russell Weller **Excerpt:** ICD **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A small battery-powered device placed in the chest to detect and stop irregular heartbeats (arrhythmias). --- ### [Gastrointestinal](https://www.mitoaction.org/glossary/gastrointestinal-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Excerpt:** GI **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Problems in the stomach or intestines. --- ### [Gastroesophageal Reflux disease](https://www.mitoaction.org/glossary/gastroesophageal-reflux-disease/) **Published:** March 13, 2023 **Author:** Russell Weller **Excerpt:** GERD **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A digestive disorder that affects the ring of muscle between your esophagus and your stomach. If you have it, you may get heartburn or acid digestion. --- ### [Friedreich's Ataxia](https://www.mitoaction.org/glossary/friedreichs-ataxia-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Excerpt:** Friedreichs Ataxia **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A rare inherited disease that causes progressive nervous system damage and movement problems. --- ### [Epileptologist](https://www.mitoaction.org/glossary/epileptologist/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A neurologist that specializes in the treatment of seizures and epilepsy. --- ### [Emergency protocol letter](https://www.mitoaction.org/glossary/emergency-protocol-letter-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A letter written and signed by a doctor that explains what to do during an emergency for a specific patient. --- ### [Dietitian](https://www.mitoaction.org/glossary/dietitian/) **Published:** March 13, 2023 **Author:** Russell Weller **Excerpt:** Registered dietitian **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A trained healthcare provider who specializes in nutrition and its effect on health. --- ### [Conduction Abnormalities](https://www.mitoaction.org/glossary/conduction-abnormalities/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Conduction s how electrical impulses travel through the heart, which causes it to beat. Some conduction disorders can cause arrhythmias or irregular heartbeats. --- ### [Chronic Variable Immune Deficiency](https://www.mitoaction.org/glossary/chronic-variable-immune-deficiency/) **Published:** March 13, 2023 **Author:** Russell Weller **Excerpt:** CVID **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") An immune system impairing disorder. Patients with this disorder are highly susceptible to recurrent infections; especially in the lungs, sinuses and ears. --- ### [Charcot-Marie Tooth Disease](https://www.mitoaction.org/glossary/charcot-marie-tooth-disease/) **Published:** March 13, 2023 **Author:** Russell Weller **Excerpt:** CMTD **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A group of inherited disorders that cause nerve damage. the damage occurs mainly in the arms and legs. The disease results in smaller, weaker muscles with loses in sensations, muscle contractions, and difficulty walking. Foot deformities like hammertoes and high arches are common. --- ### [Chorionic villi](https://www.mitoaction.org/glossary/chorionic-villi-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A specific part of the placenta, or organ connecting a baby to their mother during pregnancy. --- ### [Cerebrospinal fluid](https://www.mitoaction.org/glossary/cerebrospinal-fluid-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Excerpt:** CSF **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") The fluid surrounding the brain and spinal cord. --- ### [Cardiopulmonary Exercise test](https://www.mitoaction.org/glossary/cardiopulmonary-exercise-test/) **Published:** March 13, 2023 **Author:** Russell Weller **Excerpt:** CPET **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A non-invasive method used to assess the performance of the heart and lungs at rest and during exercise. --- ### [Carnitine Palmitoyltransferase Deficiency](https://www.mitoaction.org/glossary/carnitine-palmitoyltransferase-deficiency/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A problem the occurs in the CPT1 and 2 which are enzymes. They help transit and utilize fatty acids in the cells. --- ### [B- type Natriuretic peptide](https://www.mitoaction.org/glossary/b-type-natriuretic-peptide/) **Published:** March 13, 2023 **Author:** Russell Weller **Excerpt:** BNP, NT-ProBNP **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Gives information on how heart is functioning/ pumping. Protein measured to diagnose or rule out heart failure. --- ### [Antagonistic pleiotropy](https://www.mitoaction.org/glossary/antagonistic-pleiotropy/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A control of more than one trait, where at least one of the traits is beneficial to the organism’s fitness early on in life and at least one is detrimental to the organism’s fitness, later on due to decline in the force of natural selection. --- ### [Alpers Disease](https://www.mitoaction.org/glossary/alpers-disease-2/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") A progressive, neurodevelopmental mitochondrial DnA depletion syndrome. it is characterized by psychomotor regression (dementia), seizures and liver disease. --- ### [Antinuclear Antibodies](https://www.mitoaction.org/glossary/antinuclear-antibodies/) **Published:** March 13, 2023 **Author:** Russell Weller **Content:** [ ![Print Friendly, PDF & Email](https://www.mitoaction.org/wp-content/uploads/2024/07/Print-Friendly.webp) ](# "Printer Friendly, PDF & Email") Antibodies that cause disease by mistakenly attacking healthy cells and tissue. --- ## Categories ### [Uncategorized](https://www.mitoaction.org/category/uncategorized/) --- ### [Press Releases](https://www.mitoaction.org/category/press-releases/) --- ### [MitoAction in the News](https://www.mitoaction.org/category/mitoaction-news/) --- ### [Mitochondrial Disease News](https://www.mitoaction.org/category/mitochondrial-news/) --- ### [Patient Spotlight](https://www.mitoaction.org/category/patient-spotlight/) --- ## Tags ### [US Only](https://www.mitoaction.org/tag/us-only/) --- ### [Town Meeting](https://www.mitoaction.org/tag/town-meeting/) --- ### [expert series](https://www.mitoaction.org/tag/expert-series/) --- ### [mito town meeting](https://www.mitoaction.org/tag/mito-town-meeting/) --- ### [research](https://www.mitoaction.org/tag/research/) --- ### [Genetics](https://www.mitoaction.org/tag/genetics/) --- ### [Genetic Counselor](https://www.mitoaction.org/tag/genetic-counselor/) --- ### [energy in action](https://www.mitoaction.org/tag/energy-in-action/) --- ### [podcast](https://www.mitoaction.org/tag/podcast/) --- ### [parents as rare](https://www.mitoaction.org/tag/parents-as-rare/) --- ### [dalias wish](https://www.mitoaction.org/tag/dalias-wish/) --- ### [rare disease](https://www.mitoaction.org/tag/rare-disease/) --- ### [patient stories](https://www.mitoaction.org/tag/patient-stories/) --- ### [psychiatry](https://www.mitoaction.org/tag/psychiatry/) --- ### [mental health](https://www.mitoaction.org/tag/mental-health/) --- ### [mitochondria](https://www.mitoaction.org/tag/mitochondria/) --- ### [mito](https://www.mitoaction.org/tag/mito/) --- ### [grief](https://www.mitoaction.org/tag/grief/) --- ### [grief and mito](https://www.mitoaction.org/tag/grief-and-mito/) --- ### [transition planning](https://www.mitoaction.org/tag/transition-planning/) --- ### [mito parent](https://www.mitoaction.org/tag/mito-parent/) --- ### [parenting](https://www.mitoaction.org/tag/parenting/) --- ### [advocacy](https://www.mitoaction.org/tag/advocacy/) --- ### [support](https://www.mitoaction.org/tag/support/) --- ### [mens support](https://www.mitoaction.org/tag/mens-support/) --- ### [support call](https://www.mitoaction.org/tag/support-call/) --- ### [mitosocial](https://www.mitoaction.org/tag/mitosocial/) --- ### [clinical trials](https://www.mitoaction.org/tag/clinical-trials/) --- ### [Energy Walk](https://www.mitoaction.org/tag/energy-walk/) --- ### [Syracuse](https://www.mitoaction.org/tag/syracuse/) --- ### [Awareness Week](https://www.mitoaction.org/tag/awareness-week/) --- ### [mito support](https://www.mitoaction.org/tag/mito-support/) --- ### [faod](https://www.mitoaction.org/tag/faod/) --- ### [mitochondrial dysfunction](https://www.mitoaction.org/tag/mitochondrial-dysfunction/) --- ### [rhabo](https://www.mitoaction.org/tag/rhabo/) --- ### [rhobdomyolosis](https://www.mitoaction.org/tag/rhobdomyolosis/) --- ### [cardiac complications](https://www.mitoaction.org/tag/cardiac-complications/) --- ### [LCHADD](https://www.mitoaction.org/tag/lchadd/) --- ### [retinopathy](https://www.mitoaction.org/tag/retinopathy/) --- ### [mitochampions](https://www.mitoaction.org/tag/mitochampions/) --- ### [mitosupport](https://www.mitoaction.org/tag/mitosupport/) --- ### [rare disease support](https://www.mitoaction.org/tag/rare-disease-support/) --- ### [awareness](https://www.mitoaction.org/tag/awareness/) --- ### [tk2d](https://www.mitoaction.org/tag/tk2d/) --- ### [IMC](https://www.mitoaction.org/tag/imc/) --- ### [diagnosis](https://www.mitoaction.org/tag/diagnosis/) --- ### [diagnostic report](https://www.mitoaction.org/tag/diagnostic-report/) --- ### [immune cell function](https://www.mitoaction.org/tag/immune-cell-function/) --- ### [primary mitochondrial](https://www.mitoaction.org/tag/primary-mitochondrial/) --- ### [immune dysfunction](https://www.mitoaction.org/tag/immune-dysfunction/) --- ### [rare in school](https://www.mitoaction.org/tag/rare-in-school/) --- ### [IEP](https://www.mitoaction.org/tag/iep/) --- ### [mito in school](https://www.mitoaction.org/tag/mito-in-school/) --- ### [Matthew Harty camper fund](https://www.mitoaction.org/tag/matthew-harty-camper-fund/) --- ### [mito events](https://www.mitoaction.org/tag/mito-events/) --- ### [LCHADD Retinopathy](https://www.mitoaction.org/tag/lchadd-retinopathy/) --- ### [treatment](https://www.mitoaction.org/tag/treatment/) --- ### [barth syndrome](https://www.mitoaction.org/tag/barth-syndrome/) --- ### [ultra-rare drug development](https://www.mitoaction.org/tag/ultra-rare-drug-development/) --- ### [ceramides](https://www.mitoaction.org/tag/ceramides/) --- ### [VLCADD](https://www.mitoaction.org/tag/vlcadd/) --- ### [heart failure](https://www.mitoaction.org/tag/heart-failure/) --- ### [stem cells](https://www.mitoaction.org/tag/stem-cells/) --- ### [brain](https://www.mitoaction.org/tag/brain/) --- ### [leigh syndrome](https://www.mitoaction.org/tag/leigh-syndrome/) --- ### [ultra-rare](https://www.mitoaction.org/tag/ultra-rare/) --- ### [opportunities](https://www.mitoaction.org/tag/opportunities/) --- ### [potential solutions](https://www.mitoaction.org/tag/potential-solutions/) --- ### [mitochrondrial-targeted therapies](https://www.mitoaction.org/tag/mitochrondrial-targeted-therapies/) --- ### [massachusetts](https://www.mitoaction.org/tag/massachusetts/) --- ### [mito community](https://www.mitoaction.org/tag/mito-community/) --- ### [employment](https://www.mitoaction.org/tag/employment/) --- ### [employed with mito](https://www.mitoaction.org/tag/employed-with-mito/) --- ### [Holiday](https://www.mitoaction.org/tag/holiday/) --- ### [Christmas](https://www.mitoaction.org/tag/christmas/) --- ### [Hanukkah](https://www.mitoaction.org/tag/hanukkah/) --- ### [Thanksgiving](https://www.mitoaction.org/tag/thanksgiving/) --- ### [art show](https://www.mitoaction.org/tag/art-show/) --- ### [open mic](https://www.mitoaction.org/tag/open-mic/) --- ### [Pearson Syndrome](https://www.mitoaction.org/tag/pearson-syndrome/) --- ### [spanish](https://www.mitoaction.org/tag/spanish/) --- ### [Pennsylvania](https://www.mitoaction.org/tag/pennsylvania/) --- ### [local support](https://www.mitoaction.org/tag/local-support/) --- ### [Maine](https://www.mitoaction.org/tag/maine/) --- ### [MCADD](https://www.mitoaction.org/tag/mcadd/) --- ### [new studies](https://www.mitoaction.org/tag/new-studies/) --- ### [positivity](https://www.mitoaction.org/tag/positivity/) --- ### [life with mito](https://www.mitoaction.org/tag/life-with-mito/) --- ### [mito quilts of hope](https://www.mitoaction.org/tag/mito-quilts-of-hope/) --- ### [LHON](https://www.mitoaction.org/tag/lhon/) --- ### [Activity](https://www.mitoaction.org/tag/activity/) --- ### [Reneo](https://www.mitoaction.org/tag/reneo/) --- ### [mito update](https://www.mitoaction.org/tag/mito-update/) --- ### [INFORM](https://www.mitoaction.org/tag/inform/) --- ### [lecture series](https://www.mitoaction.org/tag/lecture-series/) --- ### [viruses](https://www.mitoaction.org/tag/viruses/) --- ### [cell function](https://www.mitoaction.org/tag/cell-function/) --- ### [virus](https://www.mitoaction.org/tag/virus/) --- ### [political advocacy](https://www.mitoaction.org/tag/political-advocacy/) --- ### [Alaska](https://www.mitoaction.org/tag/alaska/) --- ### [melas](https://www.mitoaction.org/tag/melas/) --- ### [self care](https://www.mitoaction.org/tag/self-care/) --- ### [roundtable discussion](https://www.mitoaction.org/tag/roundtable-discussion/) --- ### [exercise](https://www.mitoaction.org/tag/exercise/) --- ### [strength](https://www.mitoaction.org/tag/strength/) --- ### [caretakers](https://www.mitoaction.org/tag/caretakers/) --- ### [beginners](https://www.mitoaction.org/tag/beginners/) --- ### [metabolism](https://www.mitoaction.org/tag/metabolism/) --- ### [mito classic](https://www.mitoaction.org/tag/mito-classic/) --- ### [event](https://www.mitoaction.org/tag/event/) --- ### [adulthood](https://www.mitoaction.org/tag/adulthood/) --- ### [medical marijuana](https://www.mitoaction.org/tag/medical-marijuana/) --- ### [healing](https://www.mitoaction.org/tag/healing/) --- ### [mitochondrial disease](https://www.mitoaction.org/tag/mitochondrial-disease/) --- ### [cell danger response](https://www.mitoaction.org/tag/cell-danger-response/) --- ### [angel flight](https://www.mitoaction.org/tag/angel-flight/) --- ### [travel](https://www.mitoaction.org/tag/travel/) --- ### [fda](https://www.mitoaction.org/tag/fda/) --- ### [MIDD](https://www.mitoaction.org/tag/midd/) --- ### [college](https://www.mitoaction.org/tag/college/) --- ### [education](https://www.mitoaction.org/tag/education/) --- ### [DNA](https://www.mitoaction.org/tag/dna/) --- ### [genes](https://www.mitoaction.org/tag/genes/) --- ### [mitochondrial health](https://www.mitoaction.org/tag/mitochondrial-health/) --- ### [POLG](https://www.mitoaction.org/tag/polg/) --- ### [mutations](https://www.mitoaction.org/tag/mutations/) --- ### [cyclic vomiting](https://www.mitoaction.org/tag/cyclic-vomiting/) --- ### [genetic testing](https://www.mitoaction.org/tag/genetic-testing/) --- ### [chronic fatigue](https://www.mitoaction.org/tag/chronic-fatigue/) --- ### [art](https://www.mitoaction.org/tag/art/) --- ### [CVS](https://www.mitoaction.org/tag/cvs/) --- ### [compounding](https://www.mitoaction.org/tag/compounding/) --- ### [compounded treatment](https://www.mitoaction.org/tag/compounded-treatment/) --- ### [treatment options](https://www.mitoaction.org/tag/treatment-options/) --- ### [DNA Analyzing](https://www.mitoaction.org/tag/dna-analyzing/) --- ### [testing](https://www.mitoaction.org/tag/testing/) --- ### [mito care](https://www.mitoaction.org/tag/mito-care/) --- ### [mitochondrial disease care](https://www.mitoaction.org/tag/mitochondrial-disease-care/) --- ### [expanded access](https://www.mitoaction.org/tag/expanded-access/) --- ### [compassionate use](https://www.mitoaction.org/tag/compassionate-use/) --- ### [experimental therapies](https://www.mitoaction.org/tag/experimental-therapies/) --- ### [patient support](https://www.mitoaction.org/tag/patient-support/) --- ### [hypoglycemia](https://www.mitoaction.org/tag/hypoglycemia/) --- ### [diabetes](https://www.mitoaction.org/tag/diabetes/) --- ### [pdcd](https://www.mitoaction.org/tag/pdcd/) --- ### [newborn screening](https://www.mitoaction.org/tag/newborn-screening/) --- ### [mito cocktail](https://www.mitoaction.org/tag/mito-cocktail/) --- ### [new treatment](https://www.mitoaction.org/tag/new-treatment/) --- ### [drug approval](https://www.mitoaction.org/tag/drug-approval/) --- ### [round table](https://www.mitoaction.org/tag/round-table/) --- ### [diagnosis journey](https://www.mitoaction.org/tag/diagnosis-journey/) --- ### [mitoartisan's playtime](https://www.mitoaction.org/tag/mitoartisans-playtime/) --- ### [pediatrician](https://www.mitoaction.org/tag/pediatrician/) --- ### [children](https://www.mitoaction.org/tag/children/) --- ### [nonprofits](https://www.mitoaction.org/tag/nonprofits/) --- ### [ketones](https://www.mitoaction.org/tag/ketones/) --- ### [FAOD support](https://www.mitoaction.org/tag/faod-support/) --- ### [therapy](https://www.mitoaction.org/tag/therapy/) --- ### [physical therapy](https://www.mitoaction.org/tag/physical-therapy/) --- ### [Cardiomyopathy](https://www.mitoaction.org/tag/cardiomyopathy/) --- ### [respiratory](https://www.mitoaction.org/tag/respiratory/) --- ### [airways](https://www.mitoaction.org/tag/airways/) --- ### [breathing](https://www.mitoaction.org/tag/breathing/) --- ### [service dog](https://www.mitoaction.org/tag/service-dog/) --- ### [rare genetic variants](https://www.mitoaction.org/tag/rare-genetic-variants/) --- ### [elamipretide](https://www.mitoaction.org/tag/elamipretide/) --- ### [nutrition](https://www.mitoaction.org/tag/nutrition/) --- ### [fatigue](https://www.mitoaction.org/tag/fatigue/) --- ### [cpeo](https://www.mitoaction.org/tag/cpeo/) --- ### [caregivers](https://www.mitoaction.org/tag/caregivers/) --- ### [mechanical ventilation](https://www.mitoaction.org/tag/mechanical-ventilation/) --- ### [respiratory support](https://www.mitoaction.org/tag/respiratory-support/) --- ### [hearing loss](https://www.mitoaction.org/tag/hearing-loss/) --- ### [augmentation technology](https://www.mitoaction.org/tag/augmentation-technology/) --- ### [muscle biopsy](https://www.mitoaction.org/tag/muscle-biopsy/) --- ### [pfdd](https://www.mitoaction.org/tag/pfdd/) --- ### [pfdd meetings](https://www.mitoaction.org/tag/pfdd-meetings/) --- ### [LCHAD retinopathy](https://www.mitoaction.org/tag/lchad-retinopathy/) --- ### [neuropathy](https://www.mitoaction.org/tag/neuropathy/) --- ### [Dysfunction](https://www.mitoaction.org/tag/dysfunction/) --- ### [insurance](https://www.mitoaction.org/tag/insurance/) --- ### [gastrointestinal motility](https://www.mitoaction.org/tag/gastrointestinal-motility/) --- ### [mitochondrial function](https://www.mitoaction.org/tag/mitochondrial-function/) --- ### [lactic acid](https://www.mitoaction.org/tag/lactic-acid/) --- ### [friendship](https://www.mitoaction.org/tag/friendship/) --- ### [hospital](https://www.mitoaction.org/tag/hospital/) --- ### [resources](https://www.mitoaction.org/tag/resources/) --- ### [CPK Meter](https://www.mitoaction.org/tag/cpk-meter/) --- ### [sleep](https://www.mitoaction.org/tag/sleep/) --- ### [Mighty Therapeutics](https://www.mitoaction.org/tag/mighty-therapeutics/) --- ### [Stealth BioTherapeutics](https://www.mitoaction.org/tag/stealth-biotherapeutics/) --- ### [FORZINITY](https://www.mitoaction.org/tag/forzinity/) --- ### [patient advice](https://www.mitoaction.org/tag/patient-advice/) --- ### [wellness](https://www.mitoaction.org/tag/wellness/) --- ### [Falcon Study](https://www.mitoaction.org/tag/falcon-study/) --- ### [NARP](https://www.mitoaction.org/tag/narp/) --- ### [Pretzel Therapeutics](https://www.mitoaction.org/tag/pretzel-therapeutics/) --- ### [POLARIS study](https://www.mitoaction.org/tag/polaris-study/) --- ### [PX578](https://www.mitoaction.org/tag/px578/) --- ### [Medicine](https://www.mitoaction.org/tag/medicine/) --- ### [United Mitochondrial Disease Foundation](https://www.mitoaction.org/tag/united-mitochondrial-disease-foundation/) --- ### [coalition](https://www.mitoaction.org/tag/coalition/) --- ### [BioSpace](https://www.mitoaction.org/tag/biospace/) --- ## Bio Types ### [Board of Directors](https://www.mitoaction.org/bio_type/board-of-directors/) --- ### [Medical Advisory Committee](https://www.mitoaction.org/bio_type/mac/) --- ### [Speaker](https://www.mitoaction.org/bio_type/speaker/) --- ### [Staff](https://www.mitoaction.org/bio_type/staff/) --- ## Resource Categories ### [Mitochondrial Medicine Society (MMS)](https://www.mitoaction.org/resources_category/mms/) --- ### [Advocacy](https://www.mitoaction.org/resources_category/advocacy/) --- ### [Autism](https://www.mitoaction.org/resources_category/autism/) --- ### [Cerebral Folate Deficiency](https://www.mitoaction.org/resources_category/cerebral-folate-deficiency/) --- ### [PANDAS](https://www.mitoaction.org/resources_category/pandas/) --- ### [Awareness](https://www.mitoaction.org/resources_category/awareness/) --- ### [Care Management](https://www.mitoaction.org/resources_category/care-management/) --- ### [Caregivers & Family](https://www.mitoaction.org/resources_category/caregivers-family/) --- ### [Clinical Trials](https://www.mitoaction.org/resources_category/clinical-trials/) --- ### [Mitochondrial Myopathy](https://www.mitoaction.org/resources_category/mitochondrial-myopathy/) --- ### [Day-to-Day with Mito](https://www.mitoaction.org/resources_category/day-to-day-with-mito/) --- ### [Diagnosis](https://www.mitoaction.org/resources_category/diagnosis/) --- ### [Dysmotility](https://www.mitoaction.org/resources_category/dysmotility/) --- ### [Insurance](https://www.mitoaction.org/resources_category/insurance/) --- ### [Dysautonomia](https://www.mitoaction.org/resources_category/dysautonomia/) --- ### [Estate Planning](https://www.mitoaction.org/resources_category/estate-planning/) --- ### [Exercise](https://www.mitoaction.org/resources_category/exercise/) --- ### [Fatty Acid Oxidation Disorder (FAOD)](https://www.mitoaction.org/resources_category/fatty-acid-oxidation-disorder-faod/) --- ### [Heat Intolerance](https://www.mitoaction.org/resources_category/heat-intolerance/) --- ### [Immune Function](https://www.mitoaction.org/resources_category/immune-function/) --- ### [Legislation](https://www.mitoaction.org/resources_category/legislation/) --- ### [Leighs Syndrome](https://www.mitoaction.org/resources_category/leighs-syndrome/) --- ### [Medical Child Abuse](https://www.mitoaction.org/resources_category/medical-child-abuse/) --- ### [Nutrition](https://www.mitoaction.org/resources_category/nutrition/) --- ### [Occupational Therapy](https://www.mitoaction.org/resources_category/occupational-therapy/) --- ### [Patient Stories](https://www.mitoaction.org/resources_category/patient-stories/) --- ### [Pyruvate Dehydrogenase Complex Deficiency (PCDC)](https://www.mitoaction.org/resources_category/pyruvate-dehydrogenase-complex-deficiency-pcdc/) --- ### [Psychology](https://www.mitoaction.org/resources_category/psychology/) --- ### [School Advocacy](https://www.mitoaction.org/resources_category/school-advocacy/) --- ### [Symptoms](https://www.mitoaction.org/resources_category/symptoms/) --- ### [Town Hall Meetings](https://www.mitoaction.org/resources_category/town-hall-meetings/) --- ### [Treatments](https://www.mitoaction.org/resources_category/treatments/) --- ### [Understanding Mito](https://www.mitoaction.org/resources_category/understanding-mito/) --- ### [Seizures](https://www.mitoaction.org/resources_category/seizures/) --- ### [Transitioning from Child to Adult Care](https://www.mitoaction.org/resources_category/transitioning-from-child-to-adult-care/) --- ### [AADC](https://www.mitoaction.org/resources_category/aadc/) --- ### [Research](https://www.mitoaction.org/resources_category/research/) --- ### [Cardiology](https://www.mitoaction.org/resources_category/cardiology/) --- ### [LCHADD Retinopathy](https://www.mitoaction.org/resources_category/lchadd-retinopathy/) --- ### [Genetic Counselors](https://www.mitoaction.org/resources_category/genetic-counselors/) --- ### [Genetic Testing](https://www.mitoaction.org/resources_category/genetic-testing/) --- ### [Grief](https://www.mitoaction.org/resources_category/grief/) --- ### [Diabetes](https://www.mitoaction.org/resources_category/diabetes/) --- ### [Aging](https://www.mitoaction.org/resources_category/aging/) --- ### [MELAS](https://www.mitoaction.org/resources_category/melas/) --- ### [rhabdomyolysis](https://www.mitoaction.org/resources_category/rhabdomyolysis/) --- ### [TK2d](https://www.mitoaction.org/resources_category/tk2d/) --- ### [School Planning](https://www.mitoaction.org/resources_category/school-planning/) --- ### [LHON](https://www.mitoaction.org/resources_category/lhon/) --- ### [Food and Drug Administration (FDA)](https://www.mitoaction.org/resources_category/food-and-drug-administration-fda/) --- ### [Therapy](https://www.mitoaction.org/resources_category/therapy/) --- ## Resource Type ### [Expert Series](https://www.mitoaction.org/resource_type/type-expert-series/) --- ### [IMC](https://www.mitoaction.org/resource_type/conference/) --- ### [Podcasts](https://www.mitoaction.org/resource_type/type-podcasts/) --- ### [FAOD Expert Series](https://www.mitoaction.org/resource_type/type-faod-expert-series/) --- ### [IMC 2022](https://www.mitoaction.org/resource_type/imc-2022/) --- ### [IMC 2021](https://www.mitoaction.org/resource_type/imc-2021/) --- ### [IMC 2020](https://www.mitoaction.org/resource_type/imc-2020/) --- ### [Wondering Wednesdays](https://www.mitoaction.org/resource_type/type-wondering-wednesdays/) --- ### [Support Calls](https://www.mitoaction.org/resource_type/support-calls/) --- ### [MitoSocials](https://www.mitoaction.org/resource_type/mitosocials/) --- ### [IMC 2023](https://www.mitoaction.org/resource_type/imc-2023/) --- ### [MitoArtisans Playtime](https://www.mitoaction.org/resource_type/mitoartisans-playtime/) --- ### [IMC 2024](https://www.mitoaction.org/resource_type/imc-2024/) --- ### [IMC 2025](https://www.mitoaction.org/resource_type/imc-2025/) --- ### [IMC 2026](https://www.mitoaction.org/resource_type/imc-2026/) --- ## Product categories ### [Team Caroline - Syracuse Energy Walk](https://www.mitoaction.org/product-category/team-caroline-energy-walk-syracuse/) --- ### [Awareness Week](https://www.mitoaction.org/product-category/awareness-week/) --- ### [Mito Awareness](https://www.mitoaction.org/product-category/mito-awareness/) --- ### [MitoAction](https://www.mitoaction.org/product-category/mitoaction/) --- ### [Liney's Lovies](https://www.mitoaction.org/product-category/lineys-lovies/) --- ### [Team MitoAction](https://www.mitoaction.org/product-category/team-mitoaction/) --- ### [FAOD Awareness](https://www.mitoaction.org/product-category/faod-awareness/) --- ### [Another Helping](https://www.mitoaction.org/product-category/another-helping/) --- ## Event Categories ### [Weekly Support Calls](https://www.mitoaction.org/calendar/category/weekly-support-calls/) --- ### [Monthly Expert Series](https://www.mitoaction.org/calendar/category/monthly-expert-series/) --- ### [Patient Support](https://www.mitoaction.org/calendar/category/patient-support/) --- ### [Events](https://www.mitoaction.org/calendar/category/events/) --- ### [MitoSocials](https://www.mitoaction.org/calendar/category/mitosocials/) --- ### [FAOD Monthly Support Call](https://www.mitoaction.org/calendar/category/faod-monthly-support-call/) --- ### [Men’s Support Call](https://www.mitoaction.org/calendar/category/mens-support-call/) --- ### [Energy Walk](https://www.mitoaction.org/calendar/category/energy-walk/) --- ### [Matthew Harty Golf Tournament](https://www.mitoaction.org/calendar/category/matthew-harty-golf-tournament/) --- ### [FAOD Monthly Expert Series](https://www.mitoaction.org/calendar/category/faod-monthly-expert-series/) --- ### [Wondering Wednesdays](https://www.mitoaction.org/calendar/category/wondering-wednesdays/) --- ### [MitoChampion](https://www.mitoaction.org/calendar/category/mitochampion/) --- ### [Our Space](https://www.mitoaction.org/calendar/category/our-space/) --- ### [Support Calls](https://www.mitoaction.org/calendar/category/support-calls/) --- ### [Awareness Week](https://www.mitoaction.org/calendar/category/awareness-week/) --- ### [Holiday](https://www.mitoaction.org/calendar/category/holiday/) --- ### [CPEO & Me Support Call](https://www.mitoaction.org/calendar/category/cpeo-me/) --- ### [MitoArtisan's Playtime](https://www.mitoaction.org/calendar/category/mitoartisans-playtime/) --- ### [Awareness](https://www.mitoaction.org/calendar/category/awareness/) --- ### [IMC Conference](https://www.mitoaction.org/calendar/category/conference/) --- ### [IMC Conference Session](https://www.mitoaction.org/calendar/category/conference/imc-conference-session/) --- ### [POLG Support Call](https://www.mitoaction.org/calendar/category/polg-support-call/) --- ### [Conferences](https://www.mitoaction.org/calendar/category/conferences/) --- ### [MELAS Support Call](https://www.mitoaction.org/calendar/category/melas-support-call/) --- ### [IMC Pre-Conference Session](https://www.mitoaction.org/calendar/category/conference/imc-pre-conference-session/) ---