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# MitoAction

Support, Education, Outreach and Advocacy for Children and Adults Living with Mitochondrial Disease

## Sitemaps

- [XML Sitemap](https://www.mitoaction.org/sitemap.xml): Contains all public & indexable URLs for this website.

## Posts

- [News](https://www.mitoaction.org/news/)
- [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/) - 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
- [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 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
- [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/) - March 31, 2026 Dear Members of the PDCD Community, We are deeply grateful for your support and advocacy throughout this process, particularly aswe have worked to navigate the FDA’s Complete Response Letter and identify a path forwardfor SL1009 (DCA). Over the past several months, this community has shown up in meaningfulways by sharing your stories,
- [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/) - FOR IMMEDIATE RELEASE Contact:Emily GrandahlMarketing Coordinator, MitoActionemily@mitoaction.org(888) 648-6228www.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
- [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/) - Originally Published by Tisento Therapeutics 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 in MELAS (Mitochondrial Encephalomyopathy, Lactic Acidosis, and Stroke-like Episodes) were published on October 27, 2025,
- [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/) - “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 to read the full press release from Stealth Biotherapeutics
- [BPGbio Sponsors MitoAction Energy Walk at Boston’s Franklin Park Zoo on September 27th, 2025](https://www.mitoaction.org/bpgbio-sponsors-mitoaction-energy-walk/) - 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
- [FDA denies approval for dichloroacetate (DCA), a treatment for Pyruvate Dehydrogenase Complex Deficiency (PDCD).](https://www.mitoaction.org/fda-denies-approval-for-dca/) - FDA denies approval for DCA, a treatment for PDCD. We have joined with fellow PDCD and mito patient advocacy groups to issue a statement and call to action.
- [MitoAction Advocates for Barth Syndrome Community in FDA Listening Session](https://www.mitoaction.org/mitoaction-advocates-for-barth-syndrome-community-in-fda-listening-session/) - MitoAction recently held 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 challenges faced by the Barth syndrome community.
- [Mitochondrial Disease Researchers Win Major Award](https://www.mitoaction.org/mitochondrial-disease-researchers-win-major-award/) - 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
- [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/) - 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
- [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/) - 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 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
- [The Multiple Roles of Mitochondria in Disease - A  Synopsis](https://www.mitoaction.org/the-multiple-roles-of-mitochondria-in-disease-a-synopsis/) - 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
- [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/) - 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
- [A novel, brutally clever approach to ameliorating mitochondrial disease](https://www.mitoaction.org/a-novel-general-therapeutic-approach-for-ameliorating-mitochondrial-disease/) - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10183817/ https://pubmed.ncbi.nlm.nih.gov/37021792/ 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
- [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/) - https://www.frontiersin.org/articles/10.3389/fcell.2021.767407/full 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
- [Stand Up For Family Rights](https://www.mitoaction.org/stand-up-for-family-rights/) - 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 statementAfter 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
- [Caroline Payne](https://www.mitoaction.org/caroline-payne/) - 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.
- [Lillian DeJean](https://www.mitoaction.org/lillian-dejean/) - 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
- [Exenatide Therapy Increases Key Frataxin Protein Levels, Study Finds](https://www.mitoaction.org/exenatide-therapy-increases-key-frataxin-protein-levels-study-finds-2/) - 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
- [New Mitochondrial Gene Mutation Speeds GRACILE Progression, Study Shows](https://www.mitoaction.org/new-mitochondrial-gene-mutation-speeds-gracile-progression-study-shows/) - 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
- [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/) - 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 [...]
- [Boosting Damaged Nerves' Energy Levels Could Help Them Heal](https://www.mitoaction.org/boosting-damaged-nerves-energy-levels-could-help-them-heal/) - 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
- [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/) - 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
- [Antioxidant derived from mushrooms may be beneficial in treating preeclampsia](https://www.mitoaction.org/antioxidant-derived-from-mushrooms-may-be-beneficial-in-treating-preeclampsia/) - 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
- [X-ray microscopy at BESSY II: Nanoparticles can change cells](https://www.mitoaction.org/x-ray-microscopy-at-bessy-ii-nanoparticles-can-change-cells/) - 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
- [Precision medicine treatments for Parkinson's disease closer to reality](https://www.mitoaction.org/precision-medicine-treatments-for-parkinsons-disease-closer-to-reality/) - 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 [...]
- [Mass General researchers find clue in attempt to understand autism](https://www.mitoaction.org/mass-general-researchers-find-clue-in-attempt-to-understand-autism/) - 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
- [Transporter mutation alters cell energy](https://www.mitoaction.org/transporter-mutation-alters-cell-energy/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [Unlocking how cells regulate energy production](https://www.mitoaction.org/unlocking-how-cells-regulate-energy-production/) - 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
- [Unexpected insights into the dynamic structure of mitochondria](https://www.mitoaction.org/unexpected-insights-into-the-dynamic-structure-of-mitochondria/) - 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
- [Yale researchers help restore hormonal balance disrupted in metabolic diseases](https://www.mitoaction.org/yale-researchers-help-restore-hormonal-balance-disrupted-in-metabolic-diseases/) - 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) [...]
- [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/) - 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
- [Sandra's Story](https://www.mitoaction.org/sandras-story/) - 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
- [Know thy mitochondria: Autoimmunity to organelles and their DNA](https://www.mitoaction.org/know-thy-mitochondria-autoimmunity-to-organelles-and-their-dna-3/) - 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
- [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/) - 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
- [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/) - 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
- [Experimental therapy may offer hope for rare genetic disorders](https://www.mitoaction.org/experimental-therapy-may-offer-hope-for-rare-genetic-disorders/) - 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,
- [CRISPR gene-editing corrects muscular dystrophy in pigs](https://www.mitoaction.org/crispr-gene-editing-corrects-muscular-dystrophy-in-pigs-2/) - 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
- [Cerrutis Craft a Way to Raise Mito Awareness](https://www.mitoaction.org/cerrutis-craft-a-way-to-raise-mito-awareness/) - 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
- [On the Wings of Hope](https://www.mitoaction.org/on-the-wings-of-hope/) - 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
- [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/) - "Hot off the press!" The new, updated list of medicines to be used with caution in mitochondrial disease 2020 Suggestions: 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).Print this list, keep
- [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/) - 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
- [Marquis Family Fighting for Little Miss Roo](https://www.mitoaction.org/marquis-family-fighting-for-little-miss-roo/) - 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,
- [Team Lissy Loo Creates Colorful Fundraiser](https://www.mitoaction.org/team-lissy-loo-creates-colorful-fundraiser/) - 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,
- [Correcting Barth Syndrome With Gene Therapy](https://www.mitoaction.org/correcting-barth-syndrome-with-gene-therapy/) - 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
- [Team supercharged cells with mitochondrial transplantation](https://www.mitoaction.org/team-supercharged-cells-with-mitochondrial-transplantation/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [Study Provides Insights Into How Cells Defend Themselves From Viruses](https://www.mitoaction.org/study-provides-insights-into-how-cells-defend-themselves-from-viruses/) - 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
- [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/) - 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 [...]
- [MOF delivers cancer drug candidate straight to mitochondria](https://www.mitoaction.org/mof-delivers-cancer-drug-candidate-straight-to-mitochondria/) - 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
- [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/) - 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
- [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/) - 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
- [Link between blood vessel inflammation, malfunctioning cellular powerhouses](https://www.mitoaction.org/link-between-blood-vessel-inflammation-malfunctioning-cellular-powerhouses/) - 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
- [Vitamin B3 Has Therapeutic Effect in Progressive Muscle Disease](https://www.mitoaction.org/vitamin-b3-has-therapeutic-effect-in-progressive-muscle-disease/) - 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
- [Mitochondrial Pathways Not the Culprit in Bortezomib Neurotoxicity, Study Finds](https://www.mitoaction.org/mitochondrial-pathways-not-the-culprit-in-bortezomib-neurotoxicity-study-finds/) - 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
- [Metabolic stroke or stroke-like lesion: Peculiarities of a phenomenon](https://www.mitoaction.org/metabolic-stroke-or-stroke-like-lesion-peculiarities-of-a-phenomenon/) - 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
- [First Simulation of a Full-Sized Mitochondrial Membrane](https://www.mitoaction.org/first-simulation-of-a-full-sized-mitochondrial-membrane-2/) - 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
- [Study Illuminates the Role of Mitochondria in Neurodegeneration](https://www.mitoaction.org/study-illuminates-the-role-of-mitochondria-in-neurodegeneration/) - 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
- [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/) - 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 [...]
- [Ultrasound May Help Assess Diaphragm Dysfunction in LOPD Patients](https://www.mitoaction.org/ultrasound-may-help-assess-diaphragm-dysfunction-in-lopd-patients/) - 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 [...]
- [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/) - 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
- [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/) - 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,
- [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/) - 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
- [Study reveals importance of mitochondrial small proteins in energy production](https://www.mitoaction.org/study-reveals-importance-of-mitochondrial-small-proteins-in-energy-production/) - 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
- [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/) - 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 [...]
- [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/) - 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
- [Mitochondria Transplant Could Someday Be Viable Treatment Option, Study Shows](https://www.mitoaction.org/mitochondria-transplant-could-someday-be-viable-treatment-option-study-shows/) - 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
- [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/) - 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
- [Single-cell analysis provides new insights into mitochondrial diseases](https://www.mitoaction.org/single-cell-analysis-provides-new-insights-into-mitochondrial-diseases/) - 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
- [Essential function for histones: making copper accessible](https://www.mitoaction.org/study-pinpoints-new-function-for-histones/) - 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
- [COVID-19: Mitochondria’s Pivotal Role in COVID-19.](https://www.mitoaction.org/covid-19-mitochondrias-pivotal-role-in-covid-19-3/) - 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 [...]
- [Study unveils the role of mitochondria in combating Salmonella](https://www.mitoaction.org/study-unveils-the-role-of-mitochondria-in-combating-typhoid-fever/) - 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
- [Single cells have their own defenses against pathogens](https://www.mitoaction.org/single-cells-have-their-own-defenses-against-pathogens/) - 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 [...]
- [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/) - 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
- [Simple change to microscope opens up complex panorama of cells](https://www.mitoaction.org/simple-change-to-microscope-opens-up-complex-panorama-of-cells/) - 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
- [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/) - 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
- [Becoming a nerve cell: Timing is of the essence](https://www.mitoaction.org/becoming-a-nerve-cell-timing-is-of-the-essence/) - 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
- [Nerve Cells Can Circumvent Mitochondrial Damage with Metabolic Rewiring](https://www.mitoaction.org/nerve-cells-can-circumvent-mitochondrial-damage-with-metabolic-rewiring/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [COVID-19: Mitochondria and the Immune System](https://www.mitoaction.org/covid-19-mitochondria-and-the-immune-system-3/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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,
- [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/) - 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
- [Activated Charcoal Can Be Used to Treat Injuries, Stroke & Coronavirus](https://www.mitoaction.org/activated-charcoal-can-be-used-to-treat-injuries-stroke-coronavirus/) - 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
- [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/) - 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
- [New link between calcium and cardiolipin in heart defects](https://www.mitoaction.org/new-link-between-calcium-and-cardiolipin-in-heart-defects/) - 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
- [Surprising features of mitochondrial protein synthesis uncovered](https://www.mitoaction.org/surprising-features-of-mitochondrial-protein-synthesis-uncovered/) - 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
- [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/) - 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
- [First successful delivery of mitochondria to liver cells in animals](https://www.mitoaction.org/first-successful-delivery-of-mitochondria-to-liver-cells-in-animals/) - 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
- [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/) - 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
- [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/) - 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 [...]
- [Problems with Mitochondria of Neurons May Underlie CMTX6, Study Finds](https://www.mitoaction.org/problems-with-mitochondria-of-neurons-may-underlie-cmtx6-study-finds/) - 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
- [Reducing proton leak restores function in aging heart cells](https://www.mitoaction.org/reducing-proton-leak-restores-function-in-aging-heart-cells/) - 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
- [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/) - 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
- [Pediatric mitochondrial disease and COVID-19 FAQ](https://www.mitoaction.org/pediatric-mitochondrial-disease-and-covid-19-faq/) - What is pediatric mitochondrial disease? How does the COVID-19 pandemic affect children with this disease? Click here to read the full article written by Dr. Peter McGuire at the NIH National Human Genome Research Institute.
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [Gene Therapy Injection in One Eye Improves Vision in Both](https://www.mitoaction.org/gene-therapy-injection-in-one-eye-improves-vision-in-both/) - 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
- [Researchers find effective combination of therapies for managing mitochondrial disease](https://www.mitoaction.org/researchers-find-effective-combination-of-therapies-for-managing-mitochondrial-disease/) - 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
- [Spaceflight Impairs Mitochondrial Function, New Research Shows](https://www.mitoaction.org/spaceflight-impairs-mitochondrial-function-new-research-shows/) - 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. [...]
- [Researchers discover novel mechanism by which cells turn over mitochondria](https://www.mitoaction.org/researchers-discover-novel-mechanism-by-which-cells-turn-over-mitochondria/) - 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
- [High-Throughput Mitochondria Transfer Device Developed](https://www.mitoaction.org/high-throughput-mitochondria-transfer-device-developed/) - 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
- [Metabolism May Play Role in Recurrent Major Depression](https://www.mitoaction.org/metabolism-may-play-role-in-recurrent-major-depression/) - 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.
- [Decades-Old Mitochondrial Mystery Could Lead To New Disease Treatments](https://www.mitoaction.org/decades-old-mitochondrial-mystery-could-lead-to-new-disease-treatments/) - 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
- ['Cheater mitochondria' may profit from cellular stress coping mechanisms](https://www.mitoaction.org/cheater-mitochondria-may-profit-from-cellular-stress-coping-mechanisms/) - 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
- [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/) - 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
- [How Covid-19 is changing rare diseases research](https://www.mitoaction.org/how-covid-19-is-changing-rare-diseases-research/) - 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 Mar 9, 2021 at 5:13 PM Twenty years after researchers published their first discoveries associated with human
- [Inside mitochondria and their fascinating genome](https://www.mitoaction.org/inside-mitochondria-and-their-fascinating-genome/) - 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
- [Gut Microbiome Analysis in Autistic Children Points to Detoxification Deficiencies](https://www.mitoaction.org/gut-microbiome-analysis-in-autistic-children-points-to-detoxification-deficiencies/) - 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
- [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/) - 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
- [Genetic mutation may accelerate heart function decline in DMD patients](https://www.mitoaction.org/genetic-mutation-may-accelerate-heart-function-decline-in-dmd-patients/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [Mitochondrial Retrieval Is Critical to Sustaining Neuron Communication](https://www.mitoaction.org/mitochondrial-retrieval-is-critical-to-sustaining-neuron-communication/) - 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
- [Teachings from COVID‐19 and aging—An oxidative process](https://www.mitoaction.org/teachings-from-covid‐19-and-aging-an-oxidative-process-2/) - 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
- [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/) - 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
- [Can Red Light Exposure Improve Eyesight?](https://www.mitoaction.org/can-red-light-exposure-improve-eyesight/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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 PhiladelphiaContact Patient Services Newswise — Philadelphia, January 25, 2022 – Researchers from the Mitochondrial Medicine
- [New method reveals how Parkinson's protein damages cell membranes](https://www.mitoaction.org/new-method-reveals-how-parkinsons-protein-damages-cell-membranes/) - 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
- [Metabolic Rewiring: Nerve Cells With Energy Saving Program](https://www.mitoaction.org/metabolic-rewiring-nerve-cells-with-energy-saving-program/) - 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
- [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/) - 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
- [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 on Jan 25, 2022 in CHOP News Researchers from the Mitochondrial Medicine Frontier Program 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) at CHOP, provides important information as to whether and to what level variations in the mtDNA are
- [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/) - 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
- [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/) - 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
- [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/) - 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 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
- [Muscle Weakness Tied to Poor Mitochondria Function](https://www.mitoaction.org/muscle-weakness-tied-to-poor-mitochondria-function/) - Poorly working mitochondria — small energy-producing cell compartments — may drive muscle weakness or wasting in a new mouse model of 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
- [Vitamin D Deficiency Can Impair Muscle Function](https://www.mitoaction.org/vitamin-d-deficiency-can-impair-muscle-function/) - 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
- [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/) - 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
- [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/) - 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.
- [Counselors Lift up this Mito Camper](https://www.mitoaction.org/counselors-lift-up-this-mito-camper/) - 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
- [Students Learn About Mito](https://www.mitoaction.org/students-learn-about-mito/) - 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
- [Brother with Mito Inspires Toy Design Project](https://www.mitoaction.org/brother-with-mito-inspires-toy-design-project/) - 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
- [Nadrich Sisters Feel the Magic of Double H Ranch](https://www.mitoaction.org/nadrich-sisters-feel-the-magic-of-double-h-ranch/) - 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
- [Brionna](https://www.mitoaction.org/brionna/) - 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
- [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/) - 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
- [MitoAction's Statement on Nationwide Closures of Mitochondrial Disease Clinics](https://www.mitoaction.org/mitoactions-statement-on-nationwide-closures-of-mitochondrial-disease-clinics/) - 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
- [Kayla West Uses Pageant Platform to Raise Mito Awareness](https://www.mitoaction.org/kayla-west-uses-pageant-platform-to-raise-mito-awareness/) - 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,
- [Bride Raises Mito Awareness](https://www.mitoaction.org/bride-raises-mito-awareness/) - 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
- [This Daredevil Inspires His Team](https://www.mitoaction.org/this-daredevil-inspires-his-team/) - 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
- [Eric Harty Works His Magic with Metal](https://www.mitoaction.org/eric-harty-works-his-magic-with-metal/) - 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
- [Mito "Maine"-iacs Captain Feels Freedom at Walk](https://www.mitoaction.org/mito-maine-iacs-captain-feels-freedom-at-walk/) - 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
- [9-Year-Old Mito Warrior on a Mission](https://www.mitoaction.org/9-year-old-mito-warrior-on-a-mission/) - 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
- [Erica Blanchette Defining Her Career Path](https://www.mitoaction.org/erica-blanchette-defining-her-career-path/) - 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
- [Walk Will be Emotional for New Mito Mom](https://www.mitoaction.org/walk-will-be-emotional-for-new-mito-mom/) - 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

## Pages

- [Homepage](https://www.mitoaction.org/) - MitoAction improves the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach and advocacy.
- [Energy Walk - Boston, MA](https://www.mitoaction.org/events/energywalk/energywalkboston/) - Energy Walks MitoAction Energy Walk — Boston, MA Join us to raise awareness and funds for mito—one step at a time! 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
- [Energy Walk - Rochester, NY](https://www.mitoaction.org/events/energywalk/energywalkrochester/) - Energy Walks MitoAction Energy Walk & 5k — Rochester, NY Join us to raise awareness and funds for mito—one step at a time! RESCHEDULED for Sunday, September 27, 2026 Basil Marella Park, 975 English Rd, Rochester, NY 14626 Join our hosts, Stacy, her cousins Kate and Erin, and the Bellaire Family as they work together
- [MitoAction Energy Walk](https://www.mitoaction.org/events/energywalk/) - Rochester, NY RESCHEDULED New Date: Sunday, September 27, 2026Basil Marella Park975 English RdRochester, NY 14626 Learn More Register Now Alvin, TX Saturday, August 15, 2026Living Stones ChurchVictory Ln #1407Alvin, TX 77511 Learn More Register Now Tallahassee, FL Saturday, September 19, 2026Alfred B. Mclay Gardens State Park3540 Thomasville RdTallahassee, FL 32309 Learn More Register Now Boston,
- [Energy Walk and 5K - Syracuse, NY](https://www.mitoaction.org/events/energywalk/energywalksyracuse/) - Energy Walks MitoAction Energy Walk — Syracuse, NY Join us to raise awareness and funds for mito—one step at a time! 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
- [MitoAction Educational Series for Genetic Counselors](https://www.mitoaction.org/for-medical-professionals/mitoaction-educational-series-for-genetic-counselors/) - 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! This is a nine part virtual webinar series designed to prepare genetic counselors and other
- [Mitochondrial Disease Awareness Week](https://www.mitoaction.org/join-the-cause/raise-your-voice/awareness-week/) - Back to 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! 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
- [TK2d Awareness Day](https://www.mitoaction.org/join-the-cause/raise-your-voice/awareness-week/tk2d-awareness-week/) - 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. TK2D Graphics in
- [Patient & Family Support](https://www.mitoaction.org/programs-support/patient-and-family-support/) - MitoAction Patient & Family Support allows mito patients and family members to connect with each other and create lasting personal relationships.
- [Matthew Harty Golf Tournament](https://www.mitoaction.org/events/matthew-harty-golf-tournament/) - The Matthew Harty Golf Tournament plays an essential role in supporting the Matthew Harty Camper Fund, the Matthew Harty Scholarship Fund and Wish Trips.
- [International Metabolic Conference](https://www.mitoaction.org/events/internationalmetabolicconference/) - 2026 International Metabolic Conference For Families & Individuals Impacted by Fatty Acid Oxidation Disorders Virtual Conference July 25-26, 2026 Register Now! 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,
- [Matthew Harty Camper Fund Scholarship](https://www.mitoaction.org/programs-support/mitoaction-programs/mhcf/scholarship/) - 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
- [Energy Walk – Tallahassee, FL](https://www.mitoaction.org/events/energywalk/energy-walk-tallahassee-fl/) - Energy Walks MitoAction Energy Walk — Tallahassee, FL Join us to raise awareness and funds for mito—one step at a time! Saturday, September 19, 2026 Alfred B. Mclay Gardens State Park3540 Thomasville RdTallahassee, FL 32309 Gather your team and get ready to go for a walk while raising awareness for mitochondrial disease! Whether you walk
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- [Thanks for Registering with MyMito](https://www.mitoaction.org/mymito/thanks-for-registering-with-mymito/) - 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 info@mitoaction.org.
- [Energy Walk - Perris, CA](https://www.mitoaction.org/events/energywalk/energy-walk-perris-ca/) - Energy Walks MitoAction Energy Walk — Perris, CA Join us to raise awareness and funds for mito—one step at a time! 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
- [Sponsors](https://www.mitoaction.org/events/internationalmetabolicconference/sponsors/) - Sponsors & Exhibitors Special thanks to the sponsors of the International Metabolic Conference for Fatty Acid Oxidation Disorders. Presenting Sponsor Gold Sponsor Silver Sponsor Bronze Sponsor Exhibitors
- [For Medical Professionals](https://www.mitoaction.org/for-medical-professionals/) - 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
- [Energy Walk - Alvin, TX](https://www.mitoaction.org/events/energywalk/energy-walk-alvin-tx/) - Energy Walks MitoAction Energy Walk — Alvin, TX Join us to raise awareness and funds for mito—one step at a time! Saturday, August 15, 2026 Living Stones ChurchVictory Ln #1407Alvin, 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,
- [Dalia's Wish](https://www.mitoaction.org/programs-support/mitoaction-programs/dalias-wish/) - Dalia’s Wish 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
- [Speakers](https://www.mitoaction.org/events/internationalmetabolicconference/speakers/) - 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.
- [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/) - Back to PFDD Meetings Externally Led Patient-Focused Drug Development Meeting on POLG MitoAction is honored to host a Patient-Focused Drug Development (PFDD) meeting focused on POLG. MitoAction is honored to host an Externally Led Patient-Focused Drug Development (PFDD) meeting focused on POLG-Related Disorders. This meeting is open to all members of the mitochondrial disease community,
- [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/) - Back to PFDD Meetings Externally Led Patient-Focused Drug Development Meeting on PCQD MitoAction is honored to host a Patient-Focused Drug Development (PFDD) meeting focused on PCQD. MitoAction is honored to host an Externally Led Patient-Focused Drug Development (PFDD) meeting focused on Primary CoQ10 Deficiency (PCQD). This meeting is open to all members of the mitochondrial
- [Sandra K. Russell Derby Day Benefit for Mito](https://www.mitoaction.org/events/derbyday/) - Back to 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. This year, we celebrated the final Sandra K. Russell Derby Day Benefit for Mito.
- [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/) - MitoAction PFDD Press Release Tisento Press Release About MELAS Resources Video Recording of the Meeting Voice of the Patient Report (coming soon) Advocacy Partners Program Sponsors 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
- [Agenda](https://www.mitoaction.org/events/internationalmetabolicconference/imc-agenda/) - 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 Saturday, July 25 Sunday, July 26
- [Externally Led Patient-Focused Drug Development Meetings](https://www.mitoaction.org/join-the-cause/patient-focused-drug-development-meetings/) - 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. 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
- [Support Calls](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/) - Patient & Family Support 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. Through our many support call avenues, MitoAction
- [Support Team MitoAction!](https://www.mitoaction.org/join-the-cause/giving/support-team-mitoaction/) - Back to Giving 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. 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
- [Mitochondrial Disease Treatment](https://www.mitoaction.org/mitochondrial-disease/treatment/) - 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. Mitochondrial disease is a group of genetic disorders caused by dysfunctional mitochondria, so treatment options vary depending on the type mitochondrial disease and the
- [Mitochondrial Transplantation](https://www.mitoaction.org/mitochondrial-disease/treatment/mitochondrial-transplantation/) - 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. 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
- [Current FDA-Approved Treatments for Mitochondrial Disease](https://www.mitoaction.org/mitochondrial-disease/treatment/current-fda-approved-treatments-for-mitochondrial-disease/) - Back to Mitochondrial Disease Treatments Current FDA-Approved Treatments for Mitochondrial Disease There are now FDA-approved treatments for some mitochondrial diseases on the market. 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
- [Matthew Harty Mito Classic](https://www.mitoaction.org/events/matthew-harty-mito-classic/) - The Matthew Harty Mito Classic is street hockey tournament that brings middle and high school kids together to raise awareness for mitochondrial diseases.
- [Another Helping](https://www.mitoaction.org/join-the-cause/giving/anotherhelping/) - Back to Giving Another Helping Help raise awareness and money for Dalia’s Wish, one cupcake at a time! Order / Donate 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,
- [Donate to MitoAction](https://www.mitoaction.org/join-the-cause/giving/donate/) - Back to Giving Donate to MitoAction Your gift supports children, adults and families affected by mitochondrial disease! Make a Donation 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: https://p2p.onecause.com/supportmitoaction Donate by
- [FAOD Life Hacks](https://www.mitoaction.org/fatty-acid-oxidation-disorders/day-to-day-with-faod/faod-life-hacks/) - My "Go Bag" by Stella Mudd (LCHADD), Sharickah and Canaan Rogers (VLCADD), and Alex Salser (LCHADD) Travel Hacks by Stephanie and Christopher Harry (LCHADD), Luke Folcher (LCHADD), and Sharickah and Canaan Rogers (VLCADD) Easy Bake Cooking by Stella Mudd (LCHADD) My favorite thing to do is … by Luke Folcher (LCHADD), Canaan Rogers (VLCADD), Alexis
- [Exercise with Mito](https://www.mitoaction.org/day-to-day-with-mito/exercise-with-mito/) - 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
- [Matthew Harty Camper Fund Scholarship Application](https://www.mitoaction.org/programs-support/mitoaction-programs/mhcf/scholarship/matthew-harty-scholarship-application/)
- [CPEO & Me Support Call](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/cpeo-me-support-call/) - 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 &
- [MELAS Support Call](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/melas-support-call/) - 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
- [POLG Support Calls](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/polg-support-calls/) - 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
- [Our Space: A Space for Young Adults](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/our-space/) - 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
- [Open Mito Mic & Art Show](https://www.mitoaction.org/join-the-cause/raise-your-voice/open-mito-mic-art-show/) - 2025 2024 2023 For more information and any inquiries, please email sharry@mitoaction.org. Email for Art Show Inquiries!
- [Clinical Trials & Studies](https://www.mitoaction.org/clinicaltrials/) - 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
- [2025 MitoSantas Application](https://www.mitoaction.org/programs-support/mitoaction-programs/mito-santas/2025-mitosantas-application/) - 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. Be very specific in your wish list for each child. This will help make shopping easier for our elves! Applications
- [MitoSantas](https://www.mitoaction.org/programs-support/mitoaction-programs/mito-santas/) - MitoAction Programs 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! 2025 MitoSantas Application Bringing smiles to the faces of children affected by mitochondrial disease and easing the stress of parents during the holiday season! MitoSantas was founded
- [Types of FAOD](https://www.mitoaction.org/fatty-acid-oxidation-disorders/types-of-faod/) - 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
- [Social Media Graphics](https://www.mitoaction.org/join-the-cause/raise-your-voice/awareness-week/mito-facts/) - 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. This year, most key messages are made up of multiple images, which you should post as a gallery or
- [Take Legislative Action](https://www.mitoaction.org/join-the-cause/raise-your-voice/take-legislative-action/) - Back to 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. Taking legislative action can be intimidating and often serves as a barrier for people who want
- [FAOD Resources](https://www.mitoaction.org/fatty-acid-oxidation-disorders/day-to-day-with-faod/faod-resources/) - Back to 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. No matter where you are on your journey with Fatty Acid Oxidation Disorder, MitoAction is committed to connecting you with the
- [Travel](https://www.mitoaction.org/events/internationalmetabolicconference/travel/) - 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 Things to Do Restaurants IMC Scholarship The IMC Scholarship is available to help cover travel costs to the conference
- [Camp Opportunities](https://www.mitoaction.org/programs-support/mitoaction-programs/mhcf/camp-opportunities/) - 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. Each of these camps are part of the nationally accredited SeriousFun camp network,
- [Dalia's Wish Trip Nomination](https://www.mitoaction.org/dalias-wish-trip-nomination/)
- [2025 IMC Scholarship Application](https://www.mitoaction.org/events/internationalmetabolicconference/imc-scholarship-application/) - 2024 IMC Scholarship Applications are open until April 30, 2024.
- [Mito Resources](https://www.mitoaction.org/day-to-day-with-mito/mito-resources/) - Back to 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. No matter where you are on your journey with mitochondrial disease, MitoAction is committed to connecting you with the most comprehensive resources
- [Men's Support Calls](https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/mens-support-calls/) - 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
- [Mitochondrial Transplantation: Community Perspectives Survey](https://www.mitoaction.org/mitochondrial-transplantation-community-perspectives-survey/) - 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/) - 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
- [Mitochondrial Disease Symptoms](https://www.mitoaction.org/mitochondrial-disease/symptoms/) - 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. Mitochondrial diseases are a varied group of disorders characterized by impaired energy production. The symptoms of mitochondrial disease can arise in
- [Day to Day with FAOD](https://www.mitoaction.org/fatty-acid-oxidation-disorders/day-to-day-with-faod/) - 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
- [2025 IMC Post-Conference Survey](https://www.mitoaction.org/events/internationalmetabolicconference/imc-post-conference-survey/) - 2025 IMC Post-Conference Survey
- [2025 International Metabolic Conference Speaker Logistics and Travel Information](https://www.mitoaction.org/events/internationalmetabolicconference/imc-speaker-logistics-travel/) - 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.).
- [Thanks for Submitting Your Information for IMC](https://www.mitoaction.org/events/internationalmetabolicconference/imc-speaker-logistics-travel/thanks-for-submitting-your-information-for-imc/) - 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 sharry@mitoaction.org.
- [Traveling with Mito](https://www.mitoaction.org/day-to-day-with-mito/traveling-with-mito/) - Back to 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. 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
- [Care Coordination & Management](https://www.mitoaction.org/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 it usually becomes the responsibility of the patient or caregiver.
- [Parents and Caregivers of Children with Mito](https://www.mitoaction.org/day-to-day-with-mito/parents-and-caregivers/) - Back to 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. 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
- [Mito Life Hacks](https://www.mitoaction.org/day-to-day-with-mito/mito-life-hacks/) - Using Facebook by Bill Ness Work Tip by Rachel Wilson Self Esteem and Self Acceptance by Rachel Wilson Travel tips by Stephanie Harry Hospital Hack by Alex Salser Feel the Feelings and Mobility Aids by Adam Johnson How to Research your Doctor by Bill Ness Exercise Tips by Ali Hamadeh Tips and Tricks in the
- [Day to Day with Mito](https://www.mitoaction.org/day-to-day-with-mito/) - 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
- [Holiday Tips](https://www.mitoaction.org/day-to-day-with-mito/holiday-tips/) - 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
- [Mitochondrial Disease](https://www.mitoaction.org/mitochondrial-disease/) - 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;
- [Honor and Memorial Giving](https://www.mitoaction.org/join-the-cause/giving/honor-memorial/) - Back to 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 Honor or memorial gifts are a wonderful way to celebrate someone living with mitochondrial disease or to commemorate a loved one lost to this
- [Matching Gifts](https://www.mitoaction.org/join-the-cause/giving/matching-gifts/) - Back to Giving Matching Gifts Does your employer match gifts their employees make to non-profit organizations? Many do. 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. If you volunteer with us, your employer may also provide us with a grant
- [Giving Tuesday](https://www.mitoaction.org/join-the-cause/giving/giving-tuesday/) - Back to Giving Giving Tuesday Hope in Action with MitoActionJoin the Journey Donate 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
- [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. 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 or shopping at one
- [Matthew Harty Camper Fund](https://www.mitoaction.org/programs-support/mitoaction-programs/mhcf/) - The Matthew Harty Camper Fund helps kids with mito just be kids by sending them to summer camps.
- [Volunteer](https://www.mitoaction.org/join-the-cause/volunteer/) - 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
- [Become a MitoChampion](https://www.mitoaction.org/join-the-cause/volunteer/mito-champions/) - Back to Volunteer Become a MitoChampion Become a MitoChampion today to make a lasting impact on the mito community! 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
- [Create a Fundraiser](https://www.mitoaction.org/join-the-cause/volunteer/create-a-fundraiser/) - Back to Volunteer Create a Fundraiser Create a fundraiser today to help make a difference for mito patients and families! 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
- [Share Your Ideas](https://www.mitoaction.org/join-the-cause/volunteer/share-your-ideas/) - Back to 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. We Need Your Help to Meet our Mission! Have you been thinking about what you would do to
- [Raise Your Voice](https://www.mitoaction.org/join-the-cause/raise-your-voice/) - 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
- [Join the Cause](https://www.mitoaction.org/join-the-cause/) - 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
- [Muscle Biopsy Testing](https://www.mitoaction.org/mitochondrial-disease/diagnosis/muscle-biopsy-testing/) - 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. In order to diagnose whether or not you or your child has mitochondrial disease, sometimes health care providers
- [Mitochondrial Disease Diagnosis](https://www.mitoaction.org/mitochondrial-disease/diagnosis/) - 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. 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
- [Mito Cocktail](https://www.mitoaction.org/mitochondrial-disease/treatment/mito-cocktail/) - 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. "Mito Cocktail" is the name given to a variety of vitamins and supplements which are commonly used by adults and children who
- [Energy Management](https://www.mitoaction.org/mitochondrial-disease/energy-management/) - 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. Energy is part of life. We often don't pay much attention to the energy we use, until it is gone. One
- [Types of Mitochondrial Diseases](https://www.mitoaction.org/mitochondrial-disease/types-of-mitochondrial-diseases/) - Mitochondrial disease is an inherited chronic illness. There are many types of mitochondrial diseases and it is estimated that 1 in 4,000 people have Mito.
- [Mitochondrial Disease Frequently Asked Questions (FAQs)](https://www.mitoaction.org/mitochondrial-disease/faq/) - Back to Mitochondrial Disease Mitochondrial Disease Frequently Asked Questions (FAQs) 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.
- [Mitochondrial Disease Doctors](https://www.mitoaction.org/mitochondrial-disease/doctors/) - Back to Mitochondrial Disease 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. 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
- [Mitochondrial Care Network](https://www.mitoaction.org/mitochondrial-disease/doctors/mcn/) - Back to Mitochondrial Disease 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. The Mitochondrial Care Network (MCN) is a collaboration between mitochondrial physicians in the Mitochondrial Medicine Society (MMS) and US based patient advocacy
- [MyMito App](https://www.mitoaction.org/mymito/) - Back to 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. 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
- [MyMito App Quick-Start Guides & Tutorials](https://www.mitoaction.org/mymito/quickstart-home/) - Back to MyMito App 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. Welcome to MyMito App! These quick-start guides will help you get the most out of the MyMito App
- [MyMito App Signup - Mito Community](https://www.mitoaction.org/mymito/mymito-app-signup/)
- [MyMito App Signup - TK2D Community](https://www.mitoaction.org/mymito/mymito-app-signup-tk2d/)
- [MyMito App Signup - FAOD Community](https://www.mitoaction.org/mymito/mymito-app-signup-faod/)
- [Insurance Appeals for Compounded Medication Coverage](https://www.mitoaction.org/planning-and-preparation/insurance-appeals/) - 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. Produced Through a Joint Effort Between MitoAction and Patients and Physicians for Rx
- [MitoArtisan’s Playtime](https://www.mitoaction.org/programs-support/mitoaction-programs/mitoartisans-playtime/) - MitoAction Programs MitoArtisan’s Playtime MitoArtisan’s Playtime is a place for artists to create, connect and heal with other artists in our community. 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
- [Mito Cocktail](https://www.mitoaction.org/landers/mito-cocktail/) - A Mito Cocktail is a variety of vitamins and supplements which are commonly used by adults and children who have been diagnosed with mitochondrial disease.
- [Marcel's Way](https://www.mitoaction.org/programs-support/mitoaction-programs/marcelsway/) - 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. 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
- [Mitochondrial Disease Symptoms](https://www.mitoaction.org/landers/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 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
- [Landers](https://www.mitoaction.org/landers/)
- [Energy Walk - Hartford, CT](https://www.mitoaction.org/events/energywalk/energy-walk-hartford-ct/) - Hartford, CT, will be hosting its first Energy Walk in 2024. Stay tuned for more information on our newest Energy Walk addition!
- [Past Presentations](https://www.mitoaction.org/events/internationalmetabolicconference/past-presentations/) - Past Conference Presentations View presentations from past International Metabolic Conferences.
- [Genetic Counselors Volunteers](https://www.mitoaction.org/join-the-cause/volunteer/genetic-counselors-volunteers/)
- [Thanks for Contacting Us](https://www.mitoaction.org/about-us/contact-us/thanks-for-contact-us/) - 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/) - 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
- [2022 Conference Presentations](https://www.mitoaction.org/events/internationalmetabolicconference/2022-conference-presentations/)
- [2020 Conference Presentations](https://www.mitoaction.org/events/internationalmetabolicconference/2020-conference-presentations/)
- [2021 Conference Presentations](https://www.mitoaction.org/events/internationalmetabolicconference/2021-conference-presentations/)
- [Liney's Lovies](https://www.mitoaction.org/programs-support/patient-and-family-support/lineys-lovies/) - 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. 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
- [Things to Do While Visiting](https://www.mitoaction.org/events/internationalmetabolicconference/things-to-do-while-visiting/) - 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 FAOD-Friendly Restaurants in the Area Site Seeing in
- [Mito Navigator Toolkit](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/mito-navigator-toolkit/) - Medical Child Abuse 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. Navigating the Medical System Mitochondrial disease is a complex illness. Due in part to the fact that mitochondria can be found in every cell
- [Mito Navigator - Support](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/mito-navigator-toolkit/mito-navigator-support/) - Mito Navigator Toolkit 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 is Key! Living with a rare disease or caring for a person who suffers from
- [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/) - 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
- [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/) - 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
- [Mito Navigator — Communication](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/mito-navigator-toolkit/mito-navigator-communication/) - Mito Navigator Toolkit 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 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
- [Mito Navigator — Medical Records](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/mito-navigator-toolkit/medical-records/) - Mito Navigator Toolkit 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. The Importance of Medical Records Gathering and maintaining a complete set of medical records
- [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/) - 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
- [Medical Child Abuse](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/) - Planning & Preparation Medical Child Abuse Unfortunately, Mito patients and families often become the subject of Munchausen Syndrome, Munchausen Syndrome by Proxy (MSBP) and 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. To be sick
- [Developing a "Medical Home"](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/medical-home/) - “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
- [Responding to Allegations of Medical Child Abuse](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/responding-to-medical-child-abuse/) - 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
- [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/) - 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
- [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/) - 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
- [Transitioning Your Care Team](https://www.mitoaction.org/day-to-day-with-mito/care-coordination-management/transitioning-your-care-team/) - 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
- [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/) - 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
- [Mito Sick Protocol](https://www.mitoaction.org/day-to-day-with-mito/care-coordination-management/protocol/) - 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
- [Primary Care Physician Involvement and Interaction](https://www.mitoaction.org/day-to-day-with-mito/care-coordination-management/primary-care-physician-involvement-and-interaction/) - 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
- [Planning for Emergencies](https://www.mitoaction.org/day-to-day-with-mito/care-coordination-management/planning-for-emergencies/) - 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
- [Communicating Effectively with Medical Professionals](https://www.mitoaction.org/day-to-day-with-mito/care-coordination-management/advocating-effectively/) - 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
- [MitoAction Newsletters](https://www.mitoaction.org/newsletters/) - May 2023
- [Newsletter Confirmation](https://www.mitoaction.org/newsletters/newsletter-signup/newsletter-confirmation/) - 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 - taking control of your care and helping us learn more about the
- [Mito in the News](https://www.mitoaction.org/news/mito-in-the-news/)
- [MitoAction Events](https://www.mitoaction.org/events/) - Join us at MitoAction Events to help raise awareness for mitochondrial diseases and critical funds to help mito patients, families and caregivers.
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- [Energy 4 Education](https://www.mitoaction.org/education/energy-4-education/) - Energy 4 Education Resources 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 Planning & Early Intervention A good plan for early development and preschool will help your family as well as your child as
- [Sample IEP's & Letters](https://www.mitoaction.org/education/energy-4-education/sample-ieps-letters/) - These IEP and other templates may be helpful for parents, educators and physicians who need to advocate for children with mito.
- [Home Schooling](https://www.mitoaction.org/education/energy-4-education/school-education/home-schooling/) - 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. 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 and the Education System](https://www.mitoaction.org/education/energy-4-education/school-education/) - 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. Children with mito CAN attend school with supportive tools that can help a student maintain health and
- [Ages 0-3: Preschool and Early Intervention](https://www.mitoaction.org/education/energy-4-education/school-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.
- [Ages 3-5: Preschool](https://www.mitoaction.org/education/energy-4-education/school-education/ages-3-5-preschool/) - Preschool can be especially challenging for mito kids, as they sometimes lag behind in milestones like walking, sitting, talking, swallowing and self feeding.
- [Ages 11-14: Middle School](https://www.mitoaction.org/education/energy-4-education/school-education/ages-11-14-middle-school/) - Middle School is a big change for most students. It can be challenging as they deal with changing classrooms and having different teachers throughout the day.
- [Ages 14-18: High School and Beyond](https://www.mitoaction.org/education/energy-4-education/school-education/ages-14-18-high-school-and-beyond/) - High School brings new challenges for kids with mito and higher expectations from educators.
- [Ages 5-10: Elementary School](https://www.mitoaction.org/education/energy-4-education/school-education/ages-5-10-elementary-school/) - 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. First grade through fifth grade are more commonly known as the Elementary School Years. We are now
- [Art Therapy](https://www.mitoaction.org/education/energy-4-education/school-education/art-therapy/) - Energy 4 Education Art Therapy Art is a powerful way to help combat depression and stress in children dealing with mito. 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,
- [International Metabolic Conference Attendee Survey](https://www.mitoaction.org/international-metabolic-conference-attendee-survey/)
- [Light a Light](https://www.mitoaction.org/join-the-cause/raise-your-voice/awareness-week/light-a-light/) - 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
- [Glossary of Medical Terms](https://www.mitoaction.org/glossary/)
- [New Patient Kit](https://www.mitoaction.org/education/new-patient-kit/) - The MitoAction New Patient Kit is available online or by mail, and provides important information about mitochondrial diseases, diagnosis and treatment.
- [DEI Project Signup](https://www.mitoaction.org/dei-project-signup/)
- [Navigating COVID-19](https://www.mitoaction.org/coronavirus/) - 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.
- [Ways to Cope with the Emotional Impact of COVID-19](https://www.mitoaction.org/coronavirus/emotionalimpact/) - 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
- [Resources to Keep You Occupied During the COVID-19 Quarantine](https://www.mitoaction.org/coronavirus/resources/) - 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,
- [Understanding COVID-19](https://www.mitoaction.org/coronavirus/understanding-covid-19/) - 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) How Long Can the Virus that Causes COVID-19 Live on Surfaces? Massachusetts
- [Terms of Use](https://www.mitoaction.org/terms-of-use/) - 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
- [Search](https://www.mitoaction.org/search/) - Use the search field below to find content, resources, events and more by keyword(s).
- [Financial Assistance for the Mito Cocktail](https://www.mitoaction.org/mitochondrial-disease/treatment/mito-cocktail/financial-assistance-for-the-mito-cocktail/) - Diagnosis & Care 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. 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
- [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/) - Planning & Preparation 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. This content has been provided by Dino Scanio, pediatric orthotist. The face of
- [Disability Benefits](https://www.mitoaction.org/planning-and-preparation/disability-insurance/) - Planning & Preparation Disability Benefits State, Federal and private programs are available to help cover the costs of education, equipment and healthcare. 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
- [Estate Planning](https://www.mitoaction.org/planning-and-preparation/estate-planning/) - 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. This content has been provided by Annette Hines, JD. What is
- [Mobility Devices](https://www.mitoaction.org/planning-and-preparation/mobility-devices/) - Mobility devices are important for people with Mito or any neuromuscular diseases, and can help improve safety and quality of life.
- [Vehicle Modification](https://www.mitoaction.org/planning-and-preparation/vehicle-modification/) - Planning & Preparation Vehicle Modification Vehicle modifications like wheelchair ramps and lifts can make a van or other car more accessible. 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
- [Weekly Support Calls](https://www.mitoaction.org/programs-support/patient-and-family-support/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 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
- [Planning & Preparation](https://www.mitoaction.org/planning-and-preparation/) - 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
- [MitoAction Programs](https://www.mitoaction.org/programs-support/mitoaction-programs/) - MitoAction Programs create positive impacts in the lives of people living with mitochondrial disease as well as their loved ones. Learn more about our programs.
- [About MitoAction](https://www.mitoaction.org/about-us/) - MitoAction is a nonprofit organization dedicated to improving quality of life for children and adults with mitochondrial disease.
- [Meet Our Partners](https://www.mitoaction.org/about-us/meet-our-partners/) - 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
- [Newsletter Signup](https://www.mitoaction.org/newsletters/newsletter-signup/)
- [Contact Us](https://www.mitoaction.org/about-us/contact-us/) - Stay connected and contact MitoAction for the most current information relevant to the mitochondrial disease community.
- [Connect on Social](https://www.mitoaction.org/about-us/connect-with-us/) - Connect with MitoAction through one of our various social media platforms including Facebook, Instagram, LinkedIn and Twitter. 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
- [Education](https://www.mitoaction.org/education/) - Education Learn more about the current state of diagnosis, symptoms, treatment, clinical trials and day-to-day living with mitochondrial disease. 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 Wondering Wednesdays Genetics can seem complicated. We help
- [Wondering Wednesdays](https://www.mitoaction.org/education/monthly-expert-series/wondering-wednesdays/) - 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. Genetics can feel like they're written in a foreign language but you don't have to figure it out
- [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. Get a Diagnosis Diagnosing mitochondrial disease is difficult, and a diagnosis may still take years and involve
- [Programs & Support](https://www.mitoaction.org/programs-support/) - 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
- [Mito411](https://www.mitoaction.org/programs-support/patient-and-family-support/mito411/) - Patient & Family Support Mito411 Mito411 offers live, one to one support, education, advocacy, and a direct connection with someone who understands. 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
- [Positive Peach Packages](https://www.mitoaction.org/programs-support/patient-and-family-support/positive-peach-packages/) - Patient & Family Support 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. MitoAction is thrilled to sponsor Mito Warrior Jenevieve Woods, aka Peach, as she brings the mito community
- [Host a MitoSocial](https://www.mitoaction.org/programs-support/patient-and-family-support/mito-socials/host-a-mitosocial/) - Are you interested in hosting a MitoSocial? To get started, submit the form below:
- [Host a MitoPlaydate](https://www.mitoaction.org/programs-support/patient-and-family-support/mito-playdate/host-a-mitoplaydate/) - 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.
- [MitoPlaydates](https://www.mitoaction.org/programs-support/patient-and-family-support/mito-playdate/) - Patient & Family Support MitoPlaydates MitoPlaydates offer a wonderful opportunity for local children and families to connect in person, share experiences and to give and receive support. 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
- [MitoAction Memories](https://www.mitoaction.org/programs-support/patient-and-family-support/memories/) - Patient & Family Support 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. 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
- [MitoSocials](https://www.mitoaction.org/programs-support/patient-and-family-support/mito-socials/) - Patient & Family Support MitoSocials Connect with other mito families in your local community to meet, share stories, and give and get support from others with similar experiences. 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,
- [Patient Education Forums](https://www.mitoaction.org/education/pefs/) - EDUCATION Patient Education Forums Learn about mito, hear the most updated information directly from clinicians, and connect with other families. 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
- [Monthly Expert Series](https://www.mitoaction.org/education/monthly-expert-series/) - 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. More than 125 presentations have been recorded and posted online, making these presentations available to you at your convenience. The Mito Monthly Expert Series are generally held
- [Energy In Action Podcast](https://www.mitoaction.org/education/energy-in-action/) - 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. Our podcast series—Energy In Action—consists of conversations with patients, families, researchers, and thought leaders in the mitochondrial disease communities. These
- [New Patient Kit for Mito](https://www.mitoaction.org/education/new-patient-kit/new-patient-kit-for-mito/) - View our New Patient Kit online, download it as a PDF, or request a paper copy of the using the form below.
- [New Patient Kit for FAOD](https://www.mitoaction.org/education/new-patient-kit/new-patient-kit-for-faod/) - View our FAOD New Patient Kit online, download it as a PDF, or you can also request a paper copy of the using the form below.
- [Clinical Trial Terms & Phrases](https://www.mitoaction.org/clinicaltrials/clinical-trial-terms/) - These clinical trial terms are words and phrases commonly used in clinical trials, and which you are likely to come across as you research available trials.
- [Social Media & Online Interactions](https://www.mitoaction.org/planning-and-preparation/medical-child-abuse/social-media/) - 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
- [FAOD Programs and Support](https://www.mitoaction.org/fatty-acid-oxidation-disorders/faod-programs-and-support/) - FAOD Programs & Support Our hope is to provide comprehensive information to the FAOD community through resources and support. Find resources regarding diagnosis, symptoms, treatment options, day-to-day support, 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
- [Fatty Acid Oxidation Disorders](https://www.mitoaction.org/fatty-acid-oxidation-disorders/) - Fatty Acid Oxidation Disorders (FAODs) are a group of rare, metabolic disorders in which the body cannot break down fat into usable energy Fatty Acid Oxidation Disorders 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,
- [FAOD Treatment](https://www.mitoaction.org/fatty-acid-oxidation-disorders/faod-treatment/) - 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
- [The Spoon Theory](https://www.mitoaction.org/day-to-day-with-mito/managing-your-energy/the-spoon-theory/) - 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
- [Children with Mito](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/children-with-mito/) - “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,
- [Sexuality and Mito](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/adults-with-mito/sexuality-and-mito/) - 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,
- [Marriage and Mito](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/adults-with-mito/marriage-and-mito/) - "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,
- [Managing Your Family](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/adults-with-mito/managing-your-family/) - 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
- [Advocating for Yourself](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/adults-with-mito/advocating-for-yourself/) - "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
- [Keeping Your Cool:  Cooling Vest Types](https://www.mitoaction.org/day-to-day-with-mito/heat-intolerance/keeping-your-cool-cooling-vest-types/) - 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 These vests feel like terry cloth but have tiny pockets of highly absorbable beads that can take in water and
- [FAOD Experts Series](https://www.mitoaction.org/fatty-acid-oxidation-disorders/faod-experts-series/) - Fatty Acid Oxidation Disorders (FAODs) are a group of rare, metabolic disorders in which the body cannot break down fat into usable energy FAOD Expert Series
- [FAOD Diagnosis](https://www.mitoaction.org/fatty-acid-oxidation-disorders/faod-diagnosis/) - 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
- [FAOD Symptoms](https://www.mitoaction.org/fatty-acid-oxidation-disorders/faod-symptoms/) - 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
- [Matthew Harty Camper Fund Events](https://www.mitoaction.org/events/matthew-harty-camper-fund-events/) - 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. Matthew Harty Golf Tournament The Matthew Harty Golf Tournament plays an essential role in the financial
- [Shop for MitoAction](https://www.mitoaction.org/join-the-cause/giving/shop-for-mitoaction-2/) - 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/) - 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
- [Enjoying Halloween with Your Family](https://www.mitoaction.org/day-to-day-with-mito/holiday-tips/enjoying-halloween-with-your-family/) - 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
- [Living with Mitochondrial Disease](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/) - 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 Children with Mito Finding
- [Teens and Young Adults with Mito](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/teens-with-mito/) - 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
- [Adults with Mito](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/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 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
- [College Tips](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/teens-with-mito/college-tips/) - 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
- [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/) - 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?"
- [Dealing with the Fatigue of Mito](https://www.mitoaction.org/day-to-day-with-mito/managing-your-energy/dealing-with-the-fatigue-of-mito/) - 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
- [Conserving Energy](https://www.mitoaction.org/day-to-day-with-mito/managing-your-energy/conserving-energy/) - 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
- [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/) - 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
- [Transition to Adulthood](https://www.mitoaction.org/day-to-day-with-mito/life-stages-with-mito/teens-with-mito/transition-to-adulthood/)
- [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/) - 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
- [Advocating for Yourself and Your Child](https://www.mitoaction.org/day-to-day-with-mito/advocating-for-yourself-and-your-child/) - "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
- [Mito Warrior Wednesday](https://www.mitoaction.org/day-to-day-with-mito/mito-warrior-wednesday/)
- [Shop](https://www.mitoaction.org/shop/)
- [Heat Intolerance](https://www.mitoaction.org/day-to-day-with-mito/heat-intolerance/) - 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

## Bios

- [Michael Green](https://www.mitoaction.org/bios/michael-green/) - 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
- [Kira Mann](https://www.mitoaction.org/bios/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
- [Sydney Watkins](https://www.mitoaction.org/bios/emily-grandahl/) - 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
- [Stephanie Harry](https://www.mitoaction.org/bios/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.
- [Pranav Ponnaluri, MS, MBA](https://www.mitoaction.org/bios/pranav-ponnaluri-ms-mba/) - 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
- [Robert Harper, IVDS, Bioscience Founder and CEO](https://www.mitoaction.org/bios/robert-harper-ivds-bioscience-founder-and-ceo/) - Robert Harper is an experienced redox chemist and diagnostics entrepreneur with more than 30 years of leadership in translational research and development.
- [Sarah Grünert, MD](https://www.mitoaction.org/bios/sarah-grunert-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
- [Brian Weber, DPT, CFMT, FFMT, FAFS, FAAOMPT](https://www.mitoaction.org/bios/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
- [Chen Zhang](https://www.mitoaction.org/bios/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
- [Lauren O'Grady, MS, CGC](https://www.mitoaction.org/bios/lauren-ogrady-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.
- [Pamela Tucker, DPT, PT](https://www.mitoaction.org/bios/pamela-tucker/) - 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
- [Melanie Gillingham, PhD, RD, LD](https://www.mitoaction.org/bios/dr-melanie-gillingham/) - 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)
- [Jessica Gold, MD, PhD](https://www.mitoaction.org/bios/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
- [Jerry Vockley, MD, PhD, FACMG](https://www.mitoaction.org/bios/dr-jerry-vockley/) - 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
- [Georgianne Arnold, MD, Phd](https://www.mitoaction.org/bios/dr-georgianne-arnold/) - 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
- [Dwight Koeberl, MD, PhD](https://www.mitoaction.org/bios/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
- [Daniela Karall, MD, IBCLC](https://www.mitoaction.org/bios/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.
- [Amanda Pritchard, MD](https://www.mitoaction.org/bios/amanda-pritchard/) - 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
- [Bryan R. Cohen, BSN, RN](https://www.mitoaction.org/bios/bryan-r-cohen-bsn-rn/) - 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
- [Jonathan Mordis, CEO](https://www.mitoaction.org/bios/jonathan-mordis-ceo/) - 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
- [Houry Lepedjian](https://www.mitoaction.org/bios/houry-lepedjian/) - 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
- [Rebecca Ganetzky, MD](https://www.mitoaction.org/bios/dr-rebecca-ganetzky/) - 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
- [Cristy Balcells, RN, MSN](https://www.mitoaction.org/bios/cristy-balcells/) - 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/) - Anil Darbari is the Director of the Comprehensive Gastrointestinal (GI) Motility Center and a member of the Division of Pediatric Gastroenterology, Hepatology, and Nutrition at Children’s National Hospital.
- [Donna DiVito, MS, RDN, CPHQ, CLSSGB](https://www.mitoaction.org/bios/donna-divito-ms-rdn-cphq-clssgb/) - 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/) - 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,
- [Brad Buchanan](https://www.mitoaction.org/bios/brad-buchanan/) - 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
- [Sarah Chang, PhD](https://www.mitoaction.org/bios/sarah-chang-phd/) - Sarah Chang, PhD, is Medical Strategy Lead at UCB, where she works on the thymidine kinase 2 deficiency (TK2d) program.
- [Elad Jacoby, MD](https://www.mitoaction.org/bios/elad-jacoby-md/) - 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.
- [Noa Sher, PhD](https://www.mitoaction.org/bios/noa-sher-ph-d/) - Dr. Noa Sher is CSO at Minovia Therapeutics. A molecular and cellular biologist who specializes in developing cell therapies for rare diseases.
- [William C. Copeland, PhD](https://www.mitoaction.org/bios/william-c-copeland/) - 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
- [James Peterson, MS, LCGC](https://www.mitoaction.org/bios/james-jamie-peterson/) - 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
- [Karen Richtman](https://www.mitoaction.org/bios/karen-richtman/) - 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
- [Naomi Litchfield](https://www.mitoaction.org/bios/naomi-litchfield/) - 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.
- [Elizabeth Ames, MD, PhD](https://www.mitoaction.org/bios/elizabeth-ames-md-phd/) - 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
- [Glenn Noffsinger](https://www.mitoaction.org/bios/glenn-noffsinger/) - 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,
- [Joshua Baker, DO, FAAP, FACMG, LCH](https://www.mitoaction.org/bios/joshua-baker-do-faap-facmg-lch/) - 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
- [Kristen Lee, MD, U-M](https://www.mitoaction.org/bios/kristen-lee-md-u-m/) - 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
- [Martha Barnes, RD, U-M](https://www.mitoaction.org/bios/martha-barnes-rd-u-m/) - 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
- [Vanessa Rangel Miller, MS, MBA, CGC](https://www.mitoaction.org/bios/vanessa-rangel-miller-ms-mba-cgc/) - 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,
- [Yi Tak (Daisy) Tsang, PhD, LP](https://www.mitoaction.org/bios/daisy-tsang-phd-lp/) - 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
- [Joey Hernandez](https://www.mitoaction.org/bios/joey-hernandez/) - 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
- [Rossana Sánchez Russo, MD](https://www.mitoaction.org/bios/rossana-sanchez-russo-md/) - 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,
- [Oscar Henry Mayer, MD](https://www.mitoaction.org/bios/oscar-henry-mayer-md/) - 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
- [Daniel Nale, MD](https://www.mitoaction.org/bios/daniel-nale-md/) - 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
- [Amy Goldstein, MD](https://www.mitoaction.org/bios/dr-amy-goldstein/) - 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
- [Ted Toufas, BS, PharmD, RPh](https://www.mitoaction.org/bios/dr-ted-toufas/) - 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
- [Jirair Bedoyan, MD, PhD, FACMG](https://www.mitoaction.org/bios/jirair-bedoyan-mdphd-facmg/) - Jirair K. Bedoyan is an Associate Professor of Pediatrics at the University of Pittsburgh School of Medicine in the Division of Genetic and Genomic Medicine.
- [Erin Neil Knierbein, DO](https://www.mitoaction.org/bios/erin-neil-knierbein-do/) - 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.
- [Keith McIntire](https://www.mitoaction.org/bios/keith-mcintire/) - 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
- [Jessica Priestley, MD PhD](https://www.mitoaction.org/bios/jessica-priestley-md-phd/) - 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
- [Shannon Babcock, PhD](https://www.mitoaction.org/bios/shannon-babcock-phd/) - 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
- [Fernando Scaglia, MD](https://www.mitoaction.org/bios/fernando-scaglia/) - 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
- [Alessandro Prigione, MD, PhD](https://www.mitoaction.org/bios/alessandro-prigione/) - 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
- [Lovelynn Ivey](https://www.mitoaction.org/bios/lovelynn-ivey/) - 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
- [Devin Shuman, MS, LCGC](https://www.mitoaction.org/bios/devin-shuman-ms-lcgc/) - 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
- [Kathryn Chatfield, MD](https://www.mitoaction.org/bios/dr-katheryn-chatfield/) - 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
- [Sommer Gaughan, MPH, RDN](https://www.mitoaction.org/bios/sommer-gaughan/) - 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
- [Austin Larson, MD](https://www.mitoaction.org/bios/dr-austin-larson/) - 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
- [Shana McCormack, MD, MTR](https://www.mitoaction.org/bios/dr-shana-mccormack-md-mtr/) - 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
- [Julie Gortze, RN](https://www.mitoaction.org/bios/julie-gortze-rn/)
- [Gene Kelly](https://www.mitoaction.org/bios/gene-kelly-executive-director-medical-affairs-at-stealth-biotherapeuticsgene-kelly/) - 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
- [Tasia Techisky, MBA](https://www.mitoaction.org/bios/tasia-rechisky/) - 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
- [Michelle Cincotti, RN](https://www.mitoaction.org/bios/michelle-cincotti/) - 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
- [Aaina Koacchar, MD, MBBS](https://www.mitoaction.org/bios/dr-aaina-koacchar/) - 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
- [David Holtzman, MD](https://www.mitoaction.org/bios/dr-david-holtzman/) - 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/)
- [Susan Orloff, OTR/L](https://www.mitoaction.org/bios/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”. Susan is the author of Learning Re-Enabled
- [Christoph Westphal, MD, PhD](https://www.mitoaction.org/bios/dr-westphal/)
- [Valerie Powers Smith, Esq](https://www.mitoaction.org/bios/valerie-a-powers-smith-esq/) - 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 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.
- [Nancy Moore](https://www.mitoaction.org/bios/nancy-moore/) - 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/) - 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".
- [Pat O'Malley, MD](https://www.mitoaction.org/bios/dr-pat-omalley/) - 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
- [John Raycroft](https://www.mitoaction.org/bios/john-jack-raycroft/) - 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
- [Mark De Fries](https://www.mitoaction.org/bios/mark-de-fries/) - 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/) - 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
- [Carole Slipowitz, PhD](https://www.mitoaction.org/bios/carole-slipowitz-phd/)
- [Alex Flores, MD](https://www.mitoaction.org/bios/dr-alex-flores/) - 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
- [Lee Rachel Jurman](https://www.mitoaction.org/bios/lee-rachel-jurman/) - Lee Rachel Jurman is a private disability advocate and case manager with Personal Disability Consulting, Inc. 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
- [Steve Sommer, MD, PhD](https://www.mitoaction.org/bios/dr-steve-sommer/)
- [Abby Usen, MS, RD](https://www.mitoaction.org/bios/abby-usen/) - 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
- [Virginia Tawa, PharmD](https://www.mitoaction.org/bios/dr-virginia-tawa-pharmd/)
- [Maggie Orr, RN, MSN, EdM](https://www.mitoaction.org/bios/maggie-orr-rn/) - Maggie Orr is a trained as a Family Nurse Practitioner at Yale School of Nursing and did primarycare before staying home to care for her daughter, Mamie Rose, who died ofmitochondrial disease (Complex I defect) in 2003. She has undergraduate degrees inSpanish and Early Childhood Education from Arizona State University, and a master's ineducation from
- [Marcus Favero, MD](https://www.mitoaction.org/bios/dr-marcus-favero/)
- [Nancy Slate, MS](https://www.mitoaction.org/bios/nancy-slate-ms/) - 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
- [Al Muto, PharmD](https://www.mitoaction.org/bios/al-muto/)
- [Margaret O'Rilley, RN](https://www.mitoaction.org/bios/margaret-oriley-rn/) - 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
- [Shellie Léger, MSW, MBA](https://www.mitoaction.org/bios/shellie-leger-msw-mba/) - 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
- [Mona Inocentes](https://www.mitoaction.org/bios/mona-inocentes/) - 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
- [Deb Pfister, MS, RDN, CNSC](https://www.mitoaction.org/bios/deb-pfister/)
- [Susan Pacheco, MD](https://www.mitoaction.org/bios/dr-susan-pacheco/)
- [John Moon](https://www.mitoaction.org/bios/john-moon/)
- [Matthew Weiss, MD, FCCP](https://www.mitoaction.org/bios/dr-matthew-d-weiss-md-fccp/) - 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
- [Marnie Taimuty-Loomis, MA, LBS](https://www.mitoaction.org/bios/mannie-taimuty-loomis-ma-lbs/) - 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
- [Kimberly Serra, PT, DPT, MTC, CSCS](https://www.mitoaction.org/bios/kimberly-serra-pt-dpt-mtc-cscs/) - 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
- [Greg Enns, MD](https://www.mitoaction.org/bios/dr-greg-enns/)
- [Kirsten Casale](https://www.mitoaction.org/bios/kirsten-casale/)
- [Richard Haas, MD](https://www.mitoaction.org/bios/dr-richard-haas/)
- [Peter Kullar, MD, ENT](https://www.mitoaction.org/bios/dr-peter-kullar/) - 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/) - 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) and has also
- [Ben Bronstein, MD](https://www.mitoaction.org/bios/ben-bronstein/) - 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
- [Kathy Rivers, MD](https://www.mitoaction.org/bios/kathy-rivers-md/)
- [Brenda Senger, RN, MA](https://www.mitoaction.org/bios/brenda-senger-rn-ma/) - 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
- [Christine Knox](https://www.mitoaction.org/bios/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
- [Melissa Walker, MD, PhD](https://www.mitoaction.org/bios/melissa-a-walker-md-phd/) - 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
- [Jolan Walter, MD, PhD](https://www.mitoaction.org/bios/jolan-e-walter-md-phd/) - 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
- [Katherine Sims, MD](https://www.mitoaction.org/bios/dr-katherine-sims/) - 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
- [Matthew Kline, MD, MS, FACS](https://www.mitoaction.org/bios/dr-matthew-kline/)
- [Travis Wilson](https://www.mitoaction.org/bios/travis-wilson/) - 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
- [MaryBeth Hollinger, RN, MSN](https://www.mitoaction.org/bios/marybeth-hollinger-rn-msn/)
- [Peter Stacpoole, MD, PhD](https://www.mitoaction.org/bios/dr-peter-stacpoole/) - 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
- [Kendall Wallace, PhD, DABT, ATS](https://www.mitoaction.org/bios/kendall-b-wallace-ph-d-dabt-ats/) - 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
- [Tai Venuti, MPH](https://www.mitoaction.org/bios/tai-venuti/) - 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
- [Bruce Cohen, MD, FAAN](https://www.mitoaction.org/bios/dr-bruce-h-cohen/) - 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
- [Martha Rinker, JD](https://www.mitoaction.org/bios/martha-rinker-jd/) - 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
- [Paul Melmeyer, MPP](https://www.mitoaction.org/bios/paul-melmeyer/) - 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
- [Tim Boyd, MPH](https://www.mitoaction.org/bios/tim-boyd/) - 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
- [Kristen Roberts, MD, RD](https://www.mitoaction.org/bios/kristen-roberts/) - 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
- [Kris Engelstad, MS, CGC](https://www.mitoaction.org/bios/kris-engelstad-ms-cgc/) - 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
- [Greg Macpherson](https://www.mitoaction.org/bios/greg-macpherson/) - 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,
- [Cheryl Clow, RN](https://www.mitoaction.org/bios/cheryl-m-clow-rn/) - 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
- [Kristi Wees, MSC, CHEM](https://www.mitoaction.org/bios/kristi-wees/) - 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/) - 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
- [Richard Frye, MD, PhD](https://www.mitoaction.org/bios/dr-richard-frye/) - 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
- [Amanda Balog, CGC](https://www.mitoaction.org/bios/amanda-balog/) - 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/) - 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
- [Michio Hirano, MD](https://www.mitoaction.org/bios/dr-michio-hirano/) - 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)
- [Ann Weaver](https://www.mitoaction.org/bios/ann-weaver/) - 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.
- [Sumit Parikh, MD](https://www.mitoaction.org/bios/dr-sumit-parikh/) - 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)
- [Reenie McCarthy](https://www.mitoaction.org/bios/reenie-mccarthy/) - 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/) - 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
- [Hope Schreiber, PsyD, ABPP/CN](https://www.mitoaction.org/bios/hope-schreiber/) - 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
- [Parag Shah, MD, MPH](https://www.mitoaction.org/bios/parag-shah-md-mph/) - 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
- [Annette Hines, Esq](https://www.mitoaction.org/bios/annette-m-hines/) - 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
- [Shannon von Felden, MPP, RSDSA](https://www.mitoaction.org/bios/shannon-von-felden/) - 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
- [Dave Williams](https://www.mitoaction.org/bios/dave-williams/)
- [Margaret Klehm, RN, MPH, MSN, FNP](https://www.mitoaction.org/bios/margaret-klehm/) - 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/)
- [Becky Sansbury, M.Div](https://www.mitoaction.org/bios/becky-sansbury/) - 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
- [Alejandro Dorenbaum, MD](https://www.mitoaction.org/bios/alejandro-alex-dorenbaum-md/) - 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
- [Mark Kay Koenig, MD](https://www.mitoaction.org/bios/dr-mary-kay-koenig/) - 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
- [Irina Anslem, MD](https://www.mitoaction.org/bios/irina-a-anselm-md/) - 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
- [Kyle Bryant](https://www.mitoaction.org/bios/kyle-bryant/) - 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
- [Rebecca Ganetzky, MD](https://www.mitoaction.org/bios/rebecca-ganetzky-md/) - 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
- [Adam Johnson, MEd, Eds](https://www.mitoaction.org/bios/adam-johnson/) - 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
- [Madhu Davies, MD](https://www.mitoaction.org/bios/madhu-davies/) - 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.
- [Eliza Kruger, MBA](https://www.mitoaction.org/bios/eliza-kruger/) - 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
- [Douglas Wallace, PhD](https://www.mitoaction.org/bios/douglas-c-wallace/) - 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
- [Francesco Bibbiani, MD](https://www.mitoaction.org/bios/francesco-bibbiani/) - 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
- [MitoAction](https://www.mitoaction.org/bios/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
- [CureMito Foundation](https://www.mitoaction.org/bios/cure-mito-foundation/) - 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
- [AllStripes](https://www.mitoaction.org/bios/allstripes/) - 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
- [Caroline Sanders](https://www.mitoaction.org/bios/caroline-sanders/) - 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
- [George Lippman](https://www.mitoaction.org/bios/george-lippman/) - 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/) - 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
- [Beth Alison Maloney, Esq](https://www.mitoaction.org/bios/beth-alison-maloney/) - 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
- [Matthew Klein, MD, MS, FACS](https://www.mitoaction.org/bios/dr-matt-klein/) - 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
- [Various Speakers](https://www.mitoaction.org/bios/various-people/)
- [Charles Mitter, PhD](https://www.mitoaction.org/bios/charles-mitter/) - 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/) - 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
- [Sylvia Mills](https://www.mitoaction.org/bios/sylvia-mills/) - 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
- [Kathryn Jordan Kemere, MD](https://www.mitoaction.org/bios/jordan-kemere/) - 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
- [Dave Keane](https://www.mitoaction.org/bios/dave-keane/) - 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,
- [Marcelle Longlade](https://www.mitoaction.org/bios/marcelle-longlade/) - 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
- [Emil Kakkis, MD, PhD](https://www.mitoaction.org/bios/dr-emil-d-kakkis/) - 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
- [Jessica Riviere, MHS](https://www.mitoaction.org/bios/jessica-riviere/) - 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
- [Meena Sethuraman](https://www.mitoaction.org/bios/meena-sethuraman/) - 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
- [Christy Yang, MS](https://www.mitoaction.org/bios/christy-yang-m-s/) - 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
- [Beth Folcher](https://www.mitoaction.org/bios/beth-folcher/) - 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.
- [Richard Boles, MD](https://www.mitoaction.org/bios/richard-g-boles-m-d/) - 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.
- [Gena Padgett, LP](https://www.mitoaction.org/bios/gena-padgett/) - 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
- [Tobin Chettiath, PharmD, MBA](https://www.mitoaction.org/bios/tobin-chettiath/) - 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
- [Kristin Voorhees, MA](https://www.mitoaction.org/bios/kristin-voorhees/) - 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
- [Laura Pisani-Betancourt, MD](https://www.mitoaction.org/bios/laura-pisani-betancourt/) - Laura Pisani-Betancourt, MD is the Medical Director of Global Clinical Development at Ultragenyx Pharmaceutical.
- [Mark Tarnopolsky, BPE, MD, PhD](https://www.mitoaction.org/bios/dr-mark-tarnopolsky/) - 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
- [Laura Pisani, MD](https://www.mitoaction.org/bios/dr-laura-pisani/) - 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
- [Casey Burns, RD, CSP, CNSC](https://www.mitoaction.org/bios/casey-burns/) - 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.
- [Emily Holl](https://www.mitoaction.org/bios/emily-holl/) - 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,
- [Pamela Lane, MSW, LCSW](https://www.mitoaction.org/bios/pamela-lane/) - 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
- [Marie Norris, MS, RDN, CD, CNSC, PhD](https://www.mitoaction.org/bios/marie-norris/) - 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
- [Eric Goetzman, PhD](https://www.mitoaction.org/bios/dr-eric-goetzman/) - 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
- [Michael Decker](https://www.mitoaction.org/bios/dr-michael-decker/) - 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
- [Peter McGuire, MS, MMBCh](https://www.mitoaction.org/bios/dr-peter-mcguire/) - 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. 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
- [Marguerite Duane, MD, MHA, FAAFP](https://www.mitoaction.org/bios/dr-marguerite-duane/) - 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
- [Jan Smeitink, MD, PhD](https://www.mitoaction.org/bios/dr-jan-smeitink/) - 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
- [Mark Korson, MD](https://www.mitoaction.org/bios/dr-mark-korson/) - 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
- [Allen Williams](https://www.mitoaction.org/bios/allen-williams/) - 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
- [Natashia Cheatham](https://www.mitoaction.org/bios/natashia-cheatham/) - 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
- [Andrew Nierenberg, MD](https://www.mitoaction.org/bios/andrew-nierenberg/) - 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
- [Jenevieve Woods](https://www.mitoaction.org/bios/jenevieve-woods/) - Contact Jenevieve at jenevieve@mitoaction.org.
- [Soozi Scheller, MS, MTS, FCP](https://www.mitoaction.org/bios/soozi-scheller/) - 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
- [John Kelly](https://www.mitoaction.org/bios/john-kelly/) - 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
- [Paul Harty](https://www.mitoaction.org/bios/paul-harty/) - 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
- [Jessica Fein](https://www.mitoaction.org/bios/jessica-fein/) - 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
- [Saad Dinno, RPh, FIACP, FACA](https://www.mitoaction.org/bios/saad-dinno/) - 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
- [Jeannie Freeman](https://www.mitoaction.org/bios/jeannie-freeman/) - 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
- [Phillip Borden, MBA](https://www.mitoaction.org/bios/philip-borden/) - 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
- [Gordon Russell](https://www.mitoaction.org/bios/gordon-russell/) - 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
- [Tom Keery](https://www.mitoaction.org/bios/tom-keery/) - 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
- [Ann Lanoue, RN](https://www.mitoaction.org/bios/ann-lanoue/) - 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
- [Amel Karaa, MD](https://www.mitoaction.org/bios/dr-amel-karaa/) - 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
- [Frances Kendall, MD](https://www.mitoaction.org/bios/dr-frances-kendall/) - 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
- [Michael Kendall](https://www.mitoaction.org/bios/michael-kendall/) - 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
- [Darius Adams, MD](https://www.mitoaction.org/bios/dr-darius-adams/) - 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

## Landing Pages

- [Mitochondrial Disease Symptoms](https://www.mitoaction.org/landing-page/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 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

## Mito Doctors

- [Richard Boles](https://www.mitoaction.org/mito-doctors/richard-boles/)
- [Austin Larson](https://www.mitoaction.org/mito-doctors/austin-larson/)
- [Kumarie Latchman](https://www.mitoaction.org/mito-doctors/kumarie-latchman/)
- [Fran Kendall](https://www.mitoaction.org/mito-doctors/fran-kendall/)
- [Joshua Baker](https://www.mitoaction.org/mito-doctors/joshua-baker/)
- [Dmitriy Niyazov](https://www.mitoaction.org/mito-doctors/dmitriy-niyazov/)
- [Amel Karaa](https://www.mitoaction.org/mito-doctors/amel-karaa/)
- [Marni Faulk](https://www.mitoaction.org/mito-doctors/marni-faulk/)
- [Amy Goldstein](https://www.mitoaction.org/mito-doctors/amy-goldstein/)
- [Bruce Cohen](https://www.mitoaction.org/mito-doctors/bruce-cohen/)
- [Fernando Scaglia](https://www.mitoaction.org/mito-doctors/fernando-scaglia/)
- [Irina Anselm](https://www.mitoaction.org/mito-doctors/irina-anselm/)
- [Andrea Gropman](https://www.mitoaction.org/mito-doctors/andrea-gropman/)
- [Jaya Ganesh](https://www.mitoaction.org/mito-doctors/jaya-ganesh/)
- [Gregory Enns](https://www.mitoaction.org/mito-doctors/gregory-enns/)
- [Carol Greene](https://www.mitoaction.org/mito-doctors/carol-greene/)
- [Johan Van Hove](https://www.mitoaction.org/mito-doctors/johan-van-hove/)
- [Kevin Houston](https://www.mitoaction.org/mito-doctors/kevin-houston/)
- [Margherita Milone](https://www.mitoaction.org/mito-doctors/margherita-milone/)
- [Amit Sachdev](https://www.mitoaction.org/mito-doctors/amit-sachdev/)
- [Bryan Hainline](https://www.mitoaction.org/mito-doctors/bryan-hainline/)
- [Richard Frye](https://www.mitoaction.org/mito-doctors/richard-frye/)
- [Renata Gallagher](https://www.mitoaction.org/mito-doctors/renata-gallagher/)
- [Shawn McCandless](https://www.mitoaction.org/mito-doctors/shawn-mccandless/)
- [Melissa Walker](https://www.mitoaction.org/mito-doctors/melissa-walker/)
- [Ralitza Gavrilova](https://www.mitoaction.org/mito-doctors/ralitza-gavrilova/)
- [Michio Hirano](https://www.mitoaction.org/mito-doctors/michio-hirano/)
- [Mary Koenig](https://www.mitoaction.org/mito-doctors/mary-koenig/)
- [Uta Lichter-Konecki](https://www.mitoaction.org/mito-doctors/uta-lichter-konecki/)
- [Sumit Parikh](https://www.mitoaction.org/mito-doctors/sumit-parikh/)
- [Russell Saneto](https://www.mitoaction.org/mito-doctors/russell-saneto/)
- [Richard Haas](https://www.mitoaction.org/mito-doctors/richard-haas/)

## Resources

- [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/) - 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. Mark 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
- [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/) - In this episode of Energy in Action, Marcy speaks with leading mitochondrial expert Dr. Mark 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,
- [Expert Series: Understanding the potential of a "CPK Meter”](https://www.mitoaction.org/resources/expert-series-understanding-the-potential-of-a-cpk-meter/) - 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.
- [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/) - 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,
- [Alex the Great and LCHAD](https://www.mitoaction.org/resources/alex-the-great-and-lchad/) - ENERGY IN ACTION - EPISODE 066Alex 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
- [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/) - 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
- [MitoArtisan's Playtime - Course 6: MitoHeart Project](https://www.mitoaction.org/resources/mitoartisans-playtime-course-6-mitohearts-project/) - Join us on 9/14 for our next MitoArtisian Playtime. We will lead you through the steps of making a heart, and the class will be recorded for you to use in the future!
- [MitoArtisan's Playtime - Course 7: Fall Leaves Falling](https://www.mitoaction.org/resources/mitoartisans-playtime-course-7-fall-leaves-falling/) - Fall brings a special kind of beauty that we all seek to enjoy! This course will seek to capture the fall beauty in a simple way, using a few colored pencils.
- [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/) - 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.
- [Episode 2: Wondering Wednesdays: Ask the Genetic Counselor (February 22, 2023)](https://www.mitoaction.org/resources/wondering-wednesdays-ask-the-genetic-counselor-copy/) - 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
- [Episode 1: Wondering Wednesdays: Ask the Genetic Counselor (January 25, 2023)](https://www.mitoaction.org/resources/wondering-wednesdays-ask-the-genetic-counselor/) - 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
- [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/) - PFDD panelists Gordon, Jackie, and Cheryl share stories of MELAS, advocacy, caregiving, grief, and hope while speaking directly to the FDA.
- [Expert Series: Neuropathy and Disorders of Mitochondrial Dysfunction](https://www.mitoaction.org/resources/expert-series-neuropathy-and-disorders-of-mitochondrial-dysfunction/)
- [MitoArtisan's Playtime - Course 9: Writing as Healing Workshop](https://www.mitoaction.org/resources/mitoartisans-playtime-course-9-writing-as-healing-workshop/) - 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
- [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/) - View Slides Optimized Nutrition Article Article Supplementary Material
- [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/) - In this episode, Marcy welcomes back Dr. Mark for a practical and deeply informative conversation about sleep, fatigue, and mitochondrial health.
- [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/) - In this Expert Series with Dr. Ganetzky, we will talk about what lactic acid is supposed to do and how that gets dysregulated in mitochondrial disease.
- [Expert Series: Direct to Consumer Genetic Testing 101](https://www.mitoaction.org/resources/expert-series-direct-to-consumer-genetic-testing-101/)
- [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/) - 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.
- [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/) - Stephanie and Tasia reflect on the unique bond formed through rare disease, the complexity of grieving someone you never met, and the impact Katie made.
- [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/) - Dr. Sanchez shares the path that led her from growing up in Colombia to becoming a physician deeply committed to advancing care for some of the most challenging disorders.
- [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/) - In this episode, Matthew shares his diagnostic journey, from missed milestones and years of testing to finally receiving a diagnosis of Complex I and III mito.
- [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/) - Dr. Darbari will provide an overview of gastrointestinal motility, explore complexities patients face in diagnosis, and discuss current treatment strategies.
- [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/) - In partnership with Little Hercules Foundation, this Expert Series explores insurance basics, claims, coding, prior authorizations, and understanding your EOB.
- [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/) - In this episode, host Marcy speaks with Ryan about her path from a high school genetics class to working in the Mitochondrial Medicine Frontier Program at CHOP.
- [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/) - 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
- [MitoArtisan's Playtime - Course 8: Writing as Healing Workshop](https://www.mitoaction.org/resources/mitoartisans-playtime-course-8-writing-as-healing-workshop/) - This workshop offers a safe space to express our feelings through words, enabling us to process trauma, accept difficult news, and rebuild resilience.
- [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/) - 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.
- [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/) - Marcy sits down with industry expert Marina Kolocha to unpack what PFDD meetings are, why they matter, and how they help drive real progress in mito research.
- [Expert Series: Understanding TK2d and the KYGEVVI Approval](https://www.mitoaction.org/resources/expert-series-understanding-tk2d-and-the-kygevvi-approval/) - Join us for a webinar exploring KYGEVVI™, the first FDA-approved treatment for thymidine kinase 2 deficiency (TK2d) in adults and pediatric patients.
- [2026 Mito Town Meeting](https://www.mitoaction.org/resources/2026-mito-town-meeting/) - 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!
- [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/) - Stephanie and Christine explore how creative expression can support mental health, confidence, and foster resilience through all stages of the mito journey.
- [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/) - Kira and Stephanie share updates on new therapies, how MitoAction collaborates with pharmaceutical companies and clinicians, and why patient voices are vital.
- [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/) - This webinar will present insight into metabolic changes caused by MCAD deficiency, and two clinical trials currently open to test new medications to treat it.
- [FAOD Therapy Updates](https://www.mitoaction.org/resources/faod-therapy-updates/)
- [FAOD Cooking Tips and Tricks](https://www.mitoaction.org/resources/faod-cooking-tips-and-tricks/)
- [Understanding all FAODs](https://www.mitoaction.org/resources/understanding-all-faods/)
- [Clinician Panel](https://www.mitoaction.org/resources/clinician-panel-2/)
- [Approaching Sports and Exercise](https://www.mitoaction.org/resources/approaching-sports-and-exercise/)
- [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/)
- [Ultragenyx Study Updates and New Resources](https://www.mitoaction.org/resources/ultragenyx-study-updates-and-new-resources/)
- [FAOD Case Studies: Patient and Clinician Collaborative Problem Solving](https://www.mitoaction.org/resources/faod-case-studies-patient-and-clinician-collaborative-problem-solving/)
- [Natural History Study Update](https://www.mitoaction.org/resources/natural-history-study-update/)
- [FAOD Guidelines](https://www.mitoaction.org/resources/faod-guidelines/)
- [Understanding the Clinical Trial Process](https://www.mitoaction.org/resources/understanding-the-clinical-trial-process/)
- [Aging with a Fatty Acid Oxidation Disorder](https://www.mitoaction.org/resources/aging-with-a-fatty-acid-oxidation-disorder/)
- [Expert Series: Understanding diseases of mitochondrial DNA maintenance](https://www.mitoaction.org/resources/expert-series-cell-danger-response-healing-copy/) - Dr. Copeland will summarize the genes that are involved in copying our mitochondrial DNA and how they participate in preventing or causing mutations in mitochondrial DNA.
- [Expert Series: Primary Mitochondrial Disease Evaluations: The evolving role of muscle biopsy](https://www.mitoaction.org/resources/expert-series-primary-mitochondrial-disease-evaluations/) - View Slides
- [Expert Series: FAOD For Beginners](https://www.mitoaction.org/resources/expert-series-faod-for-beginners/) - This Expert Series 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.
- [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/) - In this Expert Series presentation, Dr. Richard Boles will be discussing Extensive DNA Sequencing in Cyclic Vomiting and Chronic Fatigue
- [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/) - 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.
- [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/) - Host Marcy Young welcomes Donna back to answer one of the most common questions facing people with mito: What’s actually worth the effort when it comes to food?
- [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/) - Dr. Jacoby and Dr. Noa Sher will discuss the promises, challenges, and clinical outcomes of this therapy, giving a comprehensive review of the data to date.
- [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/) - 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,
- [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/) - In this episode, Marcy welcomes guest Devin to unpack what happens after the diagnostic odyssey—whether you’ve received a genetic answer or are still in limbo.
- [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/) - In this heartfelt conversation, Marcy sits down with mother-daughter duo Angie and Rory to talk about living with LCHAD, a rare fatty acid oxidation disorder.
- [Expert Series: Managing challenges and maximizing success in chronic mechanical ventilation](https://www.mitoaction.org/resources/expert-series-managing-chronic-mechanical-ventilation/) - This discussion will review different approaches towards successful respiratory support for patients with mitochondrial disease.
- [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/) - 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
- [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/) - Host Marcy talks with mito patient Karen Richtman about the healing power of her therapy dog, Hugo— who became both her companion and her partner in service.
- [Energy in Action Podcast Episode 139: Married to Mito](https://www.mitoaction.org/resources/energy-in-action-married-to-mito/) - 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
- [You Won't Miss the Fat - Cooking One Meal for the Whole Family](https://www.mitoaction.org/resources/you-wont-miss-the-fat/) - 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 for more tips and tricks!
- [MitoArtisan's Playtime - Course 5: Art with Low Vision for Mito Artists](https://www.mitoaction.org/resources/mitoartisans-playtime-course-5-low-vision/) - View Slides
- [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/) - Whether you’re a mitopatient, caregiver, or a friend who wants to help, this episode is packed with tools, wisdom, and a reminder that tending to your own heart is the first step in showing up for the people you love.
- [Expert Series: Ins and Outs of the Mito Cocktail: Part 2 of 2](https://www.mitoaction.org/resources/expert-series-mito-cocktail-part-2/) - In 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.
- [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/) - 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
- [Energy in Action Podcast Episode 136: Nutrition Tips for Weak Muscles and Fatigue](https://www.mitoaction.org/resources/energy-in-action-nutrition-tips/) - In this episode,, Marcy and Donna explore how diet and meal timing can help patients manage symptoms like muscle weakness, fatigue, and difficulty swallowing.
- [Energy in Action Podcast Episode 135: How Tisento is Advancing Mitochondrial Research](https://www.mitoaction.org/resources/energy-in-action-tisento-advancing-mitochondrial-research/) - Chad speaks about the origins of Tisento, the science behind their lead compound Zagociguat, and why the company’s name reflects their commitment to patients.
- [Expert Series: All about Ketones](https://www.mitoaction.org/resources/expert-series-mito-all-about-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.
- [Expert Series: Updates on Cardiomyopathy: Diagnosis and Management in FAOD](https://www.mitoaction.org/resources/expert-series-mito-cardiomyopathy/) - In this presentation, Dr. Chatfield will discuss cardiomyopathy and LC-FAODs, share current research, and treatment strategies.
- [Expert Series: Understanding Rare Genetic Variants: What Do My Results Really Mean?](https://www.mitoaction.org/resources/expert-series-mito-rare-genetic-varients/) - In this session, we’ll explore the complexities of interpreting ultra-rare genetic mutations, especially in the context of mitochondrial disease.
- [Expert Series: Serial Casting and Toe Walking](https://www.mitoaction.org/resources/expert-series-mito-serial-casting-and-toe-walking/)
- [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/) - Marcy joins Kuna Tavalin, Senior Policy and Advocacy Advisor at the Council for Exceptional Children, to break down what’s happening at the U.S. DOE.
- [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/) - We will discuss the link between bulbar/upper airway function, respiratory muscle weakness and airway clearance, and how to optimize clearance and lung health.
- [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/) - Rachel joins to walk through her process and personal connection to her work, what makes a dog suitable for service, how training works, and the foundation of every successful placement.
- [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/) - 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 meaningful impact and the role it plays in supporting families affected by mito.
- [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/) - In this episode, Skyler recounts her journey from a childhood of chronic illness to the moment she was taken from her family and placed into foster care.
- [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/) - April and Jen share their experiences with service dogs. From choosing the dog to the training, they reveal how their dogs have become members of their medical team.
- [Expert Series: Introducing and Implementing Principles in Aquatic Therapy](https://www.mitoaction.org/resources/expert-series-mito-aquatic-therapy/) - This discussion will review the principles of exercise in an aquatic environment and how aquatic therapy can positively impact your health with mito.
- [Expert Series: Understanding the Pediatrician's Role in the "Growing Up Years"](https://www.mitoaction.org/resources/expert-series-growing-up-years/) - View Slides
- [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/) - Join host Marcy Young with Devin Shuman—a genetic counselor who lives with a rare form of mito. Devin shares her unique blend of medical knowledge and personal experience.
- [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/) - Join Marcy Young with Lisa Kollins and Taryn Cozzy from The Super Hero Project as they walk us through their process of creating custom superheroes for kids.
- [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/) - Dr. Toufas will explore how our bodies digest nutrients from food, and discuss what difficulties exist in getting supplements/nutrients into our cells.
- [GAII: Finding the Balance](https://www.mitoaction.org/resources/balance/) - 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!
- [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/)
- [Hospital Woes: Understanding Medical Trauma and Resilience](https://www.mitoaction.org/resources/hospital-woes-understanding-medical-trauma-and-resilience/)
- [FAODs, Puberty, and Reproductive Health](https://www.mitoaction.org/resources/faods-puberty-and-reproductive-health/)
- [Logic, Benefit, Harm: Understanding Vitamins and Supplements](https://www.mitoaction.org/resources/logic-benefit-harm-understanding-vitamins-and-supplements/)
- [Building and Maintaining Strength with an FAOD](https://www.mitoaction.org/resources/building-and-maintaining-strength-with-an-faod/)
- [Expert Panel](https://www.mitoaction.org/resources/expert-panel/)
- [FAOD Cooking 101](https://www.mitoaction.org/resources/faod-cooking-101/)
- [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/)
- [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/)
- [FAOD: The Effect on Families and Food Relationships](https://www.mitoaction.org/resources/faod-the-effect-on-families-and-food-relationships/)
- [Understanding Rhabdomyolysis](https://www.mitoaction.org/resources/understanding-rhabdomyolysis/)
- [Clinician Panel](https://www.mitoaction.org/resources/clinician-panel/)
- [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/) - Join Course 4 of the MitoArtisan's Playtime with Christine Knox for the session entitled: The Horse of a Different Color & Stripe.
- [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/) - Tisento and Dr. Goldstein will highlight the importance of clinical trials in the drug approval process and increase your understanding of what to expect if you participate.
- [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/) - Angela Schneider, whose daughter Olivia has a rare form of mito, joins this episode. Learn more about Olivia's diagnosis journey and their Dalia's Wish trip.
- [Energy in Action Podcast Episode 126: Raising Warriors: A Mother’s Journey with VLCAD](https://www.mitoaction.org/resources/energy-in-action-raising-warriors/) - Join host Marcy Young and Megan Crenshaw, mother of two young boys who both have VLCAD in this heartfelt episode of the Energy in Action Podcast.
- [2025 Mito Town Meeting](https://www.mitoaction.org/resources/2025-mito-town-meeting/) - 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. Timestamps with speaker
- [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/) - In this episode of Energy in Action, host Marcy welcomes Tania, a resilient mito patient, as she shares her journey of navigating life with a rare diagnosis.
- [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/) - Whether you’re looking for love, friendship, or community, this episode will inspire you to explore Dateability and celebrate the movement it represents.
- [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/) - 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.
- [Energy in Action Podcast Episode 122: Our Space- Youth Support Group](https://www.mitoaction.org/resources/energy-in-action-out-space/) - 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
- [Energy in Action Podcast Episode 121: April - Mito and Social Media Extraordinaire](https://www.mitoaction.org/resources/energy-in-action-mito-social-media/)
- [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/) - Dr. Bedoyan will present the essentials for understanding PDCD and current clinical trials and research for this disorder at UPMC Children’s Hospital of Pittsburgh.
- [Expert Series: Enhancing the Lives of Mitochondrial Disease Patients Through Compounded Treatment Options](https://www.mitoaction.org/resources/expert-series-enhancin-lives-compounded-treatment/) - Our July Expert Series on Enhancing the Lives of Mitochondrial Disease Patients Through Compounded Treatment Options with Chemistry Rx.
- [The Mito Cocktail - What you need to know!](https://www.mitoaction.org/resources/the-mito-cocktail-what-you-need-to-know/) - 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
- [Energy in Action Podcast Episode 120: Mito Mom Warrior](https://www.mitoaction.org/resources/energy-in-action-mito-mom-warrior/) - 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
- [Energy in Action Podcast Episode 119: Daily Living Aids](https://www.mitoaction.org/resources/energy-in-action-daily-living-aids/) - 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.
- [MitoArtisan's Playtime - Course 2: Eye to the Soul](https://www.mitoaction.org/resources/mitoartisans-playtime-course-2-eye-to-the-soul/) - Course 2 of the MitoArtisan's Playtime program. Follow along with Artist Christine Knox for the Course entitled Eyes to the Soul
- [Energy in Action Podcast Episode 118: Rare Disease in the Room](https://www.mitoaction.org/resources/energy-in-action-rare-disease-in-the-room/) - Danielle Eaves Hernandez is a certified child life specialist and recreational therapist who joins to talk about the tough conversations to be had around rare diseases.
- [Energy in Action Podcast Episode 117: Rare Sisters](https://www.mitoaction.org/resources/energy-in-action-nutritionally-aware-copy/) - 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.
- [MitoArtisan's Playtime - Course 1: Snowdrop and Ladybird](https://www.mitoaction.org/resources/mitoartisans-playtime-course-1-snowdrop-and-ladybird/) - Download the Course 1 Supply List, Description, and Outline Sketch and watch the video below.
- [Expert Series: Mitochondrial Disease and PMM](https://www.mitoaction.org/resources/expert-series-pmm/) - What is PMM? Join Amel Karaa to discuss the terminology used to describe mitochondrial diseases and what constitutes “primary mitochondrial myopathy”.
- [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/) - View Slides
- [Blood Tests for Mitochondrial Disease Diagnosis](https://www.mitoaction.org/resources/blood-tests-for-mitochondrial-disease-diagnosis/) - 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"
- [Current Topics in IV Therapy for Hydration and Nutrition](https://www.mitoaction.org/resources/iv-hydration-and-nutrition-current-topics-with-thrive-rx/) - 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
- [Expert Series: Expanded Access and Compassionate Use of Experimental Therapies](https://www.mitoaction.org/resources/expert-series-expanded-access/) - "Expanded Access" and "Compassionate Use" are terms that are utilized in our rare disease community, but what do they mean? Join the Expert Series to learn more
- [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/) - 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
- [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/) - 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.
- [Energy in Action Podcast Episode 111: Chemistry Rx](https://www.mitoaction.org/resources/energy-in-action-chemistry-rx/) - Jonathan Mordis, Houry Lepedjian and Jennifer Kmetich join me from Chemistry Rx with expertise in compounding formulations for Mitochondrial Disease.
- [Energy in Action Podcast Episode 108: At College with Mitochondrial Disease](https://www.mitoaction.org/resources/energy-in-action-at-college-with-mito/) - 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
- [Energy in Action Podcast Episode 112: Cegat Genetic Opportunities](https://www.mitoaction.org/resources/energy-in-action-cegat-genetic-opportunities/) - Eric Miller and Anil Bhardwaj from CeGaT offer resources and ways to improve patient lives in the mito community and highlight those opportunities for us.
- [Energy in Action Podcast Episode 114: The Life and Legacy of Liel](https://www.mitoaction.org/resources/energy-in-action-legacy-of-liel/) - Tamar Fenton joins to share the story of her daughter, Liel. Tune in to hear about the incredible and impactful work Tamar has done since Liel's death.
- [Energy in Action Podcast Episode 113: Dr. Vockley's Journey in Mitochondrial Disease Care](https://www.mitoaction.org/resources/energy-in-action-dr-vockley/) - Dr. Jerry Vockley works everyday in the development and advancement of mitochondrial disease patient care. Tune in to learn more
- [DTC Testing - Power & Pitfalls](https://www.mitoaction.org/resources/dtc-testing-power-pitfalls/) - 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.
- [Energy in Action Podcast Episode 110: MitoArtisans](https://www.mitoaction.org/resources/energy-in-action-mitoartisans/) - Welcome back to our fellow mito warrior, Christine Knox, who's here to talk about a new program she's implementing for MitoAction, MitoArtisan's Playtime
- [Energy in Action Podcast Episode 109: Breath Taking](https://www.mitoaction.org/resources/energy-in-action-at-breath-taking/) - 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.
- [Expert Series: The Cell Danger Response, Healing, and Mitochondrial Disease](https://www.mitoaction.org/resources/expert-series-cell-danger-response-healing/) - Our April Expert Series presentation with Dr. Robert Naviaux on The Cell Danger Response, Healing, and Mitochondrial Disease.
- [Energy in Action Podcast Episode 107: Mo's Personal Journey](https://www.mitoaction.org/resources/energy-in-action-mos-personal-journey/) - Mo has Maternally Inherited Diabetes and Deafness (MIDD), caused by a mutation in his mitochondrial DNA. Mo joins us to tell his story and to share his diagnostic journey.
- [Energy in Action Podcast Episode 106: Angel Flight New England](https://www.mitoaction.org/resources/energy-in-action-angel-flight-new-england/) - Kirk Walters and Larry Camerlin of Angel Flight New England share about the organization and how they assist patients who need to travel for medical care.
- [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/) - 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
- [Expert Series: Modeling mitochondrial diseases with patient-derived stem cells and brain organoids](https://www.mitoaction.org/resources/expert-series-leigh-syndrome-copy-copy/)
- [Energy in Action Podcast Episode 105: Medical Marijuana for Mitochondrial Disease](https://www.mitoaction.org/resources/energy-in-action-medical-marijuana/) - Dr. Kendall shares her insight and knowledge on the topic of medical marijuana and how it can be used to aid in medical issues.
- [Energy in Action Podcast Episode 104: Courageous Parents Network](https://www.mitoaction.org/resources/energy-in-action-passionate-life-of-josie-copy-copy-copy/) - Blyth Lord and Liz Morris discuss the Courageous Parents Network, and the resources offered for parents and caretakers of children with illness or disease.
- [Energy in Action Podcast Episode 103: Self Care for YOU](https://www.mitoaction.org/resources/energy-in-action-passionate-life-of-josie-copy-copy/) - In this episode of the Energy in Action Podcast, Becky Sansbury shares her best self-care advice with our listeners.
- [Expert Series: Leigh syndrome: A factory for making viruses?](https://www.mitoaction.org/resources/expert-series-leigh-syndrome/) - View Slides
- [Political Advocacy 101](https://www.mitoaction.org/resources/imc-2023-political-advocacy/) - Stephanie Harry's presentation on Political Advocacy at the 2023 International Metabolic Conference.
- [Considerations for Rhabdomyolysis And Return to Activity for FAODs](https://www.mitoaction.org/resources/imc-2023-considerations-for-rhabdomyolysis/) - Dr. Pamela Tucker's presentation on Rhabdomyolysis at the 2023 International Metabolic Conference.
- [Energy in Action Podcast Episode 102: Advocate for YOU](https://www.mitoaction.org/resources/energy-in-action-passionate-life-of-josie-copy/) - 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
- [2024 Mito Town Meeting](https://www.mitoaction.org/resources/2024-mito-town-meeting/) - 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. Watch the Mito
- [Energy in Action Podcast Episode 100: LHON Collective](https://www.mitoaction.org/resources/energy-in-action-podcast-lhon-collective/) - 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
- [Expert Series: Stride Study for PMM patients](https://www.mitoaction.org/resources/expert-series-reneo-stride-update/)
- [Energy in Action Podcast Episode 101: The Passionate Life of Josie](https://www.mitoaction.org/resources/energy-in-action-passionate-life-of-josie/) - 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
- [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/)
- [Ultragenyx Commitment to the LC-FAOD Patient Community](https://www.mitoaction.org/resources/ultragenyx-commitment-to-the-lc-faod-patient-community/)
- [The Magic Bracelet Q&A](https://www.mitoaction.org/resources/the-magic-bracelet-qa/)
- [Sick Day & Emergency Protocols: Helpful and Potentially Harmful](https://www.mitoaction.org/resources/sick-day-emergency-protocols-helpful-and-potentially-harmful/)
- [Research & Clinical Trials Update](https://www.mitoaction.org/resources/research-clinical-trials-update/)
- [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/)
- [Pre-Clinical Treatment Studies in FAOD](https://www.mitoaction.org/resources/pre-clinical-treatment-studies-in-faod/)
- [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/)
- [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/)
- [Newborn Screening in FAOD](https://www.mitoaction.org/resources/newborn-screening-in-faod/)
- [MyMito App - Taking Control of Your Care](https://www.mitoaction.org/resources/mitoaction-mobile-taking-control-of-your-care/)
- [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/)
- [Disability Benefits & Planning](https://www.mitoaction.org/resources/disability-benefits-planning/)
- [Caregiver Panel Discussion](https://www.mitoaction.org/resources/caregiver-panel-discussion/)
- [Cardiac Issues & FAOD](https://www.mitoaction.org/resources/cardiac-issues-faod/)
- [Acylcarnitines: What are They and What Do They Mean?](https://www.mitoaction.org/resources/acylcarnitines-what-are-they-and-what-do-they-mean/)
- [Expert Series: Ceramides: The Unmasked Drivers of VLCADD-Induced Heart Failure](https://www.mitoaction.org/resources/expert-series-mito-ceramides-vlcadd-induced-heart-failure/)
- [Energy in Action Podcast Episode 99: Mito Quilts of Hope](https://www.mitoaction.org/resources/energy-in-action-podcast-quilts-of-hope/) - 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
- [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/) - EPISODE HIGHLIGHTS Highlights Coming Soon! 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
- [Expert Series: Immune Cell Function in Mitochondrial Disease](https://www.mitoaction.org/resources/expert-series-mito-immune-cell-function/) - View Slides
- [Expert Series: Ultra-Rare Mitochondrial Diseases: Development Challenges and Opportunities](https://www.mitoaction.org/resources/expert-series-mito-ultra-rare-mitochondrial-disease-challenges-opportunities/) - View Barth Syndrome Foundation Slides View Stealth Slides
- [Expert Series: Understanding Upcoming MCADD Trials](https://www.mitoaction.org/resources/expert-series-understanding-upcoming-mcadd-trials/) - View Slides
- [Expert Series: LCHADD Retinopathy Update: Moving Toward a Treatment](https://www.mitoaction.org/resources/expert-series-mito-lchadd-retinopathy-update/) - View Slides
- [Mitochondria and Psychiatry](https://www.mitoaction.org/resources/mitochondria-and-psychiatry/) - 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. View Slides
- [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/) - 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
- [Pyruvate Dehydrogenase, Compassionate Use & Clinical Trials](https://www.mitoaction.org/resources/pyruvate-dehydrogenase-compassionate-use-clinical-trials/) - 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.
- [Aging with Mito](https://www.mitoaction.org/resources/aging-with-mito/) - 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 View Slides
- [Energy in Action Podcast Episode 97: The Champ Foundation](https://www.mitoaction.org/resources/energy-in-action-podcast-episode-97-champs-foundation/) - 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, which supports research toward better treatment and a cure for single large-scale mitochondrial deletion syndromes (SLSMDS), like Pearson syndrome.
- [2023 Mito Town Meeting](https://www.mitoaction.org/resources/2023-mito-town-meeting/)
- [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/) - 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
- [Exercise and Nutritional Issues in Mitochondrial Disease](https://www.mitoaction.org/resources/exercisenutrition/) - Join MitoAction and Dr. Mark Tarnopolsky to discuss: What exercises are good for mitochondrial disease and how do we exercise safely? Are there any diets or dietary concerns for patients with mitochondrial disease? What is the current status of the mitochondrial cocktail?
- [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/) - 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,
- [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/) - 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.
- [Expert Series: At the crossroad of mitochondrial disease and mitochondrial dysfunction](https://www.mitoaction.org/resources/expert-series-mito-confusion/)
- [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/) - 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
- [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/)
- [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/) - 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
- [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/) - Hailee The Mito WarriorHailee 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 HIGHLIGHTSCan you share about your particular mitochondrial disease and your diagnosis journey?I
- [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/) - 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
- [LCHADD Retinopathy](https://www.mitoaction.org/resources/lchadd-retinopathy/) - 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
- [Cardiac Complications with LCHADD](https://www.mitoaction.org/resources/cardiac-complications-with-lchadd/) - 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
- [Expert Series: MELAS and Nitric Oxide](https://www.mitoaction.org/resources/expert-series-melas-and-nitric-oxide/) - 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
- [Grandparents As Rare: Find Your Bike](https://www.mitoaction.org/resources/grandparents-as-rare-find-your-bike/) - 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
- [Pennsylvania MitoSocial](https://www.mitoaction.org/resources/pennsylvania-mitosocial/) - Register
- [Indiana MitoSocial](https://www.mitoaction.org/resources/indiana-mitosocial/) - Register
- [Expert Series: Traveling with an FAOD](https://www.mitoaction.org/resources/expert-series-traveling-with-an-faod/) - 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,
- [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/) - ENERGY IN ACTION - EPISODE 088 Exercise for Mitochondrial Patients Dr. Nicole Voet joins us from the Rehabilitation Department of Radboud University Medical Center 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
- [Energy in Action: Shades of Grief](https://www.mitoaction.org/resources/energy-in-action-shades-of-grief/)
- [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/) - 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
- [2023 MitoAction Energy Walk & 5k](https://www.mitoaction.org/resources/2023-mitoaction-energy-walk-5k/) - Learn More or Register Today
- [Parents as Rare: Episode 86](https://www.mitoaction.org/resources/parents-as-rare-episode-86/) - 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
- [International Metabolic Conference](https://www.mitoaction.org/resources/international-metabolic-conference/) - Register
- [Energy in Action: Minds in Motion](https://www.mitoaction.org/resources/energy-in-action-minds-in-motion/)
- [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/)
- [Evening Expert Series: Cooking Demo](https://www.mitoaction.org/resources/evening-expert-series-cooking-demo/) - 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.
- [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/) - Join us for Our Space: a space for young adults with Mito and FAODs to connect, network, and hangout! Register
- [Parents As Rare: Chronically Simple & Simply Unbreakable](https://www.mitoaction.org/resources/par-chronically-simple/) - PARENTS AS RARE - EPISODE 039Chronically 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
- [Traveling with an FAOD](https://www.mitoaction.org/resources/traveling-with-an-faod/) - 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
- [Energy in Action: Akron Children's Hospital - Meet the Mito Clinic Team](https://www.mitoaction.org/resources/energy-in-action-episode-81/) - 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
- [PARENTS AS RARE - EPISODE 83](https://www.mitoaction.org/resources/parents-as-rare-episode-82/) - 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
- [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/) - 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
- [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/)
- [Marcy Young - Living with CPEO](https://www.mitoaction.org/resources/marcy-young-living-with-cpeo/) - 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
- [Stealth BioTherapeutics & NuPOWER Trial Update](https://www.mitoaction.org/resources/stealth-biotherapeutics-nupower-trial-update/) - 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
- [MitoSocial](https://www.mitoaction.org/resources/mitosocial/) - 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
- [Men's Support Call](https://www.mitoaction.org/resources/mens-support-call/) - 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
- [Fatty Acid Oxidation Disorders](https://www.mitoaction.org/resources/fatty-acid-oxidation-disorders/) - 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
- [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/) - 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.
- [FAOD: The Other Mitochondrial Energy Diseases](https://www.mitoaction.org/resources/upcoming-dr-vockley-faod-the-other-mitochondrial-energy-diseases/)
- [Ultragenyx's LC-FAOD Odyssey Study: From Patient Experience to Patient Empowerment](https://www.mitoaction.org/resources/odyssey/) - Join MitoAction, Eliza Kruger and Kristin Voorhees from Ultragenyx Pharmaceutical 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
- [Introducing the Ultragenyx LC-FAOD Disease Monitoring Programs: Our Commitment to Advancing LC-FAOD Research Globally](https://www.mitoaction.org/resources/dmp/) - Join MitoAction, Laura Pisani-Betancourt and Kristin Voorhees from Ultragenyx Pharmaceutical 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
- [FAOD 101 with Dr. Jerry Vockley](https://www.mitoaction.org/resources/faod-101-with-dr-jerry-vockley/) - 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.
- [FAOD Diagnosis 101 - Dr. Georgianne Arnold](https://www.mitoaction.org/resources/faod-diagnosis-101-dr-georgianne-arnold/) - Get ready for MitoAction's 2nd Annual International Metabolic Conference with a quick review of FAOD diagnosis.
- [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/)
- [Exercise Physiology & FAODs - Dr. Melanie Gillingham](https://www.mitoaction.org/resources/exercise-physiology-faods-dr-melanie-gillingham/)
- [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/)
- [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/) - Dr. Eric Goetzman discusses the impact of FAOD on the liver and immune system.
- [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/) - 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.
- [Challenging the Status Quo](https://www.mitoaction.org/resources/challenging-the-status-quo/) - 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
- [The Navigation Project](https://www.mitoaction.org/resources/the-navigation-project/) - 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
- [Good Grief and the Holidays](https://www.mitoaction.org/resources/good-grief-and-the-holidays/) - ENERGY IN ACTION - EPISODE 071 Lisa Athan is the Founder and Executive Director of Griefspeaks. 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
- [EPISODE 033: Parents as Rare - Emma & Spencer: The Heart of Parents as Rare](https://www.mitoaction.org/resources/heart-of-par/) - PARENTS AS RARE - EPISODE 033Emma & 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
- [Episode 54: Advocate Like a Father](https://www.mitoaction.org/resources/advocate-like-a-father/) -  ENERGY IN ACTION - EPISODE 054Advocate 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
- [EPISODE 058: TJ Strong](https://www.mitoaction.org/resources/tj-strong/) -  ENERGY IN ACTION - EPISODE 058TJ 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
- [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/) - 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.
- [A LC-FAOD Treatment from Ultragenyx and Available Resources - for US members only](https://www.mitoaction.org/resources/faodresources/) - 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. *This podcast episode is intended for U.S. members of
- [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 052Lisa 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
- [Dr. Stephanie Mihalas - Find Your Balance, Find Your Center](https://www.mitoaction.org/resources/dr-stephanie-mihalas-find-your-balance-find-your-center/) -  PARENTS AS RARE - EPISODE 055Dr. 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
- [Chris Freeman - Chronic Pain Dad](https://www.mitoaction.org/resources/chris-freeman-chronic-pain-dad/) - 
- [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/) - 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
- [Energy In Action Launch](https://www.mitoaction.org/resources/energy-in-action-launch/) - 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
- [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/) - Meet Alex Salser and learn about her journey with LCHAD.
- [Finding My Path - A Young Adult's Journey To Live Beyond His Diagnosis.](https://www.mitoaction.org/resources/kalick112520/) - Meet Jordan Kalick and his mom Stacy Kalick!
- [Raising Christopher - A Mom's Journey with LCHAD](https://www.mitoaction.org/resources/sharry120220/) - Meet Stephanie Harry!
- [The Light at the End of the Tunnel...a mom's journey with MERRF Syndrome](https://www.mitoaction.org/resources/jfein120920/) - Meet Jessica Fein!
- [MitoSantas - Bringing Smiles to the Faces of Children Affected by Mitochondrial Disease](https://www.mitoaction.org/resources/mitosantas121620/) - Learn about our MitoSantas program and meet head Elf - Jennifer Schwartzott!
- [COVID Preparedness and Building Your Flu Box...Tips to Help You Stay Safe.](https://www.mitoaction.org/resources/efogg122320/) - Meet Erich Fogg!
- [The Positive Power of Peach...A Young Adults Inspiring Journey](https://www.mitoaction.org/resources/jwoods123020/) - Meet Jenevieve Woods!
- [Life with Frankie...A Mom's Journey with Mito](https://www.mitoaction.org/resources/sleone012021/) - Meet Sue Leone!
- [If You Keep the Patient First, You'll Never Go Wrong.](https://www.mitoaction.org/resources/zogenix012721/) - Meet Laurie & Carla from Zogenix!
- [No One Fights Alone...A Family's Journey with Mito](https://www.mitoaction.org/resources/butler020421/) - Meet Mito-Mom Amanda Butler and her 2 children, Amanda and Layton!
- [Owning My Story...The DadVocate](https://www.mitoaction.org/resources/ajohnson021021/) - Meet mito warrior and DadVocate, Adam Johnson!
- [Service Dogs...A Man's Best Friend](https://www.mitoaction.org/resources/candocanines021721/) - https://episodes.castos.com/5ed548a1cb08d7-35811046/Can-Do-Canine-Podcast.mp3 Learn about service dogs with Can Do Canines and hear about their upcoming event, The Fetching Ball.
- [Making Your Voice Heard Through Song](https://www.mitoaction.org/resources/hearyoursong030321/) - https://episodes.castos.com/5ed548a1cb08d7-35811046/Hear-Your-Song-Podcast.mp3 Meet Dan & Rebecca - the co-founders of Hear Your Song!
- [The Effects of Having a Diagnosis of TK2](https://www.mitoaction.org/resources/zogenix031021/) - Meet Mark Jensen and Dagmar Amtmann and learn about their research study with Zogenix!
- [Adventure Awaits...A Teen's Inspiring Journey with Mito](https://www.mitoaction.org/resources/aleeds031921/) - Meet Annie Leeds!
- [It's Probably Genetic](https://www.mitoaction.org/resources/probablygenetic032721/) - Tune in to meet Lukas from Probably Genetic and learn how you can find out if their DNA test is right for you!
- [Lifeline: It's More Than What You Think](https://www.mitoaction.org/resources/oleyfoundation040321/) - Tune in to learn more about The Oley Foundation!
- [A Mom and Daughter's Journey With Mito!](https://www.mitoaction.org/resources/fobar041221/) - Meet Kari and Haliee Fobar!
- [Exploring Palliative Care](https://www.mitoaction.org/resources/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. PARENTS AS RARE - EPISODE 074 Exploring Palliative Care Kimberly Matias, a social worker, and Michelle Hurty, a physician assistant, join me for
- [Caregiver Toolboxes...A Lifeline and Support](https://www.mitoaction.org/resources/caregivers042221/) - Meet Nichole Goble and learn more about the Caregivers Action Network!
- [Chronically-Inspired](https://www.mitoaction.org/resources/aarguin042821/) - Meet April Aguin!
- [One Step Closer](https://www.mitoaction.org/resources/mitocanada050721/) - Listen it to meet MitoCanada's Chief Executive Officer Kate Murray and Chief Development Officer Catherine Mulvale.
- [Patients as Partners in Ultragenyx LC-FAOD Research](https://www.mitoaction.org/resources/ultragenyx051221/) - Join Energy in Action host, Stephanie Tomlinson as she interviews Emil Kakkis and Jessica Riviere from Ultragenyx Pharmaceutical. 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
- [Having a Voice That Deserves To Be Heard](https://www.mitoaction.org/resources/having-a-voice-that-deserves-to-be-heard/) - Meet the team at Rare Patient Voice and learn how to make your voice heard!
- [Giving You the Power to Take Control of Your Healthcare Journey While Moving Mito Research](https://www.mitoaction.org/resources/mitoactionmobile/) - 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.
- [Another Helping](https://www.mitoaction.org/resources/anotherhelping/) - 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.
- [Fight - Research - Hope - Cure](https://www.mitoaction.org/resources/curemitofoundation/) - Meet Kasey Woleben and Sophia Zilber from the Cure Mito Foundation! 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
- [Community Collaboration to Push Clinical Trials Forward](https://www.mitoaction.org/resources/communitycollaboration/) - ENERGY IN ACTION - EPISODE 029AllStripes & 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
- [Trailer - Parents as Rare](https://www.mitoaction.org/resources/trailerpar/) - 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.
- [Making Wishes Come True - A Partnership with Give Kids the World Village](https://www.mitoaction.org/resources/gktwv/) - ENERGY IN ACTION - EPISODE 031Making 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
- [Rare New England Annual Conference](https://www.mitoaction.org/resources/rneconference/) - ENERGY IN ACTION - EPISODE 032RNE 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
- [The Mito Girl](https://www.mitoaction.org/resources/mitogirl/) - ENERGY IN ACTION - EPISODE 034Meet 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.
- [The MitoSantas Program](https://www.mitoaction.org/resources/mitosantas/) - ENERGY IN ACTION - EPISODE 035The 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?
- [Parents as Rare: Parenting with VCP Disease](https://www.mitoaction.org/resources/par_peck/) -  PARENTS AS RARE - EPISODE 036Parenting 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
- [The Patient Teacher Program](https://www.mitoaction.org/resources/the-patient-teacher-program/) - 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
- [Patient Led Trials](https://www.mitoaction.org/resources/patient-led-trials/) -  ENERGY IN ACTION - EPISODE 038Patient 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
- [Silver Linings with Sarah Kate](https://www.mitoaction.org/resources/silverlinings/) -  ENERGY IN ACTION - EPISODE 040Silver 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
- [Everylife Foundation Newborn Screening](https://www.mitoaction.org/resources/everylife-foundation-newborn-screening/) -  ENERGY IN ACTION - EPISODE 041EveryLife 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
- [Empowering Parents Nationwide](https://www.mitoaction.org/resources/empowering-parents-nationwide/) -  ENERGY IN ACTION - EPISODE 042Empowering 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
- [Parents as Rare: Cowden Syndrome and Male Mental Health - David Ross](https://www.mitoaction.org/resources/par_davidross/) - PARENTS AS RARE - EPISODE 043Cowden 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.
- [Removing Barriers in Ultra-Rare](https://www.mitoaction.org/resources/curears/) - ENERGY IN ACTION - EPISODE 044Removing 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
- [Live Life, Dream Big, Be Positive](https://www.mitoaction.org/resources/live-life-dream-big-be-positive/) - ENERGY IN ACTION - EPISODE 045Live 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
- [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/) - PARENTS AS RARE - EPISODE 046Family 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
- [The Strength of a Mom](https://www.mitoaction.org/resources/the-strength-of-a-mom/) - ENERGY IN ACTION - EPISODE 047The 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
- [Parents as Rare: Parenting & Living Life With Chronic Pain](https://www.mitoaction.org/resources/parents-as-rare-parenting-living-life-with-chronic-pain/) - PARENTS AS RARE - EPISODE 048Parenting & 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
- [Living Rare - An Adult's Perspective](https://www.mitoaction.org/resources/living-rare-an-adults-perspective/) -  ENERGY IN ACTION - EPISODE 049Living 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
- [Top 10 Tips for Empowerment & Being Your Own Advocate](https://www.mitoaction.org/resources/top-10-tips-for-empowerment-being-your-own-advocate/) - ENERGY IN ACTION - EPISODE 051Top 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
- [Life with Leigh's](https://www.mitoaction.org/resources/life-with-leighs/) - https://5ed548a1cb08d7-35811046.castos.com/player/1193032 ENERGY IN ACTION - EPISODE 058Life 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
- [Owning My Story](https://www.mitoaction.org/resources/owning-my-story/) -  PARENTS AS RARE - EPISODE 059Owning 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
- [Meet the Bartles](https://www.mitoaction.org/resources/meet-the-bartles/) - ENERGY IN ACTION - EPISODE 060Meet 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
- [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/) - PARENTS AS RARE - EPISODE 062Mary 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
- [School Tips for Kids with Mito](https://www.mitoaction.org/resources/education-and-school-advocacy-tips-and-cristy-balcells-and-kirsten-casale/) - 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.
- [Stress Relief for the Holidays](https://www.mitoaction.org/resources/stress-relief-for-the-holidays/) - 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!
- [2019 Mito Town Meeting](https://www.mitoaction.org/resources/2019-mito-town-hall/) - 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
- [Help is on the Way!](https://www.mitoaction.org/resources/help-is-on-the-way/) - 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
- [Genetic Testing - Genome Sequencing A-Z for Mitochondrial Disease](https://www.mitoaction.org/resources/genetic-testing-genome-sequencing-a-z-for-mitochondrial-disease/)
- [2020 Mito Town Hall](https://www.mitoaction.org/resources/2020townhall/) - 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
- [The Power of Rare Disease Advocacy](https://www.mitoaction.org/resources/the-power-of-rare-disease-advocacy/) - 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!
- [Understanding the New Recommendations on the Safety of Drug Use in Patients with a Primary Mitochondrial Disease](https://www.mitoaction.org/resources/safetyofdruguse/) - 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
- [Ins and Outs of Social Security](https://www.mitoaction.org/resources/hines-ssi/) - 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
- [Q&A - Impacts of COVID-19 on FAOD's](https://www.mitoaction.org/resources/covid19-faod/) - Join MitoAction and Dr. Jerry Vockley from UPMC Children’s Hospital of Pittsburgh 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" section on the
- [Medical Cannabis & Mito](https://www.mitoaction.org/resources/medicalcannabis/) - Join MitoAction and Dr. Fran Kendall of VMP Genetics 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.
- [Mitochondrial Genetics and Diseases](https://www.mitoaction.org/resources/drwallace/) - 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!
- [IEP Considerations for Children with Mitochondrial Disorders](https://www.mitoaction.org/resources/iepconsiderations/) - 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.
- [Mito Community Call with the Two Disabled Dudes](https://www.mitoaction.org/resources/twodisableddudes/) - 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
- [Overlap Between Mitochondrial Disorders and Disorders of Neurotransmitter Metabolism](https://www.mitoaction.org/resources/anselm2020/) - Join MitoAction and Dr. Irina Anselm for our October Mito Expert Series presentation titled, “Overlap Between Mitochondrial Disorders and Disorders of Neurotransmitter Metabolism”.
- [PTC743 (Vatiquinone) for the Treatment of Mitochondrial Disease With Associated Epilepsy](https://www.mitoaction.org/resources/2020ptc743/) - 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”.
- [2021 Mito Town Hall Meeting](https://www.mitoaction.org/resources/2021townhall/) - 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.
- [Patients as Partners in Drug Development](https://www.mitoaction.org/resources/patientpartners/) - Join MitoAction and Dr. Madhu Davies from Reneo Pharmaceuticals for our February Monthly Mito Expert Series titled “Patients as Partners in Drug Development.”
- [Clinical Trials and COVID-19](https://www.mitoaction.org/resources/ptc022421/) - Meet Dr. Matthew Klein from PTC Therapeutics and learn how to best navigate clinical trials during COVID-19.
- [Whole Genome Sequencing for Rare Disorders: The Future Is Here](https://www.mitoaction.org/resources/diagnostics/) - 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.
- [Clinical Trials: Why you should care and why you should participate.  How do we know what we know?](https://www.mitoaction.org/resources/clinicaltrials/) - Join MitoAction and Dr. Jerry Vockley from University of Pittsburgh Children’s Hospital on Friday, May 14, 2021 for our monthly expert series presentation!
- [Moving Mito Medicine: Reneo Strides Study](https://www.mitoaction.org/resources/strides/) - 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.
- [Back to School...IEP's, 504 Plans and More!](https://www.mitoaction.org/resources/backtoschool/) - 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.
- [Getting the Mito Community Research Ready](https://www.mitoaction.org/resources/researchready/) - 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,
- [The Mito Cocktail Revisited](https://www.mitoaction.org/resources/mitococktail/) - 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,
- [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/) - 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
- [The Mito Disease Drug Development Journey](https://www.mitoaction.org/resources/the-mito-disease-drug-development-journey/) - Join Dr. Matt Klein from PTC Therapeutics , 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!
- [2022 Mito Town Meeting](https://www.mitoaction.org/resources/2022-town-meeting/) - 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.
- [Sick Day & Emergency Protocols: Helpful & Potentially Harmful](https://www.mitoaction.org/resources/protocols/) - 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.
- [MELAS Spectrum Disorders and Sonlicromanol: Progress Update](https://www.mitoaction.org/resources/melasupdate/) - 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
- [CDC New Opioid Guideline – What This Means for the Mito Community](https://www.mitoaction.org/resources/pain/) - 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.
- [Lessons Learned from the COVID-19 Pandemic in Children with Disorders of Mitochondrial Metabolism](https://www.mitoaction.org/resources/covidlessons/) - 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
- [The Menstrual Cycle as a Vital Sign in Navigating Rare Disease](https://www.mitoaction.org/resources/vitalsign/) - 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
- [7 Simple Strategies for Sibling Support](https://www.mitoaction.org/resources/siblingsupport/) - 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.
- [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/) - 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
- [Navigating the Financial Minefield of Genetic Testing](https://www.mitoaction.org/resources/navigating-the-financial-minefield-of-genetic-testing/) - 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
- [Transition Tips for Patients and Parents](https://www.mitoaction.org/resources/transition-tips-for-patients-and-parents/) - 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.
- [Grief and Mito](https://www.mitoaction.org/resources/grief-and-mito/) - 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.
- [Q&A with Compounding Pharmacists](https://www.mitoaction.org/resources/questions-and-answers-with-compounding-pharmacists/) - 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 answer
- [Medical Ethics and Patient Rights](https://www.mitoaction.org/resources/mitoaction-medical-ethics-and-patient-rights/)
- [Mito-Autism Q&A and Parent/Patient](https://www.mitoaction.org/resources/mito-autism-qa-and-parent-patient/) - "Parent/Patient Discussion of Mitochondrial Toxicity" by MitoAction.
- [Mito-autism support group call and discussion of PANDAS](https://www.mitoaction.org/resources/mito-autism-support-group-call-and-discussion-of-pandas/)
- [Interview with Cristy Balcells](https://www.mitoaction.org/resources/interview-with-cristy-balcells-september-30th-2007/) - Interview with the Director of MitoAction.org; Cristy Balcells.
- [Dealing with Holiday Stress](https://www.mitoaction.org/resources/meeting-holiday-stress-december-7th-2007/) - Mitoaction discussion dealing with holiday stress and the importance of watching fluid intake.
- [Can People with Mitochondrial Disease Exercise?](https://www.mitoaction.org/resources/can-people-with-mitochondrial-disease-exercise/) - 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.
- [Committee Chairs](https://www.mitoaction.org/resources/meeting-committee-chairs-january-28th-2008/) - The MitoAction committee chairs met by conference call to discuss the exciting ideas and projects ahead for 2008.
- [What you Should Know About Disability Rights](https://www.mitoaction.org/resources/meeting-disability-advocacy-february-1st-2008/) - 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,
- [The Mito Cocktail Explained](https://www.mitoaction.org/resources/meeting-the-mito-cocktail-march-7th-2008/) - Saad Dinno, RPh, a compounding pharmacist at Acton Pharmacy and Dr. Virginia Tawa, PharmD, discussed the ingredients which make up the mysterious "Mito Cocktail."
- [Dysautonomia: Body Temperature, Heart Rate, and More!](https://www.mitoaction.org/resources/meeting-dysautonomia-april-4th-2008/) - 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) offers information about several types of dysautonomia, including POTS (postural orthostatic tachycardia syndrome). Experienced by many people with
- [Cool Ideas for Adults and Kids with Heat Intolerance](https://www.mitoaction.org/resources/meeting-heat-intolerance-may-2nd-2008/) - 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?
- [Multiple Specialists](https://www.mitoaction.org/resources/meeting-multiple-specialists-june-6th-2008/) - MitoAction meeting discussing multiple specialists
- [Pain](https://www.mitoaction.org/resources/meeting-pain-july-11-2008/) - 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.
- [Drug Trial Begins Targeting Mitochondrial Diseases](https://www.mitoaction.org/resources/drug-trial-begins-targeting-mitochondrial-diseases/) - 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
- [Mitochondria: The BIG Picture](https://www.mitoaction.org/resources/mitochondria-the-big-picture/) - Dr. Westphal will discuss "Mitochondria: The Big Picture", highlighting recent advances in understanding the role of mitochondrial function and diseases of aging, such as Type 2 diabetes, Alzheimer's, Parkinson's and cancer.
- [The Dosing Debate: Coq10 and Creatine](https://www.mitoaction.org/resources/meeting-coq10-and-creatine-aug-1-2008/) - 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.
- [Tummy Troubles](https://www.mitoaction.org/resources/october-mito-meeting-tummy-troubles/) - 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
- [Teen Interview with Reed](https://www.mitoaction.org/resources/teen-interview-with-reed/)
- [Teen Interview with Morgan](https://www.mitoaction.org/resources/teen-interview-with-morgan/)
- [Teen Interview with Donovan](https://www.mitoaction.org/resources/teen-interview-with-donovan/)
- [Teen Interview with Kristin](https://www.mitoaction.org/resources/teen-interview-with-kristin/)
- [Teen Interview with Annalise](https://www.mitoaction.org/resources/teen-interview-with-annalise/)
- [Teen Interview with Harrison](https://www.mitoaction.org/resources/teen-interview-with-harrison/)
- [Teen Interview with Olivia](https://www.mitoaction.org/resources/teen-interview-with-olivia/)
- ["Thinking" About Mito: Neuropsychological Problems in Mitochondrial Disease](https://www.mitoaction.org/resources/thinking-about-mito-neuropsychological-problems-in-mitochondrial-disease/) - 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
- [Genetic Inheritance in Mitochondrial Disease: Fact vs. Fiction](https://www.mitoaction.org/resources/genetic-inheritance-patterns-in-mito-with-guest-speaker-katherine-sims/) - 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.
- [Ideas from an Occupational Therapist](https://www.mitoaction.org/resources/ideas-from-an-occupational-therapist-with-speaker-susan-orloff-otr-l/) - 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.
- [MitoAction Interview with Jamie Emory](https://www.mitoaction.org/resources/mitoaction-interview-with-jamie-emory/)
- [Autism and Mitochondrial Disorders: How Much Do We Really Know?](https://www.mitoaction.org/resources/autism-and-mitochondrial-disease/) - 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
- [MitoAction Interview with Stephen](https://www.mitoaction.org/resources/mitoaction-interview-with-stephen/)
- [Special Needs Planning](https://www.mitoaction.org/resources/special-needs-planning-workshop-with-jack-raycroft/) - 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
- [Palliative Care and Hospice](https://www.mitoaction.org/resources/palliative-care-and-hospice/) - 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.
- [Drug Toxicity and Mitochondria](https://www.mitoaction.org/resources/drug-toxicity-and-mitochondria/) - 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". 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
- [Medical Foods for Mito](https://www.mitoaction.org/resources/medical-foods-for-mito/) - 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? (Click to see the video) How do medical foods like coenzyme q10, creatine monohydrate,
- [To Work or Not to Work](https://www.mitoaction.org/resources/to-work-or-not-to-work/) - 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,
- [Munchausens by Proxy Accusations in Children with Mitochondrial Disease](https://www.mitoaction.org/resources/munchausens-by-proxy-accusations-in-children-with-mitochondrial-disease/) - 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
- [Coping with Mitochondrial Disease](https://www.mitoaction.org/resources/coping-with-mitochondrial-disease/) - 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.
- [Update on Mito Treatment Approaches](https://www.mitoaction.org/resources/update-on-mito-treatment-approaches/) - Learn about current treatment options.
- [Overwhelmed No More - Tips for Enjoying the Holidays!](https://www.mitoaction.org/resources/overwhelmed-no-more/) - 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
- [Psychiatric Disorders, Meds and Mito](https://www.mitoaction.org/resources/dr-marcus-favero-speaks-on-psychiatric-disorders-meds-and-mito/) - 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?
- [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/) - 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
- [Nutrition for Mitochondrial Disease Patients](https://www.mitoaction.org/resources/nutrition-for-mitochondrial-disease-patients/) - 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?
- [Mitochondrial Toxicity](https://www.mitoaction.org/resources/mitochondrial-toxicity/) - 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
- [Muscle Biopsy Testing with Dr Fran Kendall](https://www.mitoaction.org/resources/muscle-biopsy-testing-with-dr-fran-kendall/) - 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
- [Hyperbaric Oxygen Therapy use in Mito Patients](https://www.mitoaction.org/resources/use-of-hyperbaric-oxygen-therapy-for-mitochondrial-disease-patients/) - 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
- [Caring for the Whole Patient](https://www.mitoaction.org/resources/caring-for-the-whole-patient/) - 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
- [Mito Awareness Radio Clip](https://www.mitoaction.org/resources/mito-awareness-radio-clip/) - A mito awareness week radio clip that you can submit to your local radio stations.
- [Support for Siblings of Kids with Mitochondrial Disease](https://www.mitoaction.org/resources/support-for-siblings-of-kids-with-mitochondrial-disease/) - 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
- [Exercise](https://www.mitoaction.org/resources/research-and-realities-of-exercise/) - 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
- [Interview with Al Muto from Pine Pharmacy](https://www.mitoaction.org/resources/interview-with-al-muto-from-pine-pharmacy/)
- [Mitochondrial Function Disorders](https://www.mitoaction.org/resources/mitochondrial-function-disorders/) - 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
- [Genetics of Mitochondrial Disease](https://www.mitoaction.org/resources/genetics-of-mitochondrial-disease/) - 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
- [Mito Diagnosis and Autism](https://www.mitoaction.org/resources/mito-diagnosis-and-autism/) - An informal discussion with Cristy Balcells on Mito diagnosis and Autism from our February 2011 Autism-Mito Support Meeting.
- [Sleep Disorders](https://www.mitoaction.org/resources/sleep-disorders-with-dr-weiss/) - "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
- [IV (Venous) Use: Access and Complications](https://www.mitoaction.org/resources/mona-inocentes-discusses-iv-access/) - 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 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
- [Dysautonomia](https://www.mitoaction.org/resources/dysautonomia-with-dr-boles/) - 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
- [Service Dogs for Children and Adults with Mito](https://www.mitoaction.org/resources/service-dogs-for-children-and-adults-with-mito/) - 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
- [Mito-Autism: Information for Parents and Clinicians](https://www.mitoaction.org/resources/dr-fran-kendall-speaks-about-mito-autism/) - 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
- [Seizure Disorders and Epilepsy](https://www.mitoaction.org/resources/seizures-stroeks-an-dmigraines-with-dr-mary-kay-koenig/) - 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
- [Immunodeficiency Disorders and Mitochondrial Disease](https://www.mitoaction.org/resources/immunodeficiency-disorders-and-mitochondrial-disease/) - 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?
- [Home Nutrition Support](https://www.mitoaction.org/resources/home-nutrition-support-with-guest-deb-pfister-from-nutrithrive/) - Help! G-tubes, J-tubes, TPN - Where do we begin? MitoAction welcomed guest speaker and experienced home nutrition support expert Deborah Pfister from ThriveRx. 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
- [How Do I Know I Have Mito?](https://www.mitoaction.org/resources/how-do-i-know-i-have-mito/) - 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.
- [2012 Mito Town Meeting](https://www.mitoaction.org/resources/2012-mito-town-meeting/) - 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
- [Advocating Responsibly and Communicating Effectively](https://www.mitoaction.org/resources/advocating-responsibly-and-communicating-effectively/) - 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, Inc. discusses: What is medical child abuse? Munchausen's
- [Practical Aspects of a Mitochondrial Disease Diagnosis](https://www.mitoaction.org/resources/practical-approaches-to-a-mito-diagnosis-with-dr-richard-haas/) - 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
- [Interpreting Common Lab Tests for Mitochondrial Disease](https://www.mitoaction.org/resources/interpreting-labs-101-with-dr-mark-korson/) - 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
- [9 Tips to Ensure Your Insurer Pays Up](https://www.mitoaction.org/resources/9-tips-to-ensure-your-insurer-pays-up/) - 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
- [Mito, Autism and Cerebral Folate Deficiency](https://www.mitoaction.org/resources/mito-autism-and-cerebral-folate-deficiency/) - 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
- [Edison Pharma EPI-743 Clinical Trial Meeting](https://www.mitoaction.org/resources/edison-pharma-epi-743-clinical-trial-meeting/) - Results from the Edison Pharma EPI-743 Phase 2A Leigh Syndrome Trial: An update with Dr. Guy Miller and Dr. Greg Enns
- [Exercise and Physical Therapy](https://www.mitoaction.org/resources/exercise-and-physical-therapy/) - 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
- [Sick Protocol for Mito Patients with Dr. Korson](https://www.mitoaction.org/resources/sick-protocol-for-mito-patients-with-dr-korson/) - 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
- [2013 Mito Town Meeting](https://www.mitoaction.org/resources/2013-mito-town-meeting/) - 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
- [Parents, Stress and Coping with Mitochondrial Disease](https://www.mitoaction.org/resources/parents-stress-and-coping-mitochondrial-disease/) - 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
- [Get More from Every Doctor's Appointment](https://www.mitoaction.org/resources/get-more-from-every-doctors-appointment/) - 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
- [EPI-743 Leighs Syndrome Trial Update](https://www.mitoaction.org/resources/epi-743-leighs-syndrome-trial-update-april-2013/) - An update from Edison Pharma on the Development of EPI-743 clinical trial for children with Leigh Syndrome. Topics for this call include: Status on EPI-743 clinical development; Status on EPI-743 US clinical trials Status on EPI-743 European clinical trials
- [Transitioning for Teens and Young Adults with Mitochondrial Disease](https://www.mitoaction.org/resources/transitioning-for-teens-and-young-adults-with-mitochondrial-disease/) - 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 in December 2012, we will talk about attitudes, behaviors and skills that were most common
- [Interpreting Genetic Testing](https://www.mitoaction.org/resources/interpreting-genetic-testing/) - 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
- [Introducing Bendavia](https://www.mitoaction.org/resources/introducing-bendavia/) - 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
- [EPI-743 Clinical Trial Update](https://www.mitoaction.org/resources/epi-743-clinical-trial-update-october-2013/) - Dr. Matt Kline & Dr. Guy Miller
- [Creatine Deficiency and Supplementation](https://www.mitoaction.org/resources/creatine-deficiency-and-supplementation-with-dr-joseph-clark/) - 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
- [CoQ-10 Update](https://www.mitoaction.org/resources/coq-10-update/) - A conversation with compounding pharmacist Arthur Margolis from America's Compounding Center, September 7, 2007 by teleconference.
- [2014 Mito Town Meeting](https://www.mitoaction.org/resources/2014-mito-town-meeting/) - 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.
- [Edison Pharma's Partnership Offers Hope for Mito Communuty](https://www.mitoaction.org/resources/edison-pharmas-partnership-offers-hope-for-mito-communuty/) - 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
- [Dysmotility and Diet](https://www.mitoaction.org/resources/dysmotility-and-diet-2/) - 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
- [Hearing Loss in Mitochondrial Disease](https://www.mitoaction.org/resources/hearing-loss-in-mitochondrial-disease/) - 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
- [Autism, Mito and Oxidative Stress](https://www.mitoaction.org/resources/autism-mito-and-oxidative-stress/) - 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
- [EPI-743](https://www.mitoaction.org/resources/epi-743/) - An update from Edison Pharma's Dr. Guy Miller & Dr. Matthew Kline
- [Immune Function and Mitochondrial Disease](https://www.mitoaction.org/resources/immune-function-and-mitochondrial-disease/) - 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
- [2014 Mito Awareness Rally](https://www.mitoaction.org/resources/2014-mito-awareness-rally/) - 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.
- [Psychiatric Disorders in Mitochondrial Disease](https://www.mitoaction.org/resources/psychiatric-disorders-in-mitochondrial-disease/) - 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
- [PDCD (Pyruvate Dehydrogenase Complex Deficiency)](https://www.mitoaction.org/resources/pcdc-pyruvate-dehydrogenase-complex-deficiency/) - 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.
- [Complex Medical Needs and Medical Child Abuse Accusations](https://www.mitoaction.org/resources/complex-medical-needs-and-medical-child-abuse-accusations/) - 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
- [2015 Mito Town Meeting](https://www.mitoaction.org/resources/2015-mito-town-meeting/) - 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
- [Stealth BT Mitochondrial Myopathy Trial](https://www.mitoaction.org/resources/stealth-bt-mitochondrial-myopathy-trial/) - 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), 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
- [Cannabis Oil to Treat Mitochondrial Disease](https://www.mitoaction.org/resources/cannabis-oil-to-treat-mitochondrial-disease/) - 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
- [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/) - 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?
- [Getting Involved: Awareness Walk & Events 2015](https://www.mitoaction.org/resources/getting-involved-awareness-walk-events-2015/) - Update by Cristy Balcells about ways to get involved and spread awareness.
- [Social Security Disability Insurance and Supplemental Security Income](https://www.mitoaction.org/resources/social-security-disability-insurance/) - 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
- [Back to School Tips](https://www.mitoaction.org/resources/back-to-school-tips/) - 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
- [Mito Supplement Therapy](https://www.mitoaction.org/resources/mito-supplement-therapy/) - 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 to learn more. Understand what supplements are most commonly
- [Mitochondrial Disease and Toxins](https://www.mitoaction.org/resources/mitochondrial-disease-and-toxins/) - 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
- [Mitochondrial Myopathy](https://www.mitoaction.org/resources/mitochondrial-myopathy-with-dr-bruce-cohen/) - 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
- [Diet, Dysmotility, and Tube Feeding](https://www.mitoaction.org/resources/diet-dysmobility-and-tube-feeding/) - 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,
- [2016 Mito Town Meeting](https://www.mitoaction.org/resources/2016-mito-town-meeting/) - 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!
- [NORD Public Policy Team](https://www.mitoaction.org/resources/nord-public-policy-team/) - 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
- [Incapacity Planning and Guardianship](https://www.mitoaction.org/resources/incapacity-planning-and-guardianship/) - 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
- [Mitochondrial Medicine Society Update 2016](https://www.mitoaction.org/resources/mitochondrial-medicine-society-update-2016/) - 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
- [Extended School Year and Summer Camp Planning](https://www.mitoaction.org/resources/extended-school-year-and-summer-camp-planning-with-annette-hines-esq/) - Summertime is a time of changed routines for many Mito families. Camp programs, such as those supported by the Matthew Harty Camper Fund, 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
- [Medical Homes](https://www.mitoaction.org/resources/medical-homes/) - 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
- [Molecular Diagnostic Testing for Mitochondrial Disorders](https://www.mitoaction.org/resources/molecular-diagnostic-testing-for-mitochondrial-disorders/) - 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
- [Getting Through the Day with Mito](https://www.mitoaction.org/resources/getting-through-the-day-with-mito/) - 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
- [Exercise and Nutrition Therapy for Mitochondrial Disease](https://www.mitoaction.org/resources/exercise-and-nutrition-therapy-for-mitochondrial-disease/) - 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
- [Stealth BioTherapeutics MMPOWER Update](https://www.mitoaction.org/resources/stealth-biotherapeutics-mmpower-update/) - 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
- [2017 Mito Town Meeting](https://www.mitoaction.org/resources/2017-mito-town-meeting/) - 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!
- [Mitochondria and MitoQ: A Research Update](https://www.mitoaction.org/resources/mitochondria-and-mitoq-a-research-update/) - 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
- [Mitochondrial Replacement Therapy](https://www.mitoaction.org/resources/mitochondrial-replacement-therapy-2/) - 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
- [BioElectron Update](https://www.mitoaction.org/resources/bioelectron-update/) - 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
- [Stealth BioTherapeutics MMPOWER-2  and REPOWER Study Update](https://www.mitoaction.org/resources/stealth-biotherapeutics-mmpower-2-and-repower-study-update/) - 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
- [How Enteric Microbiome Mitochondrial Function](https://www.mitoaction.org/resources/how-enteric-microbiome-mitochondrial-function/) - 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
- [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/) - 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
- [Medical Care: What Approach Works for You?](https://www.mitoaction.org/resources/medical-care-what-approach-works-for-you/) - 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)
- [2018 Mito Town Meeting](https://www.mitoaction.org/resources/2018-mito-town-meeting/) - 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
- [Is it Really Mito?](https://www.mitoaction.org/resources/is-it-really-mito/) - 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.
- [The Evolution of Leigh Syndrome](https://www.mitoaction.org/resources/dr-koenig-the-evolution-of-leigh-syndrome/) - Talking points include: Understanding the history of Leigh Syndrome Understanding Leigh Syndrome Current treatment
- [Spectrum Needs, a New Comprehensive Nutritional Therapy for Autism, Functional Conditions and Mitochondrial Disease](https://www.mitoaction.org/resources/dr-boles-spectrum-needs/) - 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
- [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/) - 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
- [Mitochondrial Medicine Society (MMS) Standards of Care Review & Updates](https://www.mitoaction.org/resources/dr-amel-karaa-mms-standards-of-care/) - 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.
- [Mitochondrial Disease and the Immune System](https://www.mitoaction.org/resources/dr-peter-mcguire-mito-immune-systems/) - 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
- [Mitochondrial Defects May Lead to Autism](https://www.mitoaction.org/resources/wallace030521/) - 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.
- [Genetics, Genomics & Mitochondrial DNA Testing](https://www.mitoaction.org/resources/genetics-genomics-mitochondrial-dna-testing/) - 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. 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
- [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/) - 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
- [Get Connected with MyMito App](https://www.mitoaction.org/resources/get-connected-with-mitoaction-mobile/) - 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.
- [Mitochondrial Genetics and Diseases](https://www.mitoaction.org/resources/dr-douglas-wallace-discusses-mitochondrial-genetics-and-diseases/) - 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
- [Mitochondrial Medicine Society Publications](https://www.mitoaction.org/resources/mitochondrial-medicine-society-publication/) - 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
- [Helping Your Child Become Independent](https://www.mitoaction.org/resources/helping-your-child-become-independent/) - 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
- [Clinicians' Panel Discussion #2](https://www.mitoaction.org/resources/clinicians-panel-discussion-2/) - Dr. Jerry Vockley, Marie Norris, Dr. Peter McGuire, Dr. Georgianne Arnold, Pamela Lane take questions from the International Metabolic Conference attendees.
- [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/) - Learn about managing your fat intake, fasting and helping your FAOD'er find balance.
- [HITT Exercises and Stretching for all FOADs](https://www.mitoaction.org/resources/hitt-exercises-and-stretching-for-all-foads/) - Dr. Pamela Tucker, PT, DPT from the Institute of Human Performance shares the most effective exercise and stretching without stressing your body.
- [Ultragenyx Pharmaceutical Community Update](https://www.mitoaction.org/resources/ultragenyx-pharmaceutical-community-update/) - Laura PIsani-Bentancourt, MD provides an update on initiatives at Ultragenyx including patient education, clinical trials and studies for the FAOD community.
- [How to Approach Sports and Exercise with an FOAD](https://www.mitoaction.org/resources/how-to-approach-sports-and-exercise-with-an-foad/) - Dr. Melanie Gillingham shares how to successfully participate in sports and exercise when you have an FAOD.
- [Transitioning from Pediatric to Adult Care](https://www.mitoaction.org/resources/transitioning-from-pediatric-to-adult-care/) - 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
- [The Journey of a Study - Beth & Luke Folcher](https://www.mitoaction.org/resources/the-journey-of-a-study-beth-luke-folcher/) - Mom Beth and son Luke share their experience participating in a clinical trial.
- [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/) - Pamela Lane discusses ways to ensure the all members of your loved one's family care team are supported throughout their care journey.
- [Pandemic Lessons Learned from the Mitochondrial Disease Community](https://www.mitoaction.org/resources/pandemic-lessons-learned-from-the-mitochondrial-disease-community/) - Pandemic Lessons Learned from the Mitochondrial Disease Community.
- [Inborn Errors of Metabolism and Puberty](https://www.mitoaction.org/resources/inborn-errors-of-metabolism-and-puberty/) - Dr. Jerry Vockley takes a deep dive into the effects of having a metabolic condition and it's impact on puberty.
- [A Physician's Perspective on Leigh Syndrome](https://www.mitoaction.org/resources/leighsyndrome/) - 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!
- [Mito Basics: Genetics, Testing & Financial](https://www.mitoaction.org/resources/genedx2020/) - Join MitoAction and David Keane from GeneDX for our December Monthly Mito Expert Series presentation titled: Mito Genetic Basics: Disease, Testing and Financial.
- [Clinician's Panel Discussion #1](https://www.mitoaction.org/resources/clinicians-panel-discussion-1/) - Dr. Melanie Gillingham, Dr. Eric Goetzman, Dr. Pamela Tucker answer questions from International Metabolic Conference attendees.
- [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/) - Dr. Jerry Vockley discusses how to navigate when you may have multiple diagnosis or a complex care situation.
- [Hear Your Song Patient Song](https://www.mitoaction.org/resources/hear-your-song-patient-song/) - Hear Your Song joined us for the 2022 IMC and children wrote their own song.
- [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/) - 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.
- [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/)
- [Viral Infections & Mitochondrial Disease - Dr. Peter McGuire](https://www.mitoaction.org/resources/viral-infections-mitochondrial-disease-dr-peter-mcguire/)
- [Sunday Welcome - Kira Mann](https://www.mitoaction.org/resources/sunday-welcome-kira-mann/)
- [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/)
- [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/)
- [Yoga for the Whole Family - Marcella Longlade](https://www.mitoaction.org/resources/yoga-for-the-whole-family-marcella-longlade/)
- [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/)
- [Physical Therapy & Rhabdomyolysis - Tobi Schaap, PT, DPT, OCS](https://www.mitoaction.org/resources/physical-therapy-rhabdomyolysis-tobi-schaap-pt-dpt-ocs/)
- [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/)
- [Understanding Rhabdomyolysis - Dr. Mark Korson](https://www.mitoaction.org/resources/understanding-rhabdomyolysis-dr-mark-korson/)
- [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/)
- [2021 MitoAction International Metabolic Conference - Saturday Welcome - Kira Mann](https://www.mitoaction.org/resources/2021-mitoaction-international-metabolic-conference-saturday-welcome-kira-mann/)
- [2021 MitoAction International Metabolic Conference - Young Adult Panel](https://www.mitoaction.org/resources/2021-mitoaction-international-metabolic-conference-young-adult-panel/) - Young adults diagnosed with a Fatty Acid Oxidation Disorder share their experiences gaining independence and taking charge of their care.
- [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/)
- [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/)
- [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/)
- [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/)
- [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/)
- [Community Update: Fatty Acid Oxidation Treatments & Growing Options](https://www.mitoaction.org/resources/community-update-fatty-acid-oxidation-treatments-growing-options/) - Dr. Jerry Vockley provides updates on the latest in therapy development for the FAOD community at the 2022 International Metabolic Conference.
- [Charting the Future -- What PDCD Teaches Us About Mitochondrial Disease](https://www.mitoaction.org/resources/pdcd/) - 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!
- [Meet Devin the Genetic Counselor and Mito Patient](https://www.mitoaction.org/resources/meet-devin-the-genetic-counselor-and-mito-patient/) - ENERGY IN ACTION - EPISODE 063Meet 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
- [Lovevery - Purposeful Play Customized for all Abilities](https://www.mitoaction.org/resources/lovevery-purposeful-play-customized-for-all-abilities/) - ENERGY IN ACTION - EPISODE 064Lovevery - 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
- [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 065Tara 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,
- [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/) - ENERGY IN ACTION - EPISODE 067What'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
- [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/) - PARENTS AS RARE - EPISODE 068Special 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
- [Granting Wishes One Trip at a Time](https://www.mitoaction.org/resources/granting-wishes-one-trip-at-a-time/) - ENERGY IN ACTION - EPISODE 069Give 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
- [Meeting My MELAS Mito Friend](https://www.mitoaction.org/resources/meeting-my-melas-mito-friend/) - PARENTS AS RARE - EPISODE 070Meeting 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
- [INFORM & FAOD Community Update](https://www.mitoaction.org/resources/inform-faod-community-update/)
- [Infection, Immunity and FAOD](https://www.mitoaction.org/resources/infection-immunity-and-faod/)
- [Weekly Support Calls](https://www.mitoaction.org/resources/friday-support-calls/)
- [MyMito App App](https://www.mitoaction.org/resources/mitoaction-mobile-app/)
- [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/) - “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.

## Products

- [Pom-Pom MitoAction Beanie](https://www.mitoaction.org/product/mitoaction-pom-pom-beanie/) - 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
- [Liney's Lovies Black Glossy Mug](https://www.mitoaction.org/product/lineys-lovies-black-glossy-mug/) - 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
- [Liney's Lovies Unisex Long Sleeve Tee](https://www.mitoaction.org/product/lineys-lovies-unisex-long-sleeve-tee/) - 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
- [Liney's Lovies Unisex midweight hoodie](https://www.mitoaction.org/product/lineys-lovies-unisex-midweight-hoodie/) - 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
- [Liney's Lovies Unisex t-shirt](https://www.mitoaction.org/product/unisex-t-shirt/) - 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
- [Cuffed MitoAction Beanie](https://www.mitoaction.org/product/cuffed-mitoaction-beanie/) - 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
- [Embroidered MitoAction Backpack](https://www.mitoaction.org/product/embroidered-mitoaction-backpack-2/) - 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 •
- [MitoAction Mug with Color Inside](https://www.mitoaction.org/product/mitoaction-mug-with-color-inside-2/) - 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) •
- [MitoAction Socks](https://www.mitoaction.org/product/mitoaction-socks-2/) - 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
- [Unisex Tie-Dye MitoAction Hoodie](https://www.mitoaction.org/product/unisex-tie-dye-mitoaction-hoodie/) - 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
- [Distressed MitoAction "Dad" Hat](https://www.mitoaction.org/product/distressed-mitoaction-dad-hat/) - 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
- [Cuffed MitoAction Tie Dye Beanie](https://www.mitoaction.org/product/cuffed-mitoaction-tie-dye-beanie/) - 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
- [MitoAction Tie Dye Hat](https://www.mitoaction.org/product/mitoaction-tie-dye-hat/) - 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)
- [Unisex Zip MitoAction Hoodie](https://www.mitoaction.org/product/unisex-zip-mitoaction-hoodie/) - 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
- [Unisex MitoAction Hoodie](https://www.mitoaction.org/product/unisex-mitoaction-hoodie/) - 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 •
- [MitoAction Quarter Zip Pullover](https://www.mitoaction.org/product/mitoaction-quarter-zip-pullover/) - 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
- [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/) - 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
- [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/) - 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%
- [Unisex Embroidered Champion Packable MitoAction Jacket](https://www.mitoaction.org/product/unisex-embroidered-champion-packable-mitoaction-jacket/) - 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
- [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/) - 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%
- [Unisex FAOD Hoodie](https://www.mitoaction.org/product/unisex-faod-hoodie/) - 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 •
- [Youth Short Sleeve FAOD T-Shirt](https://www.mitoaction.org/product/youth-short-sleeve-faod-t-shirt/) - 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 •
- [Short-Sleeve Unisex FAOD T-Shirt](https://www.mitoaction.org/product/short-sleeve-unisex-faod-t-shirt/) - 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%
- [Short-Sleeve Mito Support Squad Unisex T-Shirt](https://www.mitoaction.org/product/mito-support-squad-short-sleeve-unisex-t-shirt/) - 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%
- [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/) - 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%
- [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/) - 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%
- [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/) - 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%
- [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/) - 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%
- [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/) - 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%
- [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/) - 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%
- [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/) - 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%
- [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/) - 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%
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [Engraved Silver Bar Chain Mito Warrior Bracelet](https://www.mitoaction.org/product/engraved-silver-bar-chain-mito-warrior-bracelet/) - 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. •
- [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/) - 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
- [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/) - 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
- [Short-Sleeve Unisex Hope T-Shirt](https://www.mitoaction.org/product/short-sleeve-unisex-hope-t-shirt/) - 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
- [Youth Short Sleeve Leopard Peace Love Cure T-Shirt](https://www.mitoaction.org/product/youth-short-sleeve-leopard-peace-love-cure-t-shirt/) - 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
- [Unisex Blue Peace Love Cure Hoodie](https://www.mitoaction.org/product/unisex-blue-peace-love-cure-hoodie/) - 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
- [Unisex MitoAction Joggers](https://www.mitoaction.org/product/unisex-mitoaction-joggers/) - 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) • 1x1 rib cuffs with spandex for stretch and recovery • Elastic waistband with external drawcord • Contrast
- [Unisex MitoAction Piped Fleece Jacket](https://www.mitoaction.org/product/unisex-mitoaction-piped-fleece-jacket/) - 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
- [Caroline's Team by Korey Lesko 2023 Unisex T-Shirt](https://www.mitoaction.org/product/carolines-team-by-korey-lesko-2023-unisex-t-shirt/) - 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
- [Team MitoAction Ladies’ Muscle Tank](https://www.mitoaction.org/product/team-mitoaction-ladies-muscle-tank/) - 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
- [Team MitoAction Unisex Tank Top](https://www.mitoaction.org/product/team-mitoaction-unisex-tank-top/) - 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
- [Caroline's Team by Korey Lesko 2023 Unisex Hoodie](https://www.mitoaction.org/product/carolines-team-by-korey-lesko-2023-unisex-hoodie/) - 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

## Venues

- [Detroit Country Day School](https://www.mitoaction.org/venue/detroit-country-day-school__trashed/)
- [Franklin Park Zoo](https://www.mitoaction.org/venue/franklin-park-zoo/)
- [North Andover Country Club](https://www.mitoaction.org/venue/north-andover-country-club/)
- [Wills Park - Wacky World Playground](https://www.mitoaction.org/venue/wills-park-wacky-world-playground/)
- [North Andover Youth Center](https://www.mitoaction.org/venue/north-andover-youth-center/)
- [DCR's Mother Rest](https://www.mitoaction.org/venue/dcrs-mother-rest/)
- [Genesee Valley Park](https://www.mitoaction.org/venue/genesee-valley-park/)
- [Green Lake Park](https://www.mitoaction.org/venue/green-lake-park/)
- [Children's Hospital of Pittsburgh](https://www.mitoaction.org/venue/childrens-hospital-of-pittsburgh/)
- [Hilton Pasadena](https://www.mitoaction.org/venue/hilton-pasadena/)
- [Maple Grove Library](https://www.mitoaction.org/venue/maple-grove-library/)
- [Leawood Pioneer Library](https://www.mitoaction.org/venue/leawood-pioneer-library/)
- [Uptime Esports](https://www.mitoaction.org/venue/uptime-esports/)
- [Wyndham Pittsburgh University Center](https://www.mitoaction.org/venue/wyndham-pittsburgh-university-center/)
- [Catholic University of America - McGivney Hall](https://www.mitoaction.org/venue/catholic-university-of-america-mcgivney-hall/)
- [Babson College](https://www.mitoaction.org/venue/babson-college/)
- [Green Lakes State Park](https://www.mitoaction.org/venue/green-lakes-state-park/)

## Organizers

- [PTC Therapeutics](https://www.mitoaction.org/organizer/ptc-therapeutics/)
- [Ultragenyx Pharmaceutical](https://www.mitoaction.org/organizer/ultragenyx-pharmaceutical/)
- [](https://www.mitoaction.org/organizer/4206/)
- [Paint With Me Boston](https://www.mitoaction.org/organizer/paint-with-me-boston/)
- [INFORM](https://www.mitoaction.org/organizer/inform/)
- [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/)

## Events

- [Teen Breakout Session](https://www.mitoaction.org/mitoaction-events/teen-breakout-session/) - 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 Register for the IMC Conference
- [Welcome](https://www.mitoaction.org/mitoaction-events/welcome/) - Learn More About IMC Register for the IMC Conference
- [Ultragenyx Study Updates and Initiatives](https://www.mitoaction.org/mitoaction-events/ultragenyx-study-updates-and-initiatives/) - 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
- [Understanding LC-FAOD Guidelines](https://www.mitoaction.org/mitoaction-events/understanding-faod-guidelines-created-by-inform/) - 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
- [2026 Energy Walk Boston, MA](https://www.mitoaction.org/mitoaction-events/2026-energy-walk-boston-ma/) - 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 Boston220 William T Morrissey BlvdBoston, MA 02125 Learn More Register
- [Energy Walk Boston](https://www.mitoaction.org/mitoaction-events/energy-walk-boston-2/) - 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,
- [Welcome](https://www.mitoaction.org/mitoaction-events/welcome-2/) - Learn More About IMC Register for the IMC Conference
- [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/) - 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
- [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/) - 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
- [From Supplements to Weight Loss –  Maximizing Your Nutrition Health](https://www.mitoaction.org/mitoaction-events/from-supplements-to-weight-loss-maximizing-your-nutrition-health/) - 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
- [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/) - 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
- [Break](https://www.mitoaction.org/mitoaction-events/break-3/) - Learn More About IMC Register for the IMC Conference
- [Clinician Panel](https://www.mitoaction.org/mitoaction-events/clinician-panel-2/) - Bring your questions to ask during the Q&A session, or feel free to submit them ahead of time to Stephanie Harry at sharry@mitoaction.org. Learn More About IMC Register for the IMC Conference
- [Closing](https://www.mitoaction.org/mitoaction-events/closing-2/) - Learn More About IMC Register for the IMC Conference
- [IMC 2026](https://www.mitoaction.org/mitoaction-events/imc-2025-2/) - 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, MitoAction assembles leading experts to present to patients, families, caregivers, and clinicians about disease management, clinical trials,
- [IMC 2025](https://www.mitoaction.org/mitoaction-events/imc-2025-4/)
- [Closing](https://www.mitoaction.org/mitoaction-events/closing/) - Learn More About IMC Register for the IMC Conference
- [Break](https://www.mitoaction.org/mitoaction-events/break-2/) - Learn More About IMC Register for the IMC Conference
- [Patient/Family Panel](https://www.mitoaction.org/mitoaction-events/patient-family-panel/) - 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 Register for
- [Emerging Genetic Therapies for FAODs](https://www.mitoaction.org/mitoaction-events/emerging-genetic-therapies-for-faods/) - 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 Register for the IMC Conference
- [Break](https://www.mitoaction.org/mitoaction-events/break/) - Learn More About IMC Register for the IMC Conference
- [FAOD Updates](https://www.mitoaction.org/mitoaction-events/faod-updates/) - Dr. Vockley will share current treatments and potential therapies in the FAOD community, with our yearly, "FAOD Updates!" Learn More About IMC Register for the IMC Conference
- [Lunch Break](https://www.mitoaction.org/mitoaction-events/lunch-break/) - Learn More About IMC Register for the IMC Conference
- [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/) - 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
- [Roundtable Discussion: Navigating Romantic Relationships with an FAOD](https://www.mitoaction.org/mitoaction-events/roundtable-discussion-navigating-romantic-relationships-with-an-fao/) - 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!
- [Roundtable Discussion: Navigating School Life](https://www.mitoaction.org/mitoaction-events/roundtable-discussion-navigating-school-life/) - 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 Register for the IMC Conference
- [Roundtable Discussion: "International Experience"](https://www.mitoaction.org/mitoaction-events/roundtable-discussion-international-experience/) - 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?
- [Roundtable Discussion: All Things MCADD](https://www.mitoaction.org/mitoaction-events/roundtable-discussion-all-things-mcadd/) - 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
- [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/) - 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 Register for the IMC Conference
- [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/) - 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
- [You Are Not Alone: Undiagnosed Community Roundtable](https://www.mitoaction.org/mitoaction-events/you-are-not-alone-undiagnosed-community-roundtable/) - 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 Register for the IMC Conference
- [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/) - 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 Register for the IMC Conference
- [CANCELED Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-26/) - 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
- [MitoArtisan's Playtime - Course 9](https://www.mitoaction.org/mitoaction-events/mitoartisans-playtime-course-9/) - This workshop offers a safe space to express our feelings through words, enabling us to process trauma, accept difficult news, and rebuild resilience.
- [Expert Series: Understanding the potential of a "CPK Meter"](https://www.mitoaction.org/mitoaction-events/expert-series-understanding-the-potential-of-a-cpk-meter/) - 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.
- [2026 Energy Walk Alvin, TX](https://www.mitoaction.org/mitoaction-events/2026-energy-walk-alvin-tx/) - 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 ChurchVictory Ln #1407Alvin, TX 77511 Learn More Register
- [2026 Energy Walk Syracuse, NY](https://www.mitoaction.org/mitoaction-events/2026-energy-walk-syracuse-ny/) - 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 Park7900 Green Lakes RdFayetteville, NY 13066 Learn More Register
- [2026 Energy Walk Rochester, NY](https://www.mitoaction.org/mitoaction-events/2026-energy-walk-rochester-ny/) - 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 Park975 English RdRochester, NY 14626 Learn More Register
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-22/) - 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
- [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/) - 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.
- [MitoPlaytime: Smoothie Date!](https://www.mitoaction.org/mitoaction-events/mitoplaytime-smoothie-date-2/) - Join MitoChampions Debbie and Sue as they take a playful look at smoothie making!! Bring your own smoothie and sip while they explore light-hearted topics!
- [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/) - In this Expert Series with Dr. Ganetzky, we will talk about what lactic acid is supposed to do and how that gets dysregulated in mitochondrial disease.
- [MELAS Support Call](https://www.mitoaction.org/mitoaction-events/melas-support-call-2/) - 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
- [MELAS Support Call](https://www.mitoaction.org/mitoaction-events/melas-support-call-3/) - 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
- [MELAS Support Call](https://www.mitoaction.org/mitoaction-events/melas-support-call-4/) - 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
- [MELAS Support Call](https://www.mitoaction.org/mitoaction-events/melas-support-call-5/) - 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
- [MELAS Support Call](https://www.mitoaction.org/mitoaction-events/melas-support-call-6/) - 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
- [MELAS Support Call](https://www.mitoaction.org/mitoaction-events/melas-support-call-7/) - 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
- [MELAS Support Call](https://www.mitoaction.org/mitoaction-events/melas-support-call-8/) - 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
- [MELAS Support Call](https://www.mitoaction.org/mitoaction-events/melas-support-call-9/) - 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
- [MELAS Support Call](https://www.mitoaction.org/mitoaction-events/melas-support-call-10/) - 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
- [FAOD Exploring The Younger Years](https://www.mitoaction.org/mitoaction-events/faod-exploring-the-younger-years-2/) - 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
- [FAOD Exploring The Younger Years](https://www.mitoaction.org/mitoaction-events/faod-exploring-the-younger-years-3/) - 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
- [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/) - This presentation will explain the basic nutrition needs essential for overall health in individuals with mitochondrial disease.
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-15/) - 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
- [Expert Series: Direct to Consumer Genetic Testing 101](https://www.mitoaction.org/mitoaction-events/expert-series-direct-to-consumer-genetic-testing-101/) - Join this Expert Series to hear genetic counselor Devin Shuman, CGC, talk about direct-to-consumer testing (DTC).
- [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/) - In partnership with Little Hercules Foundation, this Expert Series explores insurance basics, claims, coding, prior authorizations, and understanding your EOB.
- [13th Annual Matthew Harty Mito Classic](https://www.mitoaction.org/mitoaction-events/13th-annual-matthew-harty-mito-classic/) - 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 Register
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-13/) - 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
- [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/) - Dr. Darbari will provide an overview of gastrointestinal motility, explore complexities patients face in diagnosis, and discuss current treatment strategies.
- [Sandra K. Russell Derby Day Benefit for Mito](https://www.mitoaction.org/mitoaction-events/sandra-k-russell-derby-day-benefit-for-mito-4/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-11/) - 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
- [Expert Series: Neuropathy and Disorders of Mitochondrial Dysfunction](https://www.mitoaction.org/mitoaction-events/expert-series-neuropathy-and-disorders-of-mitochondrial-dysfunction/) - Dr. Amy Goldstein will join MitoAction to review the neurological system and the differences between types of neuropathies.
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-9/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-44/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-43/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-41/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-42/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-45/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-40/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-37/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-38/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-39/) - 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
- [World Rare Disease Day](https://www.mitoaction.org/mitoaction-events/world-rare-disease-day/) - "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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-36/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-24/) - 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
- [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call-14/) - 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 We are
- [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call-13/) - 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 We are
- [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call-12/) - 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 We are
- [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call-11/) - 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 We are
- [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call-10/) - 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 We are
- [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call-9/) - 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 We are
- [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call-8/) - 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 We are
- [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call-7/) - 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 We are
- [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call-6/) - 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 We are
- [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call-5/) - 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 We are
- [MELAS Support Call](https://www.mitoaction.org/mitoaction-events/melas-support-call/) - A space where caregivers, family, and patients with MELAS can come and share their wisdom, ask questions, and offer encouragement.
- [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call-4/) - 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 We are
- [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call-3/) - 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 We are
- [MELAS EL-PFDD Meeting with MitoAction](https://www.mitoaction.org/mitoaction-events/pfdd-meeting/) - 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
- [Mito Town Meeting 2026](https://www.mitoaction.org/mitoaction-events/mito-town-meeting-2026-2/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-35/) - 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
- [MitoArtisan's Playtime - Course 8](https://www.mitoaction.org/mitoaction-events/mitoartisans-playtime-course-8/) - This workshop offers a safe space to express our feelings through words, enabling us to process trauma, accept difficult news, and rebuild resilience.
- [FAOD Support Call](https://www.mitoaction.org/mitoaction-events/faod-support-call/) - 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
- [Expert Series: Understanding TK2d and the KYGEVVI Approval](https://www.mitoaction.org/mitoaction-events/expert-series-understanding-tk2d-and-the-kygevvi-approval/) - Join us for a webinar exploring KYGEVVI™, the first FDA-approved treatment for thymidine kinase 2 deficiency (TK2d) in adults and pediatric patients.
- [Clinical Trials Day](https://www.mitoaction.org/mitoaction-events/clinical-trials-day-3/)
- [INFORM Conference 2026](https://www.mitoaction.org/mitoaction-events/inform-conference-2026-2/)
- [Mitochondrial Disease Awareness Week](https://www.mitoaction.org/mitoaction-events/mitochondrial-disease-awareness-week-5/)
- [LHON Awareness Day 2025](https://www.mitoaction.org/mitoaction-events/lhon-awareness-day-2025-3/)
- [ACMG Toronto](https://www.mitoaction.org/mitoaction-events/acmg-toronto-2/)
- [International Epilepsy Day](https://www.mitoaction.org/mitoaction-events/international-epilepsy-day/)
- [International Epilepsy Day](https://www.mitoaction.org/mitoaction-events/international-epilepsy-day-3/)
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-34/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-33/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-31/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-32/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-29/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-30/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-28/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-26/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-27/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-25/) - 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
- [FAOD Support Call](https://www.mitoaction.org/mitoaction-events/faod-support-call-12/) - 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
- [FAOD Support Call](https://www.mitoaction.org/mitoaction-events/faod-support-call-11/) - 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
- [FAOD Support Call](https://www.mitoaction.org/mitoaction-events/faod-support-call-10/) - 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
- [FAOD Support Call](https://www.mitoaction.org/mitoaction-events/faod-support-call-9/) - 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
- [FAOD Support Call](https://www.mitoaction.org/mitoaction-events/faod-support-call-7/) - 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
- [FAOD Support Call](https://www.mitoaction.org/mitoaction-events/faod-support-call-8/) - 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
- [FAOD Support Call](https://www.mitoaction.org/mitoaction-events/faod-support-call-6/) - 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
- [FAOD Support Call](https://www.mitoaction.org/mitoaction-events/faod-support-call-4/) - 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
- [FAOD Support Call](https://www.mitoaction.org/mitoaction-events/faod-support-call-5/) - 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
- [FAOD Support Call](https://www.mitoaction.org/mitoaction-events/faod-support-call-2/) - 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
- [FAOD Support Call](https://www.mitoaction.org/mitoaction-events/faod-support-call-3/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-42/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-41/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-39/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-40/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-38/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-36/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-37/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-35/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-33/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-34/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-32/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-31/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-50/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-49/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-48/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-47/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-46/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-45/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-44/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-43/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-42/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-41/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-40/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-38/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-39/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-37/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-35/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-36/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-33/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-34/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-32/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-30/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-31/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-29/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-28/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-27/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-25/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-24/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-23/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-21/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-20/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-18/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-19/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-17/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-16/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-14/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-12/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-10/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-8/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-7/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-5/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-6/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-4/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-3/) - 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
- [Mito Weekly Support Call](https://www.mitoaction.org/mitoaction-events/mito-weekly-support-call-2/) - 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
- [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-23/) - 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
- [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-24/) - 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
- [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-22/) - 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
- [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-20/) - 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
- [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-21/) - 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
- [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-18/) - 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
- [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-19/) - 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
- [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-16/) - 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
- [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-17/) - 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
- [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-15/) - 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
- [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-13/) - 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
- [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-14/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-19/) - 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
- [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-17/) - 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
- [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-18/) - 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
- [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-15/) - 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
- [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-16/) - 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
- [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-13/) - 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
- [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-12/) - 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
- [Barth Syndrome Awareness Day](https://www.mitoaction.org/mitoaction-events/barth-syndrome-awareness-day-2/)
- [LHON Awareness Day 2026](https://www.mitoaction.org/mitoaction-events/lhon-awareness-day-2026/)
- [Mitochondrial Disease Awareness Week](https://www.mitoaction.org/mitoaction-events/mitochondrial-disease-awareness-week-3/)
- [TK2D Awareness Day](https://www.mitoaction.org/mitoaction-events/tk2d-awareness-day-4/)
- [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call-2/) - Join MitoAction once a month for our virtual POLG Support Call. This special space is for patients and caregivers in the POLG community.
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-114/) - 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
- [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/) - This presentation aims to clarify how these two testing options are used and how clinics use these options to determine a diagnosis of mitochondrial disease.
- [2025 Energy Walk - Riverside](https://www.mitoaction.org/mitoaction-events/2025-energy-walk-riverside/) - Register Learn More
- [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-11/) - 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
- [POLG Support Call](https://www.mitoaction.org/mitoaction-events/polg-support-call/) - Join MitoAction once a month for our virtual POLG Support Call. This special space is for POLG patients and caregivers to share and support each other
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-110/) - 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
- [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/) - Dr. Jacoby and Dr. Sher discuss the promises, challenges, and clinical outcomes of this therapy. This session offers valuable insights for those interested in cutting-edge mito therapies.
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-21-copy-copy/) - 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
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-21-copy/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-30-copy/) - 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
- [FAOD Support: Exploring the Younger Years](https://www.mitoaction.org/mitoaction-events/faod-support-exploring-the-younger-years-5-copy-2/) - 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
- [MitoArtisan's Playtime - Course 7](https://www.mitoaction.org/mitoaction-events/mitoartisans-playtime-course-7/) - Fall brings a special kind of beauty! This course will seek to capture that beauty in a simple way, using a few colored pencils.
- [MitoPlaytime: Smoothie Date!](https://www.mitoaction.org/mitoaction-events/mitoplaytime-smoothie-date/) - 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
- [Open Mito Mic & Art Show](https://www.mitoaction.org/mitoaction-events/open-mito-mic-art-show-2/) - A call to ALL visual artists, poets, comedians, singers, …and creators in our Mito Community!! MitoAction’s Annual Mito Mic and Art Show will be on Nov 16!
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-21/) - 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
- [FAOD Support: Exploring the Younger Years](https://www.mitoaction.org/mitoaction-events/faod-support-exploring-the-younger-years-5/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-30/) - 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
- [Mitochondrial Disease Awareness Week](https://www.mitoaction.org/mitoaction-events/mitochondrial-disease-awareness-week-2/)
- [MitoPlaytime: Pictionary!](https://www.mitoaction.org/mitoaction-events/mitoplaytime-pictionary/) - 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
- [Light Up For Mito](https://www.mitoaction.org/mitoaction-events/light-up-for-mito/) - On Saturday, September 20th, landmarks, buildings, homes, and monuments around the world lit up green to shine a light on mitochondrial diseases.
- [LHON Awareness Day & Webinar](https://www.mitoaction.org/mitoaction-events/lhon-awareness-day-2025/) - 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
- [Light a Light](https://www.mitoaction.org/mitoaction-events/light-a-light/) - Each year during the Wednesday of Awareness Week, we remember those who have lost the battle with mito and ask that friends and family “Light a Light” in their memory.
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-105/) - 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
- [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/) - This discussion will review different approaches towards successful respiratory support for patients with mitochondrial disease.
- [TK2D Awareness Day](https://www.mitoaction.org/mitoaction-events/tk2d-awareness-day-3/) - 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 to
- [2025 Energy Walk & 5k - Syracuse](https://www.mitoaction.org/mitoaction-events/2025-energy-walk-5k-syracuse/) - Register Learn More
- [MitoArtisan's Playtime - Course 6](https://www.mitoaction.org/mitoaction-events/mitoartisans-playtime-course-6/) - We encourage you to consider sharing love with those in our Mito Community by making a heart! There is an ongoing need for more hearts in the Mito community.
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-101/) - 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
- [Seeing Beyond the Diagnosis: Life with Mito](https://www.mitoaction.org/mitoaction-events/seeing-beyond-the-diagnosis-life-with-mito/) - Join MitoAction September 15th at 7pm EST for a unique experience that will bring you inside understanding into the patient diagnostic and treatment journey.
- [FAOD Support: Exploring the Younger Years](https://www.mitoaction.org/mitoaction-events/faod-support-exploring-the-younger-years-4/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-29/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-117/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-28/) - 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
- [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/)
- [Growing Up: Meeting New Challenges in Reproductive Health from Puberty and Beyond](https://www.mitoaction.org/mitoaction-events/puberty-the-highs-and-lows/)
- [Kicking It Together: Explore Kickboxing and Stretching with Pam](https://www.mitoaction.org/mitoaction-events/yoga/)
- [Closed for the 4th of July!](https://www.mitoaction.org/mitoaction-events/closed-for-the-4th-of-july/) - 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/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-27/) - 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
- [MitoArtisan's Playtime - Course 5](https://www.mitoaction.org/mitoaction-events/mitoartisans-playtime-course-5/) - 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.
- [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/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-90/) - 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
- [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/) - Join Dr. Rossan Sanchez for a discussion on the scientific, clinical, and emotional challenges faced by individuals in the mitochondrial disease community.
- [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/)
- [Aging with an Fatty Acid Oxidation Disorder](https://www.mitoaction.org/mitoaction-events/aging-with-an-faod/)
- [Clinician Panel](https://www.mitoaction.org/mitoaction-events/clinician-panel/)
- [FAOD Guidelines](https://www.mitoaction.org/mitoaction-events/faod-guidelines/)
- [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/) - Join MitoAction, Barth Syndrome Foundation, and Stealth BioTherapeutics as we navigate the FDA's most recent update on the application for elamipretide, a crucial treatment for the Barth syndrome community.
- [Approaching Sports and Exercise](https://www.mitoaction.org/mitoaction-events/approaching-sports-and-exercise/)
- [Puberty: The Highs and Lows](https://www.mitoaction.org/mitoaction-events/puberty-the-highs-and-lows-2/)
- [FAOD Case Studies: Patient and Clinician Collaborative Problem Solving](https://www.mitoaction.org/mitoaction-events/faod-case-studies-patient-and-clinician-collaborative-problem-solving/)
- [FAOD Support: Exploring the Younger Years](https://www.mitoaction.org/mitoaction-events/faod-support-exploring-the-younger-years-3/) - 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
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-18/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-86/) - 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
- [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/) - We will discuss the link between bulbar/upper airway function, respiratory muscle weakness, airway clearance, and how to optimize clearance and lung health.
- [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/) - Dr. Chatfield will discuss cardiomyopathy and LC-FAODs, share current research, the direction of which it is heading, and treatment strategies.
- [Expert Series: Serial Casting and Toe Walking](https://www.mitoaction.org/mitoaction-events/expert-series-serial-casting-and-toe-walking/) - Join Pamela Tucker as she explores toe walking 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.
- [Celebrate Mother's Day](https://www.mitoaction.org/mitoaction-events/celebrate-mothers-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
- [Celebrate Father's Day](https://www.mitoaction.org/mitoaction-events/celebrate-fathers-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
- [FAOD Support: Exploring the Younger Years](https://www.mitoaction.org/mitoaction-events/faod-support-exploring-the-younger-years-2/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-116/) - 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
- [Natural History Study Update](https://www.mitoaction.org/mitoaction-events/natural-history-study-update/)
- [Afternoon Registration Begins](https://www.mitoaction.org/mitoaction-events/afternoon-registration-begins/)
- [Welcome to IMC 2025](https://www.mitoaction.org/mitoaction-events/welcome-to-imc-2025/)
- [Understanding All FAODs](https://www.mitoaction.org/mitoaction-events/understanding-all-faods/)
- [Breaking the Ice: FAOD Style](https://www.mitoaction.org/mitoaction-events/breaking-the-ice-faod-style/)
- [FAOD Therapy Updates](https://www.mitoaction.org/mitoaction-events/faod-therapy-updates/)
- [Understanding the Clinical Trial Process](https://www.mitoaction.org/mitoaction-events/understanding-the-clinical-trial-process/)
- [Sponsor Update](https://www.mitoaction.org/mitoaction-events/sponsor-update/)
- [FAOD Fun Night: Dinner, Kickball and Snowcones!](https://www.mitoaction.org/mitoaction-events/faod-fun-night-dinner-kickball-and-snowcones/)
- [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/)
- [Morning Report](https://www.mitoaction.org/mitoaction-events/morning-report-2/)
- [FAOD Cooking Tips and Tricks](https://www.mitoaction.org/mitoaction-events/faod-cooking-tips-and-tricks/)
- [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/)
- [Lunch](https://www.mitoaction.org/mitoaction-events/lunch-2/)
- [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/)
- [Creative Expressions: Practicing Self-Care through Visual Art](https://www.mitoaction.org/mitoaction-events/creative-expressions-practicing-self-care-through-visual-art/)
- [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/)
- [Guy Talk: Men's Support Time](https://www.mitoaction.org/mitoaction-events/guy-talk-mens-support-time/)
- [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/)
- [Doors Open / Continental Breakfast Available at Country Day School](https://www.mitoaction.org/mitoaction-events/doors-open-continental-breakfast-available-at-country-day-school/)
- [Morning Report](https://www.mitoaction.org/mitoaction-events/morning-report/)
- [Understanding Inflammation](https://www.mitoaction.org/mitoaction-events/understanding-inflammation/)
- [Power in Stretching](https://www.mitoaction.org/mitoaction-events/power-in-stretching/)
- [Stretching For Everyone: Gym](https://www.mitoaction.org/mitoaction-events/stretching-for-everyone-gym/)
- [Raising Your Voice / Closing](https://www.mitoaction.org/mitoaction-events/raising-your-voice-closing/)
- [Lunch](https://www.mitoaction.org/mitoaction-events/lunch/)
- [MitoSocial Hosted by MitoAction & MitoCanada](https://www.mitoaction.org/mitoaction-events/mitosocial-hostest-by-mitoaction-mitocanada/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-82/) - 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
- [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-3/) - 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
- [IMC 2025](https://www.mitoaction.org/mitoaction-events/imc-2025/) - 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, MitoAction will assemble leading experts to present to patients, families, caregivers, and clinicians. The focus of the
- [FAOD Support: Exploring the Younger Years](https://www.mitoaction.org/mitoaction-events/faod-support-exploring-the-younger-years/) - 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
- [Expert Series: Introducing and Implementing Principles in Aquatic Therapy](https://www.mitoaction.org/mitoaction-events/expert-series-introducing-and-implementing-principles-in-aquatic-therapy/) - This discussion will review the principles of exercise in an aquatic environment and how aquatic therapy can positively impact your health with mito.
- [Expert Series: All About Ketones](https://www.mitoaction.org/mitoaction-events/expert-series-all-about-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.
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-26/) - 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
- [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/) - Whether you are navigating a new symptom, diagnosis, policies, or the impact of a rare disease on your family life, we encourage you to sit in this safe space to discuss the murky waters of change.
- [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-2/) - *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
- [Sandra K Russell Derby Day Benefit for Mito](https://www.mitoaction.org/mitoaction-events/sandra-k-russell-derby-day-benefit-for-mito-3/) - 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 Learn More
- [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/) - Dr. Toufas will expound on his December expert series where he explored how our bodies digest and absorb nutrients from food.
- [MitoArtisan's Playtime - Course 4](https://www.mitoaction.org/mitoaction-events/mitoartisans-playtime-course-4/) - Join Course 4 of the MitoArtisan's Playtime with Christine Knox. This course is entitled: Horse of a Different Color & Stripe.
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-78/) - 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
- [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/) - 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.
- [Making Our Way Through the Shifting Sands of Change](https://www.mitoaction.org/mitoaction-events/making-our-way-through-the-shifting-sands-of-change/) - Managing change is something that our rare disease community is quite familiar with. Join Becky Sansbury and Stephanie Harry for this UNRECORDED space.
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-74/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-25/) - 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
- [2025 Mito Town Meeting](https://www.mitoaction.org/mitoaction-events/2025-mito-town-meeting/) - 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! 2025 Mito Town Meeting Agenda
- [Round Table: Follow-up discussion with Dr. Ted Toufas](https://www.mitoaction.org/mitoaction-events/round-table-follow-up-discussion-with-dr-ted-toufas/) - Dr. Ted Toufas is joining us to discuss outstanding questions from his part 1 of 2 series, “Ins and Outs of the Mito Cocktail”
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [Falmouth Road Race 2025](https://www.mitoaction.org/mitoaction-events/falmouth-road-race-2025/)
- [Matthew Harty Camper Fund Scholarship Opens](https://www.mitoaction.org/mitoaction-events/matthew-harty-camper-fund-scholarship-opens/)
- [Matthew Harty Golf Tournament 2025](https://www.mitoaction.org/mitoaction-events/matthew-harty-golf-tournament-2025/)
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-22/) - 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
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-21/) - 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
- [Barth Syndrome Awareness Day](https://www.mitoaction.org/mitoaction-events/barth-syndrome-awareness-day/)
- [Clinical Trials Day](https://www.mitoaction.org/mitoaction-events/clinical-trials-day/)
- [Giving Tuesday](https://www.mitoaction.org/mitoaction-events/giving-tuesday-2/)
- [World Rare Disease Day - Jeans for Genes](https://www.mitoaction.org/mitoaction-events/world-rare-disease-day-jeans-for-genes-2/)
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-16/) - 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
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-17/) - 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
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-19/) - 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
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-20/) - 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
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-13/) - 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
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-14/) - 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
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-15/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [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/) - 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
- [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-6/) - 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
- [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-5/) - 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
- [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-4/) - 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
- [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-3/) - 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
- [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-2/) - 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
- [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting/) - 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
- [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-7/) - 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
- [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-8/) - 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
- [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-9/) - 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
- [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-10/) - 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
- [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-11/) - 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
- [MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-meeting-12/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-112/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-113/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-115/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-111/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-106/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-107/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-108/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-109/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-102/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-103/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-104/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-97/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-98/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-99/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-100/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-92/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-93/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-94/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-95/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-96/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-91/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-87/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-88/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-89/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-83/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-84/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-85/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-79/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-80/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-81/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-73/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-75/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-76/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-77/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-70/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-71/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-72/) - 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
- [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-5/) - 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
- [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-6/) - 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
- [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-7/) - 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
- [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-8/) - 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
- [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-9/) - 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
- [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-10/) - 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
- [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor/) - 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
- [Wondering Wednesdays with Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-with-genetic-counselor-4/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-20/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-22/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-23/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-13/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-14/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-15/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-16/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-17/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-19/) - 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
- [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/) - Dr. Toufas explores how our bodies absorb nutrients from food, and discuss what difficulties exist in getting supplements/nutrients into our mitochondria.
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-22/) - 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
- [Wondering Wednesdays: Ask the Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-ask-the-genetic-counselor-4/) - 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
- [Open Mito Mic & Art Show](https://www.mitoaction.org/mitoaction-events/open-mito-mic-and-art-show/) - 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
- [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/) - Dr. Bedoyan will present the essentials for understanding PDCD and detail clinical trials and research for PDCD at UPMC Children’s Hospital of Pittsburgh.
- [Colorado MitoSocial](https://www.mitoaction.org/mitoaction-events/colorado-mitosocial/) - 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
- [Texas MitoSocial](https://www.mitoaction.org/mitoaction-events/texas-mitosocial/) - You are invited to the Texas Mito Patient and Family Social hosted by MitoAction on Tuesday, October 22nd
- [Arizona MitoSocial](https://www.mitoaction.org/mitoaction-events/arizona-mitosocial/) - You are invited to the Arizona Mito Patient and Family Social hosted by MitoAction on Wednesday, October 16th.
- [Kansas MitoSocial](https://www.mitoaction.org/mitoaction-events/kansas-mitosocial/) - Join the Kansas Mito Patient and Family Social hosted by MitoAction on Saturday, October 6, 2024
- [2024 Energy Walk - Riverside](https://www.mitoaction.org/mitoaction-events/2024-energy-walk-riverside/) - Register
- [Closed for the Holidays!](https://www.mitoaction.org/mitoaction-events/closed-for-the-holidays/) - 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/) - 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/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-63/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-59/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-56/) - 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
- [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/) - 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
- [Expert Series: Mitochondrial Disease and PMM](https://www.mitoaction.org/mitoaction-events/expert-series-mitochondrial-disease-and-pmm/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-23/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-24/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-september/) - 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
- [North Carolina MitoSocial](https://www.mitoaction.org/mitoaction-events/nc-mitosocial/) - You are invited to the North Carolina Mito Patient and Family Social hosted by MitoAction on Saturday, September 14th
- [MitoArtisan's Playtime - Course 3](https://www.mitoaction.org/mitoaction-events/mitoartisans-playtime-course-3/) - 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
- [2024 Energy Walk & 5k - Rochester](https://www.mitoaction.org/mitoaction-events/2024-mitoaction-energy-walk-5k-rochester/) - Join us at the 2024 MitoAction Energy Walk & 5K in Rochester, New York at Greece Canal Park!
- [Monthly MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/monthly-mitochampions-meeting-9/) - 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
- [Mitochondrial Disease Awareness Week](https://www.mitoaction.org/mitoaction-events/mitochondrial-disease-awareness-week/)
- [2024 Energy Walk - Hartford](https://www.mitoaction.org/mitoaction-events/2024-energy-walk-hartford/) - Register
- [TK2D Awareness Day](https://www.mitoaction.org/mitoaction-events/tk2d-awareness-day-2/)
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-53/) - 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
- [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/) - "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
- [Matthew Harty Golf Tournament](https://www.mitoaction.org/mitoaction-events/matthew-harty-golf-tournament/) - Register
- [Energy Walk - Boston](https://www.mitoaction.org/mitoaction-events/energy-walk-boston-copy/) - Join us at the 20th Annual Energy Walk in Boston at the Franklin Park Zoo to support MitoAction's most impactful programs.
- [California MitoSocial](https://www.mitoaction.org/mitoaction-events/california-mitosocial-2/) - Join the California MitoSocial on August 10th to connect with others in your area on their similar journeys with mito.
- [Celebrating the life of Charlie Mitter](https://www.mitoaction.org/mitoaction-events/celebrating-the-life-of-charlie-mitter/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-47/) - 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
- [CLOSED - Fourth of July](https://www.mitoaction.org/mitoaction-events/closed-fourth-of-july/) - MitoAction will Be closed from Wednesday, July 3rd to Sunday, July 7th for the Fourth of July Holiday Weekend
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-12/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-13/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-14/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-15/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-16/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-17/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-18/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-20/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-6/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-18/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-21/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-24/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-26/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-27/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-28/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-29/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-30/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-31/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-32/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-33/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-34/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-35/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-36/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-37/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-38/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-39/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-40/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-41/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-42/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-43/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-44/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-45/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-46/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-48/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-49/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-50/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-51/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-52/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-54/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-55/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-57/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-58/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-60/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-61/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-62/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-64/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-65/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-66/) - 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
- [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-afternoon-support-call-14/) - 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
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-12/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-68/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-69/) - 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
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call/) - 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
- [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-afternoon-support-call-4/) - 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
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-2/) - 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
- [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-afternoon-support-call-5/) - 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
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-3/) - 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
- [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-afternoon-support-call-6/) - 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
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-4/) - 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
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-5/) - 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
- [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-afternoon-support-call-8/) - 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
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-6/) - 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
- [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-afternoon-support-call-9/) - 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
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-7/) - 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
- [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-afternoon-support-call-10/) - 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
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-8/) - 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
- [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-afternoon-support-call-11/) - 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
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-9/) - 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
- [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-afternoon-support-call-12/) - 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
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-10/) - 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
- [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-afternoon-support-call-13/) - 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
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-evening-support-call-11/) - 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
- [MitoArtisan's Playtime - Course 2](https://www.mitoaction.org/mitoaction-events/mitoartisans-playtime-course-2/) - Creating and connecting with other artists creates healing. Whether you are young or old, an artist or just curious, join us on July 14th as we explore art together.
- [Wondering Wednesdays: Ask the Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-ask-the-genetic-counselor-8/) - 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
- [Wondering Wednesdays: Ask the Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-ask-the-genetic-counselor-7/) - 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
- [Wondering Wednesdays: Ask the Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-ask-the-genetic-counselor-6/) - 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
- [Wondering Wednesdays: Ask the Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-ask-the-genetic-counselor-5/) - 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
- [Wondering Wednesdays: Ask the Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-ask-the-genetic-counselor-9/) - 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
- [Wondering Wednesdays: Ask the Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-ask-the-genetic-counselor-14/) - 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
- [Wondering Wednesdays: Ask the Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-ask-the-genetic-counselor-13/) - 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
- [Wondering Wednesdays: Ask the Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-ask-the-genetic-counselor-12/) - 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
- [Wondering Wednesdays: Ask the Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-ask-the-genetic-counselor-11/) - 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
- [Wondering Wednesdays: Ask the Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-ask-the-genetic-counselor-10/) - 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
- [Washington State MitoSocial](https://www.mitoaction.org/mitoaction-events/washington-state-mitosocial/) - Join our Washington State MitoSocial Event hosted by MitoAction on Friday, June 14th.
- [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/) - Join this Expert Series with the Chemistry Rx team as they discuss Enhancing the Lives of Mitochondrial Disease Patients Through Compounded Treatment Options
- [California MitoSocial](https://www.mitoaction.org/mitoaction-events/california-mitosocial/) - Join our California MitoSocial event hosted by MitoAction on Saturday, June 15th.
- [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/) - Register
- [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/) - Join our Expert Series on Extensive DNA Sequencing in Cyclic Vomiting and Chronic Fatigue: Implication for Genetic Testing and Personalized Treatment Options.
- [Expert Series: Understanding diseases of mitochondrial DNA maintenance](https://www.mitoaction.org/mitoaction-events/expert-series-understanding-diseases-of-mitochondrial-dna-maintenance/) - Dr. Copeland will summarize the genes involved in copying our mito DNA and how they participate in preventing or causing mutations in mitochondrial DNA.
- [2024 Energy Walk & 5k - Syracuse](https://www.mitoaction.org/mitoaction-events/2023-mitoaction-energy-walk-5k-syracuse-copy/) - Join us at the Syracuse Energy Walk & 5K on Sunday, September 15, 2024 at the Green Lakes State Park!
- [INFORM Lecture Series](https://www.mitoaction.org/mitoaction-events/inform-lecture-series-2/) - 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. If
- [Canadian MitoSocial](https://www.mitoaction.org/mitoaction-events/canadian-mitosocial-2/) - Join the Canadia MitoSocial to meet with other families living with mito and make connections with others in your area who face similar situations daily
- [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/) - Join us on Sunday, April 14, 2024 for the Spanish MitoSocial. Connect with others on their similar journey with mito.
- [MitoArtisan's Playtime - Course 1](https://www.mitoaction.org/mitoaction-events/mitoartisans-playtime/) - Creating and connecting with other artists creates healing. Join Course 1 of MitoArtisan's Playtime with Christine Knox on April 14, 2024.
- [2024 Matthew Harty Mito Classic](https://www.mitoaction.org/mitoaction-events/2024-matthew-harty-mito-classic/) - Join MitoAction and members of the North Andover community at the North Andover Youth Center for the 11th annual Matthew Harty Mito Classic!
- [Expert Series: The Cell Danger Response, Healing, and Mitochondrial Disease](https://www.mitoaction.org/mitoaction-events/expert-series-cell-danger-response/) - Join our April Expert Series to hear Dr Robert Naviaux present on The Cell Danger Response, Healing, and Mitochondrial Disease.
- [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/) - Dr. Jessica Gold, a medical geneticist trained in pediatrics and internal medicine, will lead us in a roundtable discussion about reproductive health in FAODs.
- [INFORM Lecture Series](https://www.mitoaction.org/mitoaction-events/inform-lecture-series-march/) - 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. If you
- [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/) - Dr. Jessica Gold, a medical geneticist trained in pediatrics and internal medicine, will lead us in a roundtable discussion about reproductive health in FAODs.
- [Canadian MitoSocial](https://www.mitoaction.org/mitoaction-events/canadian-mitosocial/) - Join the Canadian Mito Patient and Family Social hosted by MitoAction and Mito Champion Christine Knox.
- [World Rare Disease Day](https://www.mitoaction.org/mitoaction-events/world-rare-disease-day-jeans-for-genes/) - Learn More!
- [Expert Series: FAOD For Beginners](https://www.mitoaction.org/mitoaction-events/expert-series-mito-immune-cell-function-copy-copy/) - This Expert Series 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.
- [INFORM Lecture Series](https://www.mitoaction.org/mitoaction-events/inform-lecture-series-copy/) - 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 If you
- [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/) - Join Dr. Pamela Tucker in a round table discussion regarding the benefits of consistent strength-building and a review of exercises to reduce the risk of injury
- [Monthly MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/monthly-mitochampions-meeting-3/) - 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
- [Book Release: Breath Taking by Jessica Fein](https://www.mitoaction.org/mitoaction-events/book-release-breath-taking-by-jessica-fein/) - 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! "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
- [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/) - In this Expert Series presentation, Dr. Alessandro Prigione will discuss how stem cells are generated from patients to derive models of the brain.
- [Alaska MitoSocial](https://www.mitoaction.org/mitoaction-events/alaska-mitosocial/) - Join us on Tuesday, February 20th, for the Alaska MitoSocial. Join to meet others in your area who are going through their journey with mitochondrial disease.
- [SOCIAL PARA PACIENTES Y FAMILIARES DE MITO EN ESPAÑOL](https://www.mitoaction.org/mitoaction-events/social-para-pacientes-y-familiares-de-mito-en-espanol/) - Register
- [Sandra K. Russell Derby Day Benefit for Mito](https://www.mitoaction.org/mitoaction-events/skr-derby-day/) - 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.
- [Monthly MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/monthly-mitochampions-meeting/) - 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
- [Monthly MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/monthly-mitochampions-meeting-12/) - 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
- [Monthly MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/monthly-mitochampions-meeting-11/) - 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
- [Monthly MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/monthly-mitochampions-meeting-10/) - 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
- [Monthly MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/monthly-mitochampions-meeting-8/) - 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
- [Monthly MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/monthly-mitochampions-meeting-7/) - 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
- [Monthly MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/monthly-mitochampions-meeting-6/) - 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
- [Monthly MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/monthly-mitochampions-meeting-5/) - 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
- [Monthly MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/monthly-mitochampions-meeting-4/) - 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
- [Monthly MitoChampions Meeting](https://www.mitoaction.org/mitoaction-events/monthly-mitochampions-meeting-2/) - 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
- [Expert Series: Leigh syndrome: A factory for making viruses?](https://www.mitoaction.org/mitoaction-events/expert-series-mito-immune-cell-function-copy/) - 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
- [2024 Mito Town Meeting](https://www.mitoaction.org/mitoaction-events/2024-mito-town-meeting/) - 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 2024 Mito Town Meeting Agenda
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-12/) - 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
- [Giving Tuesday](https://www.mitoaction.org/mitoaction-events/giving-tuesday/)
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-11/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-10/) - 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
- [LHON Awareness Day](https://www.mitoaction.org/mitoaction-events/lhon-awareness-day-2/)
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-9/) - 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
- [Falmouth Road Race](https://www.mitoaction.org/mitoaction-events/falmouth-road-race/)
- [National Non-Profit Day](https://www.mitoaction.org/mitoaction-events/national-non-profit-day/)
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-8/) - 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
- [FAOD Conference](https://www.mitoaction.org/mitoaction-events/faod-conference/)
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-7/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-6/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-5/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-4/) - 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
- [2024 MHCF Scholarships Opens](https://www.mitoaction.org/mitoaction-events/2024-mhcf-scholarships-opens/)
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-3/) - 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
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me-2/) - 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
- [INFORM Lecture Series](https://www.mitoaction.org/mitoaction-events/inform-lecture-series/) - 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 Andrea Pereyra,
- [Expert Series: Stride Study for PMM Patients](https://www.mitoaction.org/mitoaction-events/expert-series-reneo-stride-update/) - 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
- [Hanukkah](https://www.mitoaction.org/mitoaction-events/happy-hanukkah/) - 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.
- [CPEO & Me](https://www.mitoaction.org/mitoaction-events/cpeo-me/2023-09-07/) - 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
- [Expert Series: Understanding Upcoming MCADD Trials](https://www.mitoaction.org/mitoaction-events/expert-series-modeling-mitochondrial-disease-patient-derived-stem-cells-brain-organoids-copy/) - 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
- [Maine Virtual MitoSocial](https://www.mitoaction.org/mitoaction-events/maine-virtual-mitosocial/) - 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! REGISTER
- [SOCIAL PARA PACIENTES Y FAMILIARES DE MITO EN ESPAÑOL](https://www.mitoaction.org/mitoaction-events/virtual-mitosocial-espanol/) - Register
- [Pennsylvania Virtual MitoSocial](https://www.mitoaction.org/mitoaction-events/pennsylvania-virtual-mitosocial/) - 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! REGISTER
- [Open Mito Mic & Art Show](https://www.mitoaction.org/mitoaction-events/open-mito-mic-art-show/) - 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
- [Energy Walk - Rochester](https://www.mitoaction.org/mitoaction-events/energy-walk-rochester-2/) - Join us for the 5th annual Rochester, NY Energy Walk! 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.
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-25-copy/) - 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
- [Thanksgiving](https://www.mitoaction.org/mitoaction-events/thanksgiving/) - 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.
- [Christmas Day](https://www.mitoaction.org/mitoaction-events/christmas-day/) - 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.
- [Expert Series: Ultra-Rare Mitochondrial Diseases: Development Challenges and Opportunities](https://www.mitoaction.org/mitoaction-events/expert-series-ultra-rare-mitochondrial-disease-challenges-opportunities/) - 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
- [Massachusetts Virtual MitoSocial](https://www.mitoaction.org/mitoaction-events/massachusetts-virtual-mitosocial/) - 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! REGISTER
- [Expert Series: LCHADD Retinopathy Update: Moving Toward a Treatment](https://www.mitoaction.org/mitoaction-events/expert-series-mito-lchadd-retinopathy-update/) - 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
- [LHON Awareness Day](https://www.mitoaction.org/mitoaction-events/lhon-awareness-day/) - 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
- [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/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-13/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-14/) - 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
- [MitoChampions Monthly Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-monthly-meeting-copy/) - 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
- [2023 MitoAction Energy Walk & 5k - Syracuse](https://www.mitoaction.org/mitoaction-events/2023-mitoaction-energy-walk-5k-syracuse/) - Learn More or Register Today
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-11/) - 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
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-support-call-6/) - 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
- [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-support-call-7-copy/) - 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
- [Energy Walk - Boston](https://www.mitoaction.org/mitoaction-events/energy-walk-boston/) - 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
- [Awareness Week](https://www.mitoaction.org/mitoaction-events/awareness-week-2/)
- [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-afternoon-support-call/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-16/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-17/) - 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
- [MitoChampions Monthly Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-monthly-meeting-2/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-15/) - 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
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-support-call-5/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-10-copy/) - 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
- [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/) - 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
- [10th Annual Matthew Harty Golf Tournament](https://www.mitoaction.org/mitoaction-events/10th-annual-matthew-harty-golf-tournament/) - Join us on Monday, October 2nd for the 10th Annual Matthew Harty Golf Tournament. Shotgun Start at 8:30am! 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
- [Expert Series: Immune Cell Function in Mitochondrial Disease](https://www.mitoaction.org/mitoaction-events/expert-series-mito-immune-cell-function/) - 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
- [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/) - 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
- [MitoChampions Monthly Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-monthly-meeting-3/) - 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
- [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-afternoon-support-call-2/) - 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
- [FAOD Monthly Afternoon Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-afternoon-support-call-3/) - 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,
- [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/) - 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
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-support-call-3/) - 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
- [MitoChampions Monthly Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-monthly-meeting-4/) - 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
- [TK2d Awareness Day](https://www.mitoaction.org/mitoaction-events/tk2d-awareness-day/) - 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 info@mitopatients.org.
- [Expert Series: At the Crossroad of Mitochondrial Disease and Mitochondrial Dysfunction](https://www.mitoaction.org/mitoaction-events/expert-series-mito-confusion/) - 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 to discuss the confusion that exists when diagnosing mitochondrial disease. Register
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-support-call-7/) - 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
- [FAOD Monthly Evening Support Call](https://www.mitoaction.org/mitoaction-events/faod-monthly-support-call-4/) - 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
- [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/) - 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
- [Washington DC Virtual MitoSocial](https://www.mitoaction.org/mitoaction-events/washington-dc-virtual-mitosocial/) - If you live in the Washington DC area, join us for a virtual MitoSocial on Saturday, September 9th 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! REGISTER
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-21/) - 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
- [Nebraska Virtual MitoSocial](https://www.mitoaction.org/mitoaction-events/nebraska-virtual-mitosocial/) - If you live in Nebraska, this is a wonderful opportunity for you to connect with other families in your local community who are affected by mitochondrial disease. Attendees will connect in a safe space to share and give support to one another, creating an extended community as you move forward day-to-day with mito. Join host
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-19/) - 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
- [MitoChampions Monthly Meeting](https://www.mitoaction.org/mitoaction-events/mitochampions-monthly-meeting/) - 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
- [Indiana Virtual MitoSocial](https://www.mitoaction.org/mitoaction-events/indiana-virtual-mitosocial/) - Join MitoAction, along with host Katie Jackson, to connect with other families, caregivers and patients in your local community. Build your local community of support, give and share support and know that you are not along on your journey with mitochondria disease. No matter what stage of the journey you are in, you are welcome
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-9/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-8/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-2-copy/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-23-copy/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-25/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-23/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-22/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-20/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-19/) - 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
- [Expert Series:  Rhabdo Roundtable for Families & Caregivers of FAOD Patients](https://www.mitoaction.org/mitoaction-events/expert-series-rhabdo-roundtable-for-families-caregivers-of-faod-patients/) - This month our FAOD Support Call will look a little different! Rhabdomyolysis can feel like being lost without a road map leading you home. Join us at 8:15pm for a discussion about your child's personal experiences with rhabdo, from symptoms to recovery. Physical Therapist Pamela Tucker will then present a draft protocol for rehabilitation post
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-12/) - 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
- [Weekly Support Call](https://www.mitoaction.org/mitoaction-events/weekly-support-call-10/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-11/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-10/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-9/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-8/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-7/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-6/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-5/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-4/) - 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
- [Wondering Wednesdays: Ask the Genetic Counselor](https://www.mitoaction.org/mitoaction-events/wondering-wednesdays-ask-the-genetic-counselor-3/2023-08-23/) - 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
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-2021-11-21/) - 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" ]
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-2021-12-19/) - 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" ]
- [Men's Support Call](https://www.mitoaction.org/mitoaction-events/mens-support-call-2022-02-13/) - 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" ]

## Glossary Terms

- [Y chromosome](https://www.mitoaction.org/glossary/y-chromosome/) - 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/) - 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/) - 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/) - 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/) - An antioxidant in the cellular and organelle membrane.
- [X-linked dominant (XLD inheritance)](https://www.mitoaction.org/glossary/x-linked-dominant-xld-inheritance/) - 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/) - 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/) - Specific change in the DNA.
- [Vasculitis](https://www.mitoaction.org/glossary/vasculitis/) - 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/) - 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/) - 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/) - Refers to alternating normal sinus and premature ventricular complexes.
- [Vitamin B12 (Cyanocobalamin)](https://www.mitoaction.org/glossary/vitamin-b12-cyanocobalamin/) - Aids in red blood cell growth and proliferation.
- [Tyrosine](https://www.mitoaction.org/glossary/tyrosine/) - 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/) - 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/) - 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/) - 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/) - A form of eye inflammation. If affects the middle layer of tissue in the eye wall.
- [Valine](https://www.mitoaction.org/glossary/valine/) - 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/) - 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/) - 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/) - 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/) - 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/) - A milder version of DM type 1.
- [Transient (Temporary) Ischemic Attack (TIA)](https://www.mitoaction.org/glossary/transient-temporary-ischemic-attack-tia/) - 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/) - 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/) - When a blood clot blocks a vein or artery.
- [Tilt Table Test](https://www.mitoaction.org/glossary/tilt-table-test/) - 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.
- [Timothy Syndrome](https://www.mitoaction.org/glossary/timothy-syndrome/) - 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/) - Medication to help relax certain muscles.
- [Thymidine Kinase Type 2 Deficiency Tk2D)](https://www.mitoaction.org/glossary/thymidine-kinase-type-2-deficiency-tk2d/) - 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/) - 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/) - Condition in which both eyes do not align simultaneously when looking at the same thing.
- [Syncope](https://www.mitoaction.org/glossary/syncope/) - 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/) - 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/) - 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/) - A medication that is used to treat symptoms of epilepsy, trigeminal neuralgia and bipolar mania.
- [Succinic acid](https://www.mitoaction.org/glossary/succinic-acid/) - 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/) - 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/) - Abnormal muscle stiffness or muscle tone which can cause problems with movement and speech
- [Shone's Complex](https://www.mitoaction.org/glossary/shones-complex/) - A rare congenital heart disease consisting of multiple left heart obstructive defects.
- [Sjogren's Syndrome](https://www.mitoaction.org/glossary/sjogrens-syndrome/) - A disorder of the immune system. It is identified by dry mouth and eyes.
- [Sleep terrors](https://www.mitoaction.org/glossary/sleep-terrors/) - 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/) - 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/) - 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/) - 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/) - Episodes of abnormal electrical activity in the brain.
- [Reglan](https://www.mitoaction.org/glossary/reglan/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - A high throughput method to measure how proteins interact and function.
- [Prion diseases](https://www.mitoaction.org/glossary/prion-diseases/) - 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/) - 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/) - 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/) - 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/) - A mineral and electrolyte that helps your muscles work.
- [Prealbumin](https://www.mitoaction.org/glossary/prealbumin/) - 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/) - 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/) - Extra heartbeats that begin in one of the heart's two lower pumping chambers (ventricles).
- [Polymyositis](https://www.mitoaction.org/glossary/polymyositis/) - An uncommon inflammatory disease that causes muscle weakness affecting both sides of your body.
- [Pectus Excavatum](https://www.mitoaction.org/glossary/pectus-excavatum/) - 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/) - 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/) - 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/) - Variations in the DNA that we all have aren't disease causing.
- [Physical therapy (PT)](https://www.mitoaction.org/glossary/physical-therapy-pt/) - Treatments aimed at helping someone improve the ability to move parts of their body.
- [Ozempic](https://www.mitoaction.org/glossary/ozempic/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - Treatments aimed at helping someone complete certain daily tasks of daily living
- [Organic Acidemia](https://www.mitoaction.org/glossary/organic-acidemia/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - A combination of acetaminophen and hydrocodone.
- [Nabilone, Cesamet](https://www.mitoaction.org/glossary/nabilone-cesamet/) - 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/) - 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/) - 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/) - 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/) - Mitochondrial DNA deletion syndromes are caused by deletions of the mitochondrial DNA.
- [Myocarditis](https://www.mitoaction.org/glossary/myocarditis/) - 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/) - 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/) - 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/) - A condition characterized by overwhelming fatigue that is not improved by rest.
- [Mitochondrial Dysfunction](https://www.mitoaction.org/glossary/mitochondrial-dysfunction/) - 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/) - A prescription medicine used in adults to treat a type of constipation called chronic idiopathic constipation.
- [Mottles](https://www.mitoaction.org/glossary/mottles/) - 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/) - 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/) - 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/) - 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/) - Substances or conditions that impact the body's ability to break down food for energy.
- [Microarray Analysis](https://www.mitoaction.org/glossary/microarray-analysis/) - 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/) - A compound that reacts with Vitamin B-12 to produce coenzyme A (CoA).
- [Mic-Key button](https://www.mitoaction.org/glossary/mic-key-button/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - A condition associated with allergy cells and are responsible for immediate allergic reactions.
- [Lysinuric Protein Intolerance](https://www.mitoaction.org/glossary/lysinuric-protein-intolerance/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - An indicator of a proximal urea cycle defect.
- [Low plasma taurine](https://www.mitoaction.org/glossary/low-plasma-taurine/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - An anticonvulsant.
- [Ketones](https://www.mitoaction.org/glossary/ketones/) - 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/) - 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/) - 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/) - An amino acid that helps to build protein in the body.
- [Inheritance](https://www.mitoaction.org/glossary/inheritance-2/) - The way a genetic condition is passed down in a family.
- [Inherited condition](https://www.mitoaction.org/glossary/inherited-condition-2/) - A condition that is passed down in families through DNA
- [Interstitial Cystitis](https://www.mitoaction.org/glossary/interstitial-cystitis/) - 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/) - A rare condition that causes muscle weakness and damage.
- [Implantable cardiac defibrillators (ICD)](https://www.mitoaction.org/glossary/implantable-cardiac-defibrillators-icd/) - 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/) - 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/) - 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/) - 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/) - An antibody isotype is usually co-expressed with another cell surface antibody called IgM.
- [Immunoglobulin IgE](https://www.mitoaction.org/glossary/immunoglobulin-ige/) - 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/) - 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/) - The largest antibodies and the first to respond to infections.
- [IEP, 504](https://www.mitoaction.org/glossary/iep-504/) - 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/) - 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/) - 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/) - A dangerous metabolic disturbance characterized by an excess of ammonia in the blood.
- [Hypoparathyroidism](https://www.mitoaction.org/glossary/hypoparathyroidism/) - 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/) - Low intraocular pressure can adversely impact eyes.
- [Idebenona](https://www.mitoaction.org/glossary/idebenona/) - 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/) - 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/) - 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/) - Inadequate blood flow to the organs, usually occurring with dangerously low blood pressure.
- [HIDA scan](https://www.mitoaction.org/glossary/hida-scan/) - 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/) - 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/) - 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/) - A specific rare form of hypothyroid myopathy, which causes proximal weakness and pseudohypertrophy of the muscles.
- [Glaucoma](https://www.mitoaction.org/glossary/glaucoma/) - 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/) - 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/) - The chronic inflammation of the thyroid.
- [Hearing Aids](https://www.mitoaction.org/glossary/hearing-aids/) - 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/) - A branch of medicine focusing on the blood and its disorders.
- [Heme](https://www.mitoaction.org/glossary/heme/) - 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/) - A condition that affects the normal spontaneous movement of the muscles in the stomach.
- [Gabapentin](https://www.mitoaction.org/glossary/gabapentin/) - 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/) - A test to determine the time it takes a meal to m0ve through a person's stomach.
- [Gastroenterology](https://www.mitoaction.org/glossary/gastroenterology/) - 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/) - 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/) - 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/) - Problems in the stomach or intestines.
- [Ferritin Blood test](https://www.mitoaction.org/glossary/ferritin-blood-test/) - Helps your doctor understand how much iron your body stores.
- [Ferroptosis](https://www.mitoaction.org/glossary/ferroptosis/) - 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/) - A disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues.
- [Fibrosis](https://www.mitoaction.org/glossary/fibrosis/) - The thickening and scarring of connective tissue.
- [First Degree AV Block](https://www.mitoaction.org/glossary/first-degree-av-block/) - A condition of abnormally slow conduction of the Atrioventricular node.
- [Folinic Acid (Leucovorin)](https://www.mitoaction.org/glossary/folinic-acid-leucovorin/) - Reduced form of folic acid (vitamin B9).
- [Exocrine pancreatic Insufficiency](https://www.mitoaction.org/glossary/exocrine-pancreatic-insufficiency/) - It occurs when your pancreas doesn't produce enough digestive enzymes.
- [Exophoria](https://www.mitoaction.org/glossary/exophoria/) - 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/) - 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/) - A blood protein that contains iron.
- [Facioscapulohumeral muscular dystrophy (FSHD](https://www.mitoaction.org/glossary/facioscapulohumeral-muscular-dystrophy-fshd/) - 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/) - 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/) - 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/) - A group of rare diseases that cause fragile, blistering skin.
- [Eosinophilic Esophagitis](https://www.mitoaction.org/glossary/eosinophilic-esophagitis/) - 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/) - 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/) - 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/) - A form of vitamin C that is better absorbed.
- [Everolimus](https://www.mitoaction.org/glossary/everolimus/) - 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/) - 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/) - 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/) - 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/) - 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/) - A test that detects in your brain using electrodes on your scalp.
- [Electromyography (EMG)](https://www.mitoaction.org/glossary/electromyography-emg/) - A diagnostic procedure to assess the health of muscle and nerve cells that control each.
- [Electroretinogram](https://www.mitoaction.org/glossary/electroretinogram/) - A diagnostic test that measures the electrical activity of the retina in response to a light stimulus.
- [Dysarthria](https://www.mitoaction.org/glossary/dysarthria/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - A gene from either parent which can express a disease.
- [Depression](https://www.mitoaction.org/glossary/depression/) - 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/) - 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/) - This process often inhibits the expression of certain genes.
- [Growth Retardation](https://www.mitoaction.org/glossary/growth-retardation/) - When the fetus does not develop at a normal rate.
- [Docosahexaenoic Acid (DHA)](https://www.mitoaction.org/glossary/docosahexaenoic-acid-dha/) - An Omega -3 fatty acid found in cold water, fatty fish.
- [Crohn's Disease](https://www.mitoaction.org/glossary/crohns-disease/) - 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/) - 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/) - 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/) - 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/) - 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/) - It is used to treat symptoms of mastocytosis. The product is available as a solution.
- [Ceramide levels](https://www.mitoaction.org/glossary/ceramide-levels/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - A rare, genetic disorder of lipid metabolism that primarily affects males.
- [c16 Palmitate](https://www.mitoaction.org/glossary/c16-palmitate/) - 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/) - 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/) - An uncommon speech disorder in which a child has difficulty making accurate movements when speaking.
- [Rhabdomyolysis](https://www.mitoaction.org/glossary/rhabdomyolysis/) - 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
- [Vitamin B6 (Pyridoxine)](https://www.mitoaction.org/glossary/vitamin-b6-pyridoxine/) - 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/) - 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/) - 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/) - Treatment aimed at relieving a symptom rather than fixing the root cause of that symptom.
- [Cardiology](https://www.mitoaction.org/glossary/cardiology/) - The branch of medicine focusing on the heart and circulatory system
- [Alpha lipoic acid](https://www.mitoaction.org/glossary/alpha-lipoic-acid/) - 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
- [Vitamin B1 (Thiamine)](https://www.mitoaction.org/glossary/vitamin-b1-thiamine/) - A critical B vitamin that supports energy metabolism and nerve function.
- [Vitamin B12 (Cobalamin)](https://www.mitoaction.org/glossary/vitamin-b12-cobalamin/) - 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/) - 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/) - 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
- [Ophthalmoplegia](https://www.mitoaction.org/glossary/ophthalmoplegia/) - 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/) - 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/) - 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
- [Variant of Unknown Significance (VUS)](https://www.mitoaction.org/glossary/variant-of-unknown-significance-vus/) - 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/) - 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/) - 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
- [Dronabinol](https://www.mitoaction.org/glossary/dronabinol/) - A man made compound that contains cannabinoids found in the marijuana plant.
- [Sepsis](https://www.mitoaction.org/glossary/sepsis/) - 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/) - 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/) - 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/) - Resembling serum; filled with serum
- [Serum](https://www.mitoaction.org/glossary/serum/) - Clear liquid part of blood, with blood cells and clotting proteins removed.
- [DEXA scan](https://www.mitoaction.org/glossary/dexa-scan/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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
- [Ophthalmology](https://www.mitoaction.org/glossary/ophthalmology/) - 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/) - Causing disease. Often used in reference to harmful DNA mutations.
- [Optometrist](https://www.mitoaction.org/glossary/optometrist/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - The medical specialty focusing on the kidneys.
- [Neurology](https://www.mitoaction.org/glossary/neurology/) - Medical specialty focusing on disorders of the nervous system.
- [Neutropenia](https://www.mitoaction.org/glossary/neutropenia/) - 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/) - 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/) - 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
- [Hypoglycemia](https://www.mitoaction.org/glossary/hypoglycemia-2/) - Low blood sugar.
- [Lennox Gastaut Syndrome](https://www.mitoaction.org/glossary/lennox-gastaut-syndrome/) - 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/) - 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/) - 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/) - 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/) - 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
- [Functional Neurological Disorder](https://www.mitoaction.org/glossary/functional-neurological-disorder/) - 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/) - Relating to the genital and urinary organs.
- [HELLP Syndrome](https://www.mitoaction.org/glossary/hellp-syndrome/) - 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/) - 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/) - 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/) - The medical term for difficulty in swallowing. Dysphagia is associated with several types of mitochondrial disease.
- [Endocrinology](https://www.mitoaction.org/glossary/endocrinology/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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
- [Conversion Disorder](https://www.mitoaction.org/glossary/conversion-disorder/) - 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
- [Dietitian, Registered Dietitian](https://www.mitoaction.org/glossary/dietitian-registered-dietitian/) - A licensed healthcare provider who specializes in nutrition and its effect on health.
- [Cognitive decline](https://www.mitoaction.org/glossary/cognitive-decline-2/) - Term used to describe trouble with memory, slower thinking skills, loss of awareness and judgment.
- [Cofactor](https://www.mitoaction.org/glossary/cofactor/) - 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/) - 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/) - 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/) - 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/) - 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
- [Chromosome](https://www.mitoaction.org/glossary/chromosome-2/) - 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/) - 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
- [Chiari Malformation](https://www.mitoaction.org/glossary/chiari-malformation/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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
- [Cerebrospinal fluid (CSF)](https://www.mitoaction.org/glossary/cerebrospinal-fluid-csf/) - The fluid surrounding the brain and spinal cord, inside the tough membrane called the dura mater.
- [Bilirubin](https://www.mitoaction.org/glossary/bilirubin/) - 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/) - 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
- [Bradycardia](https://www.mitoaction.org/glossary/bradycardia/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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
- [Autoimmunity](https://www.mitoaction.org/glossary/autoimmunity/) - 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
- [Bicarbonate](https://www.mitoaction.org/glossary/bicarbonate/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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
- [Accommodations for disabilities, school and work](https://www.mitoaction.org/glossary/accommodations-for-disabilities-school-and-work/) - 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/) - 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/) - 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
- [Adenovirus](https://www.mitoaction.org/glossary/adenovirus/) - 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/) - 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/) - 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/) - DNA mutations that has unknown mutations of disease causation.
- [X-linked dominant](https://www.mitoaction.org/glossary/x-linked-dominant/) - 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/) - 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/) - 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/) - 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/) - 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/) - It is an enzyme deficiency defined by muscle weakness, difficulty breathing, and droopy or saggy eyelids.
- [Tocopheryl](https://www.mitoaction.org/glossary/tocopheryl/) - An antioxidant in the cellular and organelle membrane.
- [Topamax](https://www.mitoaction.org/glossary/topamax/) - 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/) - 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/) - When a blood clot blocks a vein or artery.
- [Steroids](https://www.mitoaction.org/glossary/steroids/) - 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/) - The output of the metabolism of glucose known as glycolysis.
- [Symptomatic treatment](https://www.mitoaction.org/glossary/symptomatic-treatment/) - 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/) - Episodes of abnormal electrical activity in the brain.
- [Spasticity](https://www.mitoaction.org/glossary/spasticity/) - Abnormal muscle stiffness or muscle tone which can cause problems with movement and speech
- [Specialist](https://www.mitoaction.org/glossary/specialist/) - A doctor that focuses on one branch of medicine.
- [Riboflavin](https://www.mitoaction.org/glossary/riboflavin/) - 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/) - 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/) - Extra heartbeats that begin in one of the heart's two lower pumping chambers (ventricles).
- [Pyridoxine](https://www.mitoaction.org/glossary/pyridoxine/) - A supplement helps with neuropathy and is a component of neurotransmitter synthesis.
- [Pyruvate levels](https://www.mitoaction.org/glossary/pyruvate-levels/) - The output of the metabolism of glucose known as glycolysis.
- [Renal Tubular Acidosis](https://www.mitoaction.org/glossary/renal-tubular-acidosis/) - 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/) - 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/) - 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/) - Difficulty having perception or awareness of the position and movement of the body.
- [Protein substrates](https://www.mitoaction.org/glossary/protein-substrates-2/) - 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/) - Pulse oximeter: A device used to measure arterial blood oxygenation.
- [POTS](https://www.mitoaction.org/glossary/pots/) - 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/) - Proteins that can fold incorrectly and cause damage to the brain.
- [Polymyositis](https://www.mitoaction.org/glossary/polymyositis-2/) - An uncommon inflammatory disease that causes muscle weakness affecting both sides of your body.
- [Polyneuropathy](https://www.mitoaction.org/glossary/polyneuropathy-2/) - 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/) - 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/) - 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/) - Treatments aimed at helping someone improve the ability to move parts of their body.
- [Organic Academia](https://www.mitoaction.org/glossary/organic-academia/) - 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/) - Treatments aimed at helping someone complete certain daily tasks of daily living
- [Ornithine Transcarbamylase Deficiency](https://www.mitoaction.org/glossary/ornithine-transcarbamylase-deficiency-2/) - 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/) - Screening done during the first 48-72 hours of life that look for certain treatable genetic conditions.
- [Niacin](https://www.mitoaction.org/glossary/niacin/) - 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/) - Something that doesn't point to one specific cause.
- [Myotonic Dystrophy Type 1](https://www.mitoaction.org/glossary/myotonic-dystrophy-type-1-2/) - A genetic disorder that causes progressive muscle weakness affecting all of the bodies organs and muscles.
- [Nabilone](https://www.mitoaction.org/glossary/nabilone/) - 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/) - 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/) - A condition characterized by overwhelming fatigue that is not improved by rest.
- [Mitochondrial Dysfunction](https://www.mitoaction.org/glossary/mitochondrial-dysfunction-2/) - 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/) - Caused by many things.
- [Mutations](https://www.mitoaction.org/glossary/mutations/) - Changes in the DNA.
- [Methylenetetrahydrofolate Reductase](https://www.mitoaction.org/glossary/methylenetetrahydrofolate-reductase-2/) - 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/) - 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/) - Buccal Swab test to analyze the Mitochondrial Electron Transport Chain Complex (ETC 1 & 5).
- [Mitochondrial](https://www.mitoaction.org/glossary/mitochondrial/) - Related to the mitochondria.
- [Mitochondrial factors](https://www.mitoaction.org/glossary/mitochondrial-factors/) - Changes in a part of the cell called the mitochondria.
- [Mitochondrial methionyl-tRNA formyltransferase](https://www.mitoaction.org/glossary/mitochondrial-methionyl-trna-formyltransferase/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - Helps transport long-chain fatty acids across mitochondrial inner membrane.
- [Interstitial Cystitis](https://www.mitoaction.org/glossary/interstitial-cystitis-2/) - 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/) - 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/) - 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/) - 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/) - The way a genetic condition is passed down in a family.
- [Inherited condition](https://www.mitoaction.org/glossary/inherited-condition/) - A condition that is passed down in families through DNA
- [IEP](https://www.mitoaction.org/glossary/iep/) - 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/) - Low blood sugar.
- [Implantable cardiac defibrillators](https://www.mitoaction.org/glossary/implantable-cardiac-defibrillators-2/) - 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/) - 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/) - The percent of mutated cells.
- [Hepatologists](https://www.mitoaction.org/glossary/hepatologists/) - 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/) - 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
- [Health Plan](https://www.mitoaction.org/glossary/health-plan/) - 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/) - 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/) - Problems in the stomach or intestines.
- [Folinic Acid](https://www.mitoaction.org/glossary/folinic-acid/) - Reduced form of folic acid (vitamin B9).
- [Friedreich's Ataxia](https://www.mitoaction.org/glossary/friedreichs-ataxia/) - 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/) - A condition that affects the normal spontaneous movement of the muscles in the stomach.
- [Flaxseed](https://www.mitoaction.org/glossary/flaxseed/) - 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/) - 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/) - A group of rare diseases that cause fragile, blistering skin.
- [Epileptologist](https://www.mitoaction.org/glossary/epileptologist-2/) - A neurologist that specializes in the treatment of seizures and epilepsy.
- [Exocrine pancreatic Insufficiency](https://www.mitoaction.org/glossary/exocrine-pancreatic-insufficiency-2/) - It occurs when your pancreas doesn't produce enough digestive enzymes.
- [Facioscapulohumeral muscular dystrophy](https://www.mitoaction.org/glossary/facioscapulohumeral-muscular-dystrophy/) - 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/) - 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/) - A test that detects in your brain using electrodes on your scalp.
- [Electromyography](https://www.mitoaction.org/glossary/electromyography/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - A trained healthcare provider who specializes in nutrition and its effect on health.
- [Docosahexaenoic Acid](https://www.mitoaction.org/glossary/docosahexaenoic-acid/) - An Omega -3 fatty acid found in cold water, fatty fish.
- [Dominant](https://www.mitoaction.org/glossary/dominant/) - A gene from either parent which can express a disease.
- [Dementia](https://www.mitoaction.org/glossary/dementia/) - An overarching term for memory loss and other changes in thinking.
- [Creatine Kinase](https://www.mitoaction.org/glossary/creatine-kinase/) - 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/) - 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/) - Aids in red blood cell growth and proliferation.
- [Crohn's Disease](https://www.mitoaction.org/glossary/crohns-disease-2/) - 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/) - 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/) - 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/) - 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/) - 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/) - A specific part of the placenta, or organ connecting a baby to their mother during pregnancy.
- [Chromosome](https://www.mitoaction.org/glossary/chromosome/) - Molecule made up of proteins and strands of DNA.
- [Chronic Intestinal Pseudo-Obstruction](https://www.mitoaction.org/glossary/chronic-intestinal-pseudo-obstruction/) - 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/) - 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/) - 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/) - 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/) - A measure of the proportion of healthy cells in a population.
- [Central Line](https://www.mitoaction.org/glossary/central-line/) - 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/) - 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/) - The fluid surrounding the brain and spinal cord.
- [Ceruloplasmin](https://www.mitoaction.org/glossary/ceruloplasmin-2/) - 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/) - 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/) - Conditions that affect the heart muscle.
- [Cardiopulmonary Exercise test](https://www.mitoaction.org/glossary/cardiopulmonary-exercise-test-2/) - 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/) - 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/) - 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/) - 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/) - 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/) - Irregular rate or rhythm of the heartbeat.
- [Bicitra](https://www.mitoaction.org/glossary/bicitra/) - A medicine used to make urine less acidic.
- [BiPAP Machine](https://www.mitoaction.org/glossary/bipap-machine/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - 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/) - An antioxidant that helps replenish Vitamin E.
- [Ankylosing Spondylitis](https://www.mitoaction.org/glossary/ankylosing-spondylitis/) - 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/) - 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/) - Used to or tending to inhibit cell growth.
- [Antispasmodic](https://www.mitoaction.org/glossary/antispasmodic/) - Capable of preventing or relieving spasms or convulsions.
- [Addison's Disease](https://www.mitoaction.org/glossary/addisons-disease/) - 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/) - It is the result of a part of the retina called the macula is damaged.
- [Alpers Disease](https://www.mitoaction.org/glossary/alpers-disease/) - 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/) - A member of the vitamin E family.
- [Amniotic fluid](https://www.mitoaction.org/glossary/amniotic-fluid/) - The fluid that surrounds a baby during pregnancy.
- [Amyotrophic lateral sclerosis](https://www.mitoaction.org/glossary/amyotrophic-lateral-sclerosis/) - 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/) - Antibodies that cause disease by mistakenly attacking healthy cells and tissue.
- [Abdominal bruit](https://www.mitoaction.org/glossary/abdominal-bruit/) - 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/) - 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/) - PVC
- [Pyruvate levels](https://www.mitoaction.org/glossary/pyruvate-levels-2/) - The output of the metabolism of glucose known as glycolysis.
- [Pulse Ox](https://www.mitoaction.org/glossary/pulse-ox/) - Pulse oximeter: A device used to measure arterial blood oxygenation.
- [Pantothenic](https://www.mitoaction.org/glossary/pantothenic/) - 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/) - OTD
- [Newborn screening panels](https://www.mitoaction.org/glossary/newborn-screening-panels-2/) - NBS, newborn screening
- [Nonspecific symptoms](https://www.mitoaction.org/glossary/nonspecific-symptoms-2/) - Something that doesn't point to one specific cause.
- [Nasogastric tube](https://www.mitoaction.org/glossary/nasogastric-tube/) - NG tube
- [Myalgic encephalomyelitis](https://www.mitoaction.org/glossary/myalgic-encephalomyelitis/) - chronic fatigue syndrome, ME/CFS
- [Multifactorial causes](https://www.mitoaction.org/glossary/multifactorial-causes-2/) - Caused by many things.
- [Mutations](https://www.mitoaction.org/glossary/mutations-2/) - genetic variant, genetic change
- [Mitochondrial factors](https://www.mitoaction.org/glossary/mitochondrial-factors-2/) - Changes in a part of the cell called the mitochondria.
- [Methylenetetrahydrofolate Reductase](https://www.mitoaction.org/glossary/methylenetetrahydrofolate-reductase/) - MTHFR
- [Irritable Bowel Syndrome](https://www.mitoaction.org/glossary/irritable-bowel-syndrome/) - IBS
- [Implantable cardiac defibrillators](https://www.mitoaction.org/glossary/implantable-cardiac-defibrillators/) - ICD
- [Gastrointestinal](https://www.mitoaction.org/glossary/gastrointestinal-2/) - GI
- [Gastroesophageal Reflux disease](https://www.mitoaction.org/glossary/gastroesophageal-reflux-disease/) - GERD
- [Friedreich's Ataxia](https://www.mitoaction.org/glossary/friedreichs-ataxia-2/) - Friedreichs Ataxia
- [Epileptologist](https://www.mitoaction.org/glossary/epileptologist/) - A neurologist that specializes in the treatment of seizures and epilepsy.
- [Emergency protocol letter](https://www.mitoaction.org/glossary/emergency-protocol-letter-2/) - 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/) - Registered dietitian
- [Conduction Abnormalities](https://www.mitoaction.org/glossary/conduction-abnormalities/) - 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/) - CVID
- [Charcot-Marie Tooth Disease](https://www.mitoaction.org/glossary/charcot-marie-tooth-disease/) - CMTD
- [Chorionic villi](https://www.mitoaction.org/glossary/chorionic-villi-2/) - 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/) - CSF
- [Cardiopulmonary Exercise test](https://www.mitoaction.org/glossary/cardiopulmonary-exercise-test/) - CPET
- [Carnitine Palmitoyltransferase Deficiency](https://www.mitoaction.org/glossary/carnitine-palmitoyltransferase-deficiency/) - 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/) - BNP, NT-ProBNP
- [Antagonistic pleiotropy](https://www.mitoaction.org/glossary/antagonistic-pleiotropy/) - 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/) - 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/) - Antibodies that cause disease by mistakenly attacking healthy cells and tissue.

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- [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/)
- [rhabdomyoysis](https://www.mitoaction.org/tag/rhabdomyoysis/)
- [fatty acid oxidation disorders](https://www.mitoaction.org/tag/fatty-acid-oxidation-disorders/)
- [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/)
- [mito diagnosis](https://www.mitoaction.org/tag/mito-diagnosis/)
- [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/)
- [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/)

## 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/)

## Resource Type

- [Expert Series](https://www.mitoaction.org/resource_type/type-expert-series/)
- [Conference](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/)

## 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/)