Events
Calendar of Events
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1 event,Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive […] |
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2 events,We are thrilled to be collaborating with The POLG Foundation for this wonderful support call series! 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. |
1 event,Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive […] |
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1 event,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 […] |
1 event,Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive […] |
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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 […]
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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. |
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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 […] |
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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 […]
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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 […] |
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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 […] 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. |
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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 […]
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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 […] |
1 event,Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive […] |
11 events,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, […]
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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 […]
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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 […] |
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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 […]
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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, […] |
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1 event,Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive […] |
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