MitoAction
Support, Education, Outreach and Advocacy for Children and Adults Living with Mitochondrial Disease
Join MitoAction CEO, Kira Mann, Barth Syndrome Foundation CEO, Emily Milligan, and Stealth BioTherapeutics CEO, Reenie McCarthy for a discussion as we navigate the FDA's most recent update on the application for elamipretide, a crucial treatment for the Barth syndrome community.
When a genetic variant is shared by only a handful of individuals worldwide, what does it mean for diagnosis, treatment, and research? In this session, we’ll explore the complexities of interpreting ultra-rare genetic mutations, especially in the context of mitochondrial disease. How do clinicians and geneticists determine whether a novel or rare variant is pathogenic? What frameworks are used […]
Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive […]
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.
Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive […]
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 […]
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 […]
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 […]
Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, […]
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 […]
Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, […]
