MitoAction
Support, Education, Outreach and Advocacy for Children and Adults Living with Mitochondrial Disease
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 donors, we […]
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.
Spend an hour with MitoAction on Fridays for our weekly support group calls!Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized […]
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 […]
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 individualized […]
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. Stacy’s […]
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!
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, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized […]
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.
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 […]
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.
Spend an hour with MitoAction on Fridays for our weekly support group calls!Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized […]
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 […]
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.
Spend an hour with MitoAction on Fridays for our weekly support group calls! Our support call creates a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive […]
