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