Getting the Mito Community Research Ready

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, Rich Elles, Director of Patient Advocacy & Industry Engagement will represent AllStripes and Kasey Woleben, Founder and Sophia Zilber, Board Member will represent Cure Mito Foundation.

About the Organizations

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 thousands of patients and families. MitoAction’s mission is to improve the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, clinical research initiatives and by granting wishes for children affected by mitochondrial disease.

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 refused to accept this as a final answer. In 2021, after successfully blazing the trail for SURF1 gene therapy at UTSW we decided to expand our efforts and changed the name of our foundation from the Cure SURF1 Foundation to the Cure MITO Foundation. Our primary focus is advancing research towards a cure for Leigh syndrome and eventually for mitochondrial disease as a whole. A successful outcome will mean not only hope for our own children, but also life-saving treatments for future generations impacted by this disease.

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 research platform dedicated to rare diseases, AllStripes makes it easy for patients to contribute to new treatment studies from home. We do the work to collect and analyze your de-identified medical records to help power faster, better drug development for your condition. The name AllStripes was inspired by the official symbol for the rare disease community, the zebra. When we come together and learn from each other’s experiences we can push for better treatments across all rare conditions.