I'm running a half marathon in Portland Maine to raise awareness and funds for the Barth Syndrome Foundation. Barth Syndrome is a rare, life-threatening genetic disorder (mutations in the tafazzin gene that controls mitochondrial metabolism) that affects heart function, muscle development, and immunity, primarily in young boys. Because it’s so rare, research and support are often underfunded but we can help change that. Every step I take is for the children and families affected by Barth Syndrome. By supporting Barth Syndrome research, we’re not only helping a rare disease we’re unlocking knowledge that can lead to breakthroughs for many other mitochondrial diseases.
