WASHINGTON, D.C. – During Rare Disease Week on Capitol Hill (February 24-26, 2025), the Barth Syndrome Foundation (BSF) recognized 16 members of Congress as “Champions of Progress” for their unwavering advocacy on behalf of individuals and families affected by Barth syndrome. These lawmakers have demonstrated leadership in advancing policies that support the rare disease community, improve research funding, and drive regulatory progress for life-changing therapies, including elamipretide for the treatment of Barth syndrome. 

Dr. Simon J Conway, PhD is a Professor in the Herman B Wells Center for Pediatric Research at Indiana University School of Medicine, Indianapolis.