Recognizing Our Champions of Progress : Home : Barth Syndrome Foundation

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March 5, 2026

Recognizing Our Champions of Progress

byThe Barth Syndrome Foundation

During Rare Disease Week 2026, the Barth Syndrome Foundation (BSF) was proud to recognize 12 Members of Congress as Champions of Progress for their unwavering advocacy on behalf of individuals and families with Barth Syndrome. These lawmakers are acting to advance policies that strengthen the rare disease community, increase research funding, and drive regulatory progress for life-changing therapies.

Many leaders supported the 2025 approval of FORZINITY™ (elamipretide), the first approval of a treatment for Barth syndrome and the only treatment of its kind. Congressional leaders were particularly instrumental in signing a 2025 bipartisan letter to the Food and Drug Administration (FDA) urging immediate action on elamipretide following bureaucratic delays.

As Emily Milligan, Chief Executive Officer of BSF shared, "Our Champions of Progress understand the urgency of our work, and we are grateful for their commitment to ensuring that the voices of those affected by Barth syndrome are heard."

Each of our Champions received a deck prism — a keepsake symbolizing light and guidance. Once used in wooden sailing ships to illuminate dark spaces below deck, these prisms captured sunlight and directed it where it was needed most. It is a fitting tribute from our community.

The 2026 Champions of Progress

Sen. Joni Ernst (IA-R)
Sen. Roger Marshall (KS-R)
Rep. Sheri Biggs (SC-3-R)
Rep. Kat Cammack (FL-3-R)
Rep. James Clyburn (SC-6-D)
Rep. Andrew Clyde (GA-9-R)
Rep. Jason Crow (CO-6-D)
Rep. Brian Fitzpatrick (PA-8-R)
Rep. Brian Jack (GA-3-R)
Rep. George Latimer (NY-16-D)
Rep. Lucy McBath (GA-6-D)
Rep. Terri Sewell (AL-7-D)

The Barth Syndrome Foundation joins hundreds of advocates and patient organizations in urging Congress to advance policies that accelerate medical breakthroughs, expand access to rare disease treatments, and strengthen federal rare disease programs and research funding. We remain committed to partnering with lawmakers and federal agencies to create meaningful, lasting change for the Barth syndrome community.

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