Ashley Burkman shares how testifying for Medicaid highlighted the daily reality of CMD caregiving and how honest storytelling can drive advocacy and change.

Cure CMD joined rare disease advocates in Washington, DC for Rare Disease Week 2026, meeting with lawmakers to raise awareness of congenital muscular dystrophy and the urgent need for research support.

In August, seven CMD advocates from Wisconsin, Ohio, and New York joined Rare Across America, connecting with Members of Congress to spotlight critical issues affecting the rare disease community. Discussions focused on restoring the Rare Pediatric Disease PRV Program, improving Medicaid access for kids needing out-of-state care, and protecting NIH and FDA research funding. Advocates shared personal stories and called for bipartisan support to ensure progress in treatment dev