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.

Over 340 attendees gathered in Philadelphia for the 2025 Scientific & Family Conference, uniting families, clinicians, and researchers to share stories, advance care, and spark new collaborations. Highlights included 60 sessions, Kids Camp, young adult meetups, and the Scientific Symposium.

Cure CMD’s Creative Contest celebrates its 5th year of providing an outlet for people living with CMD and other neuromuscular conditions to promote the creative expressions of their stories through visual, physical, or performance art.