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

It Started With an Idea I’m Angela, and I live with SELENON-Related Myopathy. As a member of the CMD community, I have had the privilege of being connected to others living with similar neuromuscular diseases. Being part of this community has continually reminded me that while CMD can feel isolating at times, we are never truly alone. In 2017, I attended an MDA-sponsored premiere of I’ll Push You , a documentary that follows two best friends, Justin and Patrick. Justin has a

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

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.