We're thrilled to share that after several years following Cure CMD's submission to the Social Security Administration requesting the...

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.

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.

Researchers at the Wright Lab at OHSU’s Vollum Institute have discovered that the protein Dystroglycan is vital for brain connectivity, revealing a key neurological role in Dystroglycanopathy and opening new pathways for CMD research and treatment.

The FDA’s first Platform Technology Designation marks a major step forward for rare disease treatments, allowing reuse of key therapy components across related conditions. This breakthrough could accelerate CMD therapies, but Cure CMD needs your support to keep the momentum going.

Learn how Cure CMD is fighting harmful legislation like the OBBBA, NIH funding cuts, and threats to Medicaid through strategic advocacy and rare disease policy action. Discover how you can help protect access to care, advance research, and make your voice heard.

This Father’s Day, Cure CMD celebrates the strength, insight, and quiet resilience of dads raising children with congenital muscular dystrophy. In this special blog a group of CMD dads reflect on what they’ve learned, how they stay grounded, and the unique connections they share with their children.

From shaping care guidelines in the Netherlands to tackling gene therapy challenges at the MDA Summit, Cure CMD is driving progress in research and care. Join us at the 2025 SciFam Conference this August in Philadelphia—registration is open!

In honor of Mother’s Day 2025, Cure CMD asked five incredible mothers to reflect on caregiving, resilience, and the unexpected joys of...

CMD Community Member, Ashley Burkman, has written a new book, “Move,” featuring characters living with congenital muscular dystrophy.

Cure CMD’s Community Engagement Manager and tireless advocate for the rare disease and disability communities, was recently featured by her Alma mater's campus magazine, the University of Kentucky’s UKNow.