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Researchers Discover Link Between Protein and Synapse Development in Dystroglycanopathy
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.
Angela Yeager
Jul 81 min read


FDA Announces first Platform Technology Designation: Implications for CMD’s Path to Clinical Trials
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.
Gustavo Dziewczapolski
Jun 273 min read


CMD Advocacy Updates: Urge Your Senators to Reject H.R.1 Now
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.
Lani Knutson
Jun 252 min read


Father’s Day: CMD Dads in Their Own Words
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.
Cure CMD
Jun 135 min read


Cure CMD in Attendance: Q1 2025 Scientific Conference Highlights
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!
Gustavo Dziewczapolski
May 63 min read


CMD Moms Share Their Journeys This Mother’s Day
In honor of Mother’s Day 2025, Cure CMD asked five incredible mothers to reflect on caregiving, resilience, and the unexpected joys of...
James Immekus
May 17 min read


Community Member Creates Children’s Book Featuring Characters Living With CMD
CMD Community Member, Ashley Burkman, has written a new book, “Move,” featuring characters living with congenital muscular dystrophy.
Kelly Berger & Avery Roberts
Apr 302 min read


Cure CMD’s Kelly Berger Spotlighted by University of Kentucky for Her Advocacy in Rare Disease and Disability Communities
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.
James Immekus
Apr 301 min read
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