February 6, 2026

Cardiac Care for Female Carriers

While February may be known for Valentine’s Day candy and flowers, it is also American Heart Month!  Within the dystrophinopathy community, keeping heart health front and center is especially critical. It is estimated that around…

Learn More

December 16, 2025

Historic Victory: Duchenne Added to the Recommended Uniform Screening Panel (RUSP)

Today marks a monumental victory for the Duchenne community. The U.S. Department of Health and Human Services (HHS) has officially added Duchenne to the Recommended Uniform Screening Panel (RUSP)—the national list of conditions recommended for…

Learn More

December 5, 2025

Honoring Every Journey in Duchenne and Becker: Advancing Therapies, Access, and Care For All

For more than three decades, Parent Project Muscular Dystrophy (PPMD) has been committed to bringing therapies closer to, and improving care for, every person living with Duchenne and Becker muscular dystrophy. The Duchenne and Becker…

Learn More

November 25, 2025

PPMD Launches New Study to Understand Patient and Caregiver Treatment Preferences

PPMD has a long history of working alongside our community to document treatment preferences and share those insights with regulatory authorities such as the FDA. Through town halls, listening sessions, and conversations at community events,…

Learn More

November 19, 2025

Avidity Biosciences Announces U.S. Managed Access Program for del-zota

Avidity Biosciences, Inc. has announced its Managed Access Program (MAP) for delpacibart zotadirsen (del-zota) for eligible individuals living with Duchenne who are amenable to exon 44 skipping in the United States. MAPs allow a limited…

Learn More

November 18, 2025

Becker Muscular Dystrophy Series – Part 2: Cardiopulmonary Care

The second session in PPMD’s Becker Muscular Dystrophy webinar series focused on cardiopulmonary care. Our clinical experts reviewed what every person living with Becker and their families should know about care for the heart and…

Learn More

November 14, 2025

FDA Approves New Safety Warning and Revised Indication for ELEVIDYS

Today the FDA announced a significant update to the labeling and indication of ELEVIDYS for the treatment of individuals living with Duchenne following reports of death based on acute liver failure (ALF) in non-ambulatory patients…

Learn More

November 10, 2025

Tips for Smooth Holiday Travel

The holidays are a special time to connect with family and friends, and for many, that involves travel. To help make your journey a little easier, PPMD has gathered some helpful travel tips and resources!…

Learn More

November 6, 2025

Advancing Brain and Behavior Care in Dystrophinopathy

Recently, PPMD led a meeting with experts from across the US and Europe to discuss the evolving understanding of brain and behavior implications in individuals with dystrophinopathy. The two day workshop, led by Drs. Molly…

Learn More

November 5, 2025

Understanding Fat Embolism Syndrome (FES) and Protecting Bone Health

PPMD recently hosted a webinar about Fat Embolism Syndrome (FES), covering what FES is, what symptoms to watch for, and how to help keep people with dystrophinopathy safe and healthy. Four clinical experts shared practical…

Learn More