About Us
Our mission is to empower people living with neuromuscular diseases to live longer, more independent lives.
MDA Statement to the Duchenne Muscular Dystrophy (DMD) Community
New York, July 22, 2025 – The Muscular Dystrophy Association has been notified of Sarepta Therapeutics’ announcement yesterday that it has temporarily paused all U.S. shipments of ELEVIDYS, including for ambulatory patients. According to Sarepta, this pause is intended to allow for discussions with the U.S. Food and Drug Administration (FDA) regarding potential updates to the treatment’s label.
We know how significant and personal this news is for families who were preparing to receive treatment. We also understand the uncertainty this may create for families navigating the complex landscape of gene therapy options for Duchenne muscular dystrophy (DMD).
MDA remains dedicated to our belief in the transformative potential of gene therapy to change the course of neuromuscular diseases. At the same time, we recognize that access to any therapy must be guided by rigorous scientific evidence, regulatory oversight, and a consistent and abiding commitment to patient safety.
We urge families impacted by this development to speak directly with their MDA Care Center team. Families may also reach out to the MDA Resource Center for further assistance at 1-833-ASK-MDA1 (1-833-275-6321) or ResourceCenter@mdausa.org.
Media contact press@mdausa.org.
About Muscular Dystrophy Association
Muscular Dystrophy Association (MDA) is the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and over 300 other neuromuscular conditions. For 75 years, MDA has led the way in accelerating research, advancing care, and advocating support and inclusion of families living with neuromuscular disease. MDA's mission is to empower the people we serve to live longer, more independent lives. To learn more visit mda.org and follow MDA on Instagram, Facebook, X, Threads, Bluesky, TikTok, LinkedIn, and YouTube
About Muscular Dystrophy Association’s 75th Anniversary
In 2025, the Muscular Dystrophy Association proudly marks 75 years legacy, impact and momentum in the fight against neuromuscular diseases. Since our founding, MDA has been at the forefront of research breakthroughs, providing access to comprehensive care, and championing the rights of people living with muscular dystrophy, ALS, and over 300 other neuromuscular diseases. This milestone has been made possible by generations of dedicated support from people living with neuromuscular disease, their families, researchers, clinicians, volunteers, and donors—who boldly drive our mission forward. As we look ahead, we remain committed to honoring this legacy, building on the impact we’ve made together, and continuing our momentum toward transformative progress for people living with neuromuscular disorders. Learn more at MDA75.org.
