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Collagen VI-related dystrophy (COL6-RD) is a rare genetic muscle disease caused by defects in one of three genes that form a triple helix protein (collagen VI) found in the extracellular…

MDA’s Ambassadors are pivotal to our mission: empowering people living with neuromuscular disease to live longer, more independent lives. We strive to fulfill our mission through care, research, and advocacy.…

The MDA MOVR program has paired with Mitsubishi Tanabe Pharma America, Inc. (MTPA) to collaborate on a remote observational research study focusing on Amyotrophic Lateral Sclerosis (ALS). The newly developed…

Researchers at PathMaker Neurosystems Inc. are seeking individuals living with amyotrophic lateral sclerosis (ALS) to participate in a feasibility study to evaluate the safety and tolerability of an investigational neuromodulation…

From major legislative and regulatory progress on crucial issues, to our in-person Hill Day in Washington, D.C., 2023 has truly been a landmark year for MDA advocates. Because of your…

MDA Events bring community members, advocates, volunteers, sponsors, and MDA staff together as they gather for a cause and celebrate community. In-person events offer attendees and volunteers a powerful opportunity…

A guide to diagnostic tests most commonly used when there are symptoms of a neuromuscular disease.

Learn when a clinical or genetic diagnosis is better for diagnosing muscular dystrophy and other neuromuscular diseases.

Don Talley is a wheelchair user who has flown over one million miles. In March of 2023, I boarded a United flight from San Diego, California to Denver, Colorado. It…

Hello MDA Families and Friends, As we reflect on the closing of 2023, our hearts are filled with immense pride, gratitude, and a deep sense of connection with each of…