Advocacy Partner: Muscular Dystrophy Association
About the Muscular Dystrophy Association
MDA has been at the center of progress for people living with muscular dystrophy, ALS, and over 300 other neuromuscular conditions for 75 years. We unite researchers, clinicians, advocates, and families to speed the pace of discovery, improve access to expert care, and ensure inclusion in every aspect of life. Our mission is simple: give the people we serve the tools and opportunities to live longer, more independent lives.
Muscular Dystrophy Association supports research, care, and advocacy for Charcot-Marie-Tooth.
For support, guidance, and resources please visit: MDA Resource Center
By Phone:Â 1-833-ASK-MDA1 (1-833-275-6321)
By Email:Â [email protected]
Resources
MDA Resource Center
MDA’s Resource Center is a hub for questions and assistance for all things MDA, support, events, and more.
Durable Medical Equipment (DME) Grant Program
MDA is proud to offer the Durable Medical Equipment (DME) Grant to help children and adults living with neuromuscular diseases get the equipment they need to live more independently and comfortably. We know how expensive and hard it can be to access the right equipment. This program helps reduce the cost of items like mobility aids, lift chairs, and more, giving families extra support and peace of mind.
MDA Gene Therapy Support Network
MDA has invested over $125M in the development of gene therapy (GTx) for neuromuscular diseases over the past 20 years. With new gene therapy drug approvals in the pipeline, MDA is here to facilitate access and to provide support and education to the neuromuscular disease community.
MDA Community Education
MDA’s Community Education programs aim to support every person and family living wtih neuromuscular disease through the delivery of relevant, responsive, and actionable content from leading experts in the field. These programs focus on navigating critical life transitions, increasing disease understanding, and supporting access to independence.
MDA Summer Camp
At MDA Summer Camp, every camper finds a place to belong in a community rooted in inclusion, friendship, and fun. Here, kids and young adults with neuromuscular disease grow in confidence as they take on new adventures, make lifelong friends, learn to self-advocate, and discover just how much they can do.
Upcoming events
6th Annual Boston Muscle Team Golf Outing
MDA Engage – Hershey, PA
Sam Osborn Memorial Golf Tournament
Muscle Walk of Minnesota
About Advocacy Partners
The information above is provided by our partner. Learn more about our advocacy partners here.
Recent Posts
- Italian pharma gets LEMS drug Firdapse, enters US market in $4B deal May 20, 2026
- A solo flight is a step toward independence for our daughter May 18, 2026
- Normal muscle strength test results may hide LEMS, delay diagnosis April 15, 2026
- Rediscovering my love of reading now that my daughter is doing well April 13, 2026
- No evidence of cancer found in rare case of older man with LEMS March 18, 2026
- After 6 years, my daughter changed her LEMS treatment plan March 16, 2026
- In first reported case, using efgartigimod helps manage LEMS February 18, 2026
- Community support is the driving force behind growing association February 16, 2026
- Study suggests LEMS is often missed in people with small cell lung cancer January 21, 2026
- A girl and her dog jog for home, offering hope that things will get better January 12, 2026
