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 over 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.
For support, guidance, and resources please visit: MDA Resource Center
By Phone: 1-833-ASK-MDA1 (1-833-275-6321)
By Email: [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.
About Advocacy Partners
The information above is provided by our partner. Learn more about our advocacy partners here.
Muscular Dystrophy Association News
Discussion
A new gene therapy approach safely restored the production of emerin, the protein missing in people with X-linked Emery-Dreifuss muscular dystrophy (EDMD), in both a mouse model and human muscle cells, according to a study. Although the preclinical study could not assess the gene therapy’s impact on muscle function,…
Discussion
Dyne Therapeutics‘ experimental therapy zeleciment basivarsen (z-basivarsen) may help improve multiple measures of physical function in people with myotonic dystrophy type 1 (DM1), new clinical trial data suggest. “What’s encouraging is that we observed improvements across multiple measures, including strength and functional assessments,” Doug Kerr, MD, PhD, chief…
Discussion
Mental health problems such as anxiety and depression are common for people with muscular dystrophy, affecting most individuals in the community, according to a new survey. The survey was carried out by Bionews, the parent company of Muscular Dystrophy News. Survey results indicate that loneliness, regret, and…
Discussion
Lily Sander will never forget what it was like to meet other people with neuromuscular diseases the first time she attended Muscular Dystrophy Association (MDA) Summer Camp. Living with Charcot-Marie-Tooth disease, Sander had met only one or two other people with neuromuscular diseases in her city. She was…
Discussion
The gene therapy Elevidys (delandistrogene moxeparvovec-rokl), approved in the U.S. to treat people ages 4 and older with Duchenne muscular dystrophy (DMD), can be safely administered to boys with DMD as young as 2 years old, new data show. A new analysis, which covered nine boys with DMD…
Discussion
Boys and young men with Duchenne muscular dystrophy (DMD) who switched from a placebo to the experimental cell therapy deramiocel as part of a clinical trial showed smaller declines in measures of upper limb function after making the change, new data show. Data from the study, which included…