About Us

Our Impact

Being diagnosed with a neuromuscular disease can bring fear, frustration, and far too many unknowns. MDA brings something else: access to expert care, science that moves theory to therapy, and programs built to support life beyond the diagnosis.

Here’s how MDA makes a difference that matters.

Changing What Comes Next

A diagnosis used to mean more questions than answers. Today, because of MDA-funded research, more than 25 treatments for neuromuscular disease have been approved by the FDA in just the last decade — and more are on the horizon. Families now hear about options, not just obstacles.

What it means: Life expectancy, treatment options, and day-to-day care have all improved. Kids who once had no available therapies are now accessing gene therapy in early childhood. Adults are participating in clinical trials that didn’t exist five years ago.

Behind it: $1.1 billion invested in research. But it’s not the dollars—it’s the difference those dollars are making.

Making Expert Care Easier to Reach

Getting to the right specialists used to mean months of waiting or long-distance travel. MDA’s nationwide Care Center Network, housed at over 150 of the nation’s most prestigious medical centers, brings together top experts in one coordinated visit: neurologists, cardiologists, pulmonologists, therapists - all under one roof.

What it means: People are receiving earlier diagnoses, faster access to care, and more personalized treatment plans. Families no longer have to navigate a complex system alone to get the care they need.

Behind it: MDA supports over 150 Care Centers across the country, making expert care accessible to more than 70,000 people each year.

Turning Isolation Into Connection

Living with a rare disease can be isolating. MDA creates spaces—virtual and in person—where people find connection, confidence, and community.

What it means: A child who’s never met anyone else with their diagnosis goes to MDA Summer Camp and comes home with lifelong friends. A parent overwhelmed after diagnosis finds clarity and direction after a call to the MDA Resource Center. A young adult navigating college finds belonging in a virtual peer group.

Behind it: Programs like Summer Camp, Family Getaways, Let’s Play, Peer Connections, and MDA Connect—all designed to meet people where they are and remind them they’re not alone.

Moving Policy—and Possibility—Forward

Access to gene therapy. Air travel without barriers. Newborn screening that saves lives. Protections for hard won rights and benefits. These aren’t hopes—they’re outcomes of MDA’s advocacy.

What it means: Babies with spinal muscular atrophy are now being diagnosed and treated before symptoms begin. Travelers with mobility challenges are experiencing fewer barriers to access and can travel safely and with dignity. New laws are reducing wait times for kids to access critical care.

Behind it: 13,000+ grassroots advocates and a national advocacy team pushing for smarter policy—and better lives.

Turning Data Into Actionable Progress

MDA’s MOVR Data Hub is transforming care by turning real-world clinical data into powerful tools for diagnosis, treatment, and drug development.

What it means: Researchers are bringing new therapies to trial faster. Clinicians are making more informed treatment decisions. People living with neuromuscular disease are gaining access to more precise, personalized options.

Behind it: A first-of-its-kind platform collecting clinical and genetic data across 300+ diseases, designed to close the information gap that has slowed progress for too long.

Powered by a Connected Community

Our impact isn’t just measured in milestones; it’s powered by people. Families, clinicians, researchers, advocates, and allies build momentum every day: driving clinical trials, shaping regulatory decisions, mobilizing on Capitol Hill, and creating lasting change in their own communities. There's power in our numbers, and it shows. This progress is possible because of a dedicated corps of supporters, from grassroots volunteers to partners like CITGO, the International Association of Fire Fighters (IAFF), and the National Association of Letter Carriers (NALC). Together, we're not only imagining a better future - we’re making it move faster.

Why It Matters

Because of MDA, the question is no longer “What now?”
It’s “What’s next?”

That’s impact: transforming uncertainty into action. Helping people live stronger. Investing in what’s possible—and making it a reality.