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About Us

We're here to transform the lives of people affected by neuromuscular disease.

Our Impact

Families are at the heart of MDA's mission. We wake up every morning to create more hope and answers for families living with muscular dystrophy and related neuromuscular diseases that take away physical strength and mobility. We fund groundbreaking research for promising treatments and provide families with the highest quality care from the best doctors in the country.

Here are the ways we’re helping achieve these goals so families can live longer and grow stronger:

Innovations in Science

At MDA, we take a big-picture perspective across the full spectrum of neuromuscular diseases to uncover breakthroughs that accelerate treatments and cures. The power in our research approach is that we can often apply learnings from one disease to achieve progress in others to bring urgently needed answers to our families.

Here are some of our current highlights:

  • Research: MDA is the largest source of funding for neuromuscular disease research outside the federal government and has committed more than $1 billion in funding since its inception.
  • Treatments: Research we have supported is directly linked to approved, life-changing therapies across multiple neuromuscular diseases.
  • Technology: Our MOVR platform is the first and only data hub that uniquely aggregates healthcare, genetic, and patient-reported data, transforming health outcomes and drug development in neuromuscular disease.

Innovations in Care

We know that early diagnosis, highly specialized care and access to promising clinical trials help ensure the best possible outcomes for individuals and families facing muscular dystrophy, ALS and related life-threatening diseases. That’s why MDA is here to provide care for kids and adults from day one. Our MDA Care Centers offer families best-in-class, comprehensive care from a wide variety of health care specialists at one location on the same day, while our trained information specialists and educational resources are available to offer guidance and support through every step of the journey.

Here are some of our current highlights:

  • MDA Care Centers: We support the largest network of care centers providing best-in-class comprehensive clinical care at top health care institutions.
  • MDA Resource Center: Our national Resource Center is staffed by a dedicated team of knowledgeable specialists offering one-on-one support at no cost.
  • MDA Summer Camp: Every year thousands of children and young adults learn vital life skills and independence at MDA Summer Camp and other recreational programs at no cost to families.

Professional Education

MDA offers a series of educational programs developed for clinicians and specialists who manage and treat individuals with neuromuscular disease. The Medical Education team has partnered with the country’s top thought leaders and experts to create a series of educational programs including CME certified grand round webinars, peer-to-peer educational slide decks and case studies.

Here are some of our current highlights:

  • MDA Grand Rounds Webinars: Featuring expert thought leaders across neuromuscular diseases, the MDA Grand Rounds Webinars include best practices and practical clinical consideration in the management and care of individuals with neuromuscular disease.
  • Considerations in Care Case Studies: These case studies explore multidisciplinary clinical decision making through the lens of in-depth patient experiences living with various neuromuscular diseases.

Community Education

MDA offers programs and resources to help educate our community about the fundamentals of neuromuscular disease.

Here are some of our current highlights:

  • MDA Engage Community Education Seminars: These day-long educational seminars empower individuals and families with knowledge and resources around neuromuscular disease in general.
  • MDA Engage Disease Specific Symposia: These one-day educational events empower individuals and families with knowledge and resources specific to a single diagnosis.

Advocacy

MDA is dedicated to advocating for national policies and programs that support families with neuromuscular diseases by accelerating the development of therapies and cures, facilitating early diagnosis and treatment from day one, ensuring access to critical support, and promoting policies that safeguard independence for people living with disabilities. In addition to staff, MDA grassroots advocates make sure lawmakers in Washington, DC hear their voices by acting online, meeting with lawmakers virtually, engaging with social media, and sharing their stories with key decisionmakers. Together with MDA’s network of advocates, families, volunteers, and partners, we ensure that the collective voice of our community is heard on Capitol Hill.