MDA Fact Sheet

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What is MDA?

Founded in 1950, the Muscular Dystrophy Association today is one of the world’s leading nonprofit health organizations, funding research, and health care and support services covering more than 40 neuromuscular diseases affecting more than 1 million Americans.

Active in local communities around the country, MDA is dedicated to finding treatments and cures for neuromuscular diseases, and to supporting the individuals and families affected by these diseases.

What does MDA cover?

The majority of diseases under MDA’s umbrella are caused by genetic factors. All result in progressive muscle weakness. Symptoms can range from mild muscle weakness to complete paralysis of all voluntary muscles, including those used for breathing and swallowing. Among these diseases, the age of onset varies from birth to adulthood, and life span after diagnosis can be as short as a year or as long as several decades.

For detailed information about each of the neuromuscular diseases in MDA's program, visit the MDA Disease Directory.

What does MDA do?

Worldwide research

MDA annually funds more than 250 research projects around the world. Thanks to MDA-funded research:

• disease-causing genetic mutations have been identified for most of the diseases in its program;
• clinical trials of potential therapies are under way in Duchenne and Becker muscular dystrophies, spinal muscular atrophy, ALS and other diseases;
• the largest drug discovery project for ALS to date is being conducted at the ALS Therapy Development Institute (ALS TDI);
• optimal care guidelines have been developed for several rare conditions; and
• a lifesaving enzyme replacement therapy has been developed for Pompe disease.

Health care and support services

MDA’s comprehensive services program helps individuals and their families meet the challenges imposed by chronic, progressive muscle diseases through:

• a national network of 200 medical clinics staffed by experts in neuromuscular diseases, including 43 clinics designated as MDA/ALS centers;
• local support groups and events for individuals and families;
• assistance locating, obtaining and repairing needed durable medical equipment; and
• online opportunities to connect, share and learn through online communities, care coordination tools and webinars.

Summer camps

Each year, thousands of youngsters ages 6 to 17 attend a free weeklong accessible summer camp session where they get to be “just kids.”

Public and professional health education

Online and in print, MDA offers a vast library of information about research, clinical trials, health care and daily living strategies. MDA also regularly convenes international scientific meetings and conferences for researchers and MDA clinic directors.

Advocacy

MDA represents the needs of the neuromuscular disease community in matters of public policy and research advancement, and facilitates involvement in these areas by the people it serves.

Community programs

Public awareness programs such as the MDA Art Collection and Personal Achievement Award demonstrate that disability is no barrier to creativity and service.

Who supports MDA?

Designated a “Top-Rated Charity” by the American Institute of Philanthropy, MDA is the first nonprofit to receive a Lifetime Achievement Award from the American Medical Association “for significant and lasting contributions to the health and welfare of humanity.” MDA spends 77 cents of every dollar on its research, services and information programs.

MDA’s programs are supported nationally and in local communities by businesses, associations, organizations, and the care and dedication of countless individual volunteers.