MDA Muscular Dystrophy Association Rare Diseases


MDA is committed to transforming the lives of people affected by muscular dystrophy, ALS and related neuromuscular diseases through innovations in science and innovations in care.

As the largest source of funding for neuromuscular disease research outside of the federal government, MDA has committed more than $1 billion since inception to accelerate the discovery of therapies and cures. Research supported is directly linked to life-changing therapies across multiple neuromuscular diseases. MDA’s MOVR is the first and only data hub that aggregates clinical, genetic and patient reported data for multiple neuromuscular diseases to improve health outcomes and accelerate drug development.

MDA supports the largest network of multidisciplinary clinics providing best in class care at more than 150 of the nation’s top medical institutions. MDA's Resource Center serves the community with one-on-one specialized support, and offers educational conferences, events, and materials for families and healthcare providers. Each year thousands of children and young adults learn vital life skills and gain independence at summer camp and through recreational programs, at no cost to families.

How MDA started...

In June 1950, Paul Cohen, a prominent New York business leader living with muscular dystrophy, invited a group of individuals to meet in his Rye, New York, office. Each had a personal connection to muscular dystrophy, and the gathering focused on the urgent need to raise funds to advance research seeking treatments and cures for muscular dystrophy. The group — so vested in the fight against neuromuscular diseases — formed the organization that became the Muscular Dystrophy Association. That year, MDA’s first research grant for $1,500 was awarded to neuromuscular disease pioneer Ade. T. Milhorat, M.D.

One of MDA’s first goals when it started in 1950 was to recruit celebrities who could help promote the newly created Muscular Dystrophy Association to the American public. Founder Paul Cohen met with renowned comedians and entertainers Dean Martin and Jerry Lewis to urge them to become champions for the cause.

In 1971, MDA created a “Love Network” of stations that in 1971 facilitated the nation’s first networked telethon. Throughout the decades, the legendary Labor Day broadcast originated from different locations including New York, Las Vegas and Hollywood. The most successful fundraising event in the history of television, the show, with Lewis as its iconic host and with help from a legion of top celebrities and entertainers, raised nearly $2 billion during the years.

On May 1, 2015, MDA made the difficult decision to end its historic telethon tradition. After careful consideration and analysis and as families and supporters began looking for new ways to support and get involved with the organization, MDA evolved with the times to create new opportunities through social media and other digital channels to inspire the nation in support of the fight against muscular dystrophy.

Meet all of the partners who support MDA today here.

MDA Muscular Dystrophy Association Thank You Rare Diseases