Answers To Frequently Asked Questions

Basic Information About MDA

The Muscular Dystrophy Association is a voluntary health agency working to defeat neuromuscular diseases through programs of worldwide research, comprehensive services, and far-reaching professional and public health education.

MDA is the largest nongovernmental sponsor of neuromuscular disease research.

Over one million Americans are affected by neuromuscular diseases. About 250,000 have some form of MD.

Included in the neuromuscular diseases covered by MDA are nine forms of muscular dystrophy, ALS (Lou Gehrig’s disease), myasthenia gravis, spinal muscular atrophy, Charcot-Marie-Tooth disease and others.

MDA is the first nonprofit agency to be recognized by the American Medical Association with a Lifetime Achievement Award for "significant and lasting contributions to the health and welfare of humanity."

MDA was founded in 1950 (as MDAA, the Muscular Dystrophy Association of America); the first president was Paul Cohen; the goal was to raise $20,000 a year to fund research; the first grant was awarded in May 1950 to Dr. Ade Milhorat.


MDA is funded almost entirely by individual, private voluntary contributions. MDA seeks no funds from United Way or fees from those it serves.

MDA dedicates 75 cents of every dollar it spends directly to program services.

You may view our Annual Report online for more information.


MDA sends more than 4,300 kids with neuromuscular diseases to MDA summer camps each year, at cost to MDA of $525 per camper; there’s no charge to the families.

More than 75,000 visits are made each year to MDA’s 230 hospital-affiliated clinics and 30 MDA/ALS centers.

MDA awards research grants to some 400 teams of scientists and physicians worldwide.

The Association also:

·        helps buy and repair hundreds of wheelchairs, pairs of leg braces and augmentative communication devices.

·        facilitates meetings of more than 230 MDA support groups.

·        gives thousands of free flu vaccines to those affected by neuromuscular diseases.

·        conducts an ongoing public education program through its Web sites, publications, videos, seminars and media placements.

Community Programs

MDA’s 200-plus local offices across the country provide valuable emotional support as well as practical information and essential services.

The MDA Art Collection was established in 1992 to focus attention on the creative abilities of individuals with disabilities. The Collection includes some 300 works by adult artists and children, all of whom are affected by neuromuscular diseases.

MDA’s National Task Force on Public Awareness serves to advise the Association on issues of interest and importance to people with disabilities. The group consists of adults who are leaders in their communities and are affected by neuromuscular diseases in MDA's program.

Mattie J.T. Stepanek of Maryland, is MDA’s National Goodwill Ambassador.

Popular singer Billy Gilman is MDA’s National Youth Chairman.  He spearheads the efforts of teens and young adults who help MDA.

Amy Dunaway-Haney of Dayton, Ohio, is the recipient of MDA’s 2003 National Personal Achievement Award.  A teacher of high school Spanish and a counselor, Dunaway-Haney has earned several national teaching awards.  MDA’s Personal Achievement Award program recognizes extraordinary accomplishments and community service by people with neuromuscular diseases.

erry Lewis MDA Telethon

Nearly one million volunteers across the country will be involved in the Telethon over Labor Day weekend.

The 2003 Jerry Lewis MDA Telethon is the 38th annual to be held on Labor Day weekend. It will be broadcast on some 200 “Love Network” stations across the country and can be seen on the Internet at

The first national MDA Telethon was held in 1953. The Telethon has been held on Labor Day weekend since 1966.

In March 1952 Jerry Lewis and Dean Martin did the first MDA Telethon in New York only; it aired on WNBT and raised $70,000 for MDA. In December 1951, Martin and Lewis had included an appeal for funds for MDA during an appearance on NBC.

Ed McMahon is the anchor of the Telethon, and 2003 will be his 36th Telethon.

The amount of pledges actually fulfilled varies from more than 80 percent to 103 percent (due to people contributing more than they pledged).

No tickets are available to see the national Telethon live. When the show moved from Las Vegas to Los Angeles a few years ago, the number of guests had to be limited. We wish it were otherwise, but the best seat in the house is often right in front of your television screen.

Jerry Lewis and Celebrities

Jerry Lewis is MDA’s "number-one volunteer."

He receives no pay for his tireless year-round work for MDA. He is national chairman of MDA and star of the Telethon.

Other celebrities serve as Telethon co-hosts and performers. None of the celebrities on the Telethon receive any pay for their efforts.

No one knows why MDA’s number-one volunteer chooses to devote so much time to helping people with neuromuscular diseases. He feels it isn’t important why he’s involved; rather, it’s important that he’s involved.

Jerry Lewis has been involved with MDA since 1950, when he first met with Paul Cohen, MDA’s president at the time.

— Adapted from the Muscular Dystrophy Association 2003 Digital Media Kit