Muscular Dystrophy Association - Overview

Overview

MDA is most famous for its long-running nationwide telethon it holds on Labor Day each year. Debuted in 1966, it was previously hosted by actor and comedian Jerry Lewis, who has supported the MDA, serving as its national chairman since its inception in 1950. In 2008, the annual Labor Day Telethon raised a record USD$65,031,393. In 2005, the MDA made the unprecedented decision to pledge $1 million of the Telethon's money raised to Hurricane Katrina disaster relief, making the donation specifically to the Salvation Army (though the Telethon also urged viewers to give to the American Red Cross). Originally broadcast for up to 21½ hours from 1966 to 2010, the event will be cut back to six hours in 2011. The 2011 edition of the telethon was originally announced to have been Lewis' last as host, with him continuing his role as MDA's National Chairman; however, on August 3, 2011, the MDA announced that Lewis resigned as host and chairman, due to circumstances not revealed.

Lewis' support has been so ironclad over the years that children and adults assisted by MDA are referred to as Jerry's Kids. Each year (sometimes for multiple-year stretches), one of these children is chosen to be the MDA's "National Goodwill Ambassador", which, until the 1980s, were referred to as "poster children". The MDA's first poster child was Jolene Kay Worley, in 1955; she lived through 1993. The most well-known of these was Mattie Stepanek, who was National Goodwill Ambassador from 2002 until his 2004 death; he was notable for his Heartsongs series of poetry books.

Every summer, for one week, hundreds of children that have been diagnosed with Muscular Dystrophy are able to attend a camp designated for only them. There is a one counselor to one camper ratio and the entire week the children, ages 6-17, are paired with an adult volunteer. They get to participate in fun activities and games and stay overnight from Sunday to Saturday. The camps are set up regionally and are different weeks throughout the months of June and July. The entire camp staff are volunteer members and are required to interview and apply with good recommendations. The cost of the camp for the campers, the children diagnosed with Muscular Dystrophy, is covered by the many fundraisers the MDA organization do each year.

The MDA and Jerry Lewis have been criticized by disability rights activists for their tendency to paint disabled people as, these advocates say, "pitiable victims who want and need nothing more than a big charity to take care of or cure them." Critics argue that focusing the public's attention on medical cures to "normalize" disabled people fails to address issues like providing accessible buildings and transportation, and employment opportunities and other civil rights for the disabled. The Telethon has recently been targeted by disability activists who engage in street protests in front of the Telethon's location during its broadcast.