Muscular Dystrophy Association

Each year (sometimes for multiple-year stretches), a child affected by a muscle disease is chosen to be the MDA's "National Goodwill Ambassador", which, until the 1980s, were referred to as "poster children". In 1952, the MDA inaugurated Michael Danna as its first Poster Child.[24] One of the most well-known ambassadors was Mattie Stepanek, the National Goodwill Ambassador from 2002 until his death in 2004, notable for his best-selling Heartsongs series of poetry books, and his appearances on The Oprah Winfrey Show and Good Morning America. More recent National Goodwill Ambassadors have been 12-year-old Bryson Foster (2012–2013) of Concord, North Carolina, who is affected by Duchenne muscular dystrophy and 9-year-old Reagan Imhoff of New Berlin, Wisconsin.

In 1986, MDA-funded researcher Louis M. Kunkel identified the dystrophin gene, the gene for Duchenne muscular dystrophy (DMD) and Becker muscular dystrophy (BMD).[25] MDA funded the first gene therapy trial in 1999, followed by the first vector based gene therapy trial for DMD in 2006.[26]

In 2007, MDA funded Adrian R. Krainer and his colleagues at the Cold Spring Harbor Laboratory in Laurel Hollow, New York for the early-stage development of nusinersen. Nusinersen became FDA approved in 2016 as the first treatment for spinal muscular dystrophy (SMA).[27]

As of 2018, MDA had a total funding commitment of more than $58 million distributed among 312 research grants.[28] By 2019, MDA supported 252 research projects worldwide, totaling a funding commitment of more than $66 million.[29]

Since 1954, MDA has partnered with the International Association of Fire Fighters (IAFF) for the annual Fill the Boot Drive, where firefighters around the country ask those passing to donate to MDA via one of their boots. In 2016, over 100,000 firefighters from 1,507 different IAFF locals participated, raising over $24 million.[30]

Debuting in 1966 and held annually on Labor Day weekend until 2014, the telethon was originally hosted by veteran film star, comedian and singer Jerry Lewis, who also served as the MDA's national chairman since its inception in 1950 and hosted the show until 2010. 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). In 2008, the annual televised fundraiser raised a record $65,031,393.

Official MDA logo used until January 29, 2016

Originally broadcast for up to 21½ hours from 1966 to 2010, the event was cut back to six hours in 2011.[31] The 2011 edition of the telethon was originally announced to have been Lewis' last as host, with him continuing his role as national chairman;[32] however, on August 3, 2011, the MDA announced that Lewis resigned as host and chairman, due to circumstances not revealed.[33] However, in 2016, one year before his death, Lewis broke a five-year silence in a video endorsing MDA's redesigned web site and brand, declaring that the work to end muscular dystrophy be continued.

Additionally, Lewis' support was so ironclad over the years that children and adults assisted by MDA are referred to as Jerry's Kids. From 2012 to 2014, the show was known as the MDA Show of Strength. In early 2015, the organization announced it was discontinuing the show.[34]

On September 9, 2020, MDA executives announced plans to relaunch their annual MDA telethon with a new host, comedian Kevin Hart.[35] Entitled The MDA Kevin Hart Kids Telethon, the new two-hour telethon was seen exclusively through participating social media platforms; the event was broadcast October 24, 2020, at 8 p.m. EDT.[36] The special was a dual-charity event, with proceeds going towards both MDA and "Help From The Hart", an organization founded by the aforementioned new host of the program. Hart's charity announced that it will use its portion of funds raised to "support education, health and social needs programs targeting underserved communities and servicing youth through education scholarships."[37] The telethon was accompanied by a 10-hour Let's Play livestream, called Let’s Play For A Cure, which featured DJ and producer Zedd, gaming personality missharvey and esports athletes.[38] The livestream was a part of a week-long "streamathon", which featured esports stars playing games including League of Legends, Rocket League, Fortnite, Call of Duty and Fall Guys.[39]

Following the Kevin Hart Kids Telethon was MDA’s 70th Anniversary Show, hosted by entertainment TV journalists Nancy O’Dell and Jann Carl.[38]

Every summer, for one week, thousands of children from across the country who have been diagnosed with one of the forty-three muscle diseases covered in MDA's program 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 8–17, are paired with an adult volunteer. They get to participate in fun activities and games and stay overnight. The camps are set up locally and are different weeks throughout the months of May through August. The entire camp staff are volunteer members and are required to interview and apply with good recommendations. The camp is offered at no cost to campers and their families,[40] cost of the camp for the campers and volunteers is covered by the many fundraisers the MDA does each year.[41]

Official MDA Muscle Walk logo since 2016.

Started in 2010, the MDA Muscle Walk is an annual 1 to 3.1 mile lap event held in over 150 communities across the United States to raise money for research and patient services.[42]

MDA's Lock-Up event stages local community leaders as "locked up" behind bars and requires a certain amount of money to "bail" them out.[42]

The Shamrock program, focused around Saint Patrick's Day, includes over 125,000 local retail stores participating. For each donation made at the store, a green shamrock is posted inside the store.[42]

MDA provides both "Care Centers" across the US and a Resource Center that serves a US audience. MDA’s care center network provides specialized neuromuscular care at more than 150 clinics across the United States. Research is also conducted at these centers.[40] MDA’s Resource Center offers support and educational resources for families and healthcare providers affected by neuromuscular diseases.[43]