Neha Patil (Editor)

Muscular Dystrophy Association

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Covid-19
Abbreviation  MDA
Type  non-profit
Region  United States
CEO  Kristine Welker
CFO  Julie Faber
Formation  1950 in New York, NY
Location  Chicago, Illinois
Founded  1950
Chairperson  R. Rodney Howell

Focus  patient services and disease research
Headquarters  Chicago, Illinois, United States
Motto  For Strength, Independence & Life
Similar  ALS Association, National Multiple Sclerosis, March of Dimes, American Cancer Society, American Red Cross
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Chl 7 16 14 muscular dystrophy association


The Muscular Dystrophy Association (MDA) is an American organization which combats muscular dystrophy and diseases of the nervous system and muscular system in general by funding research, providing medical and community services, and educating health professionals and the general public. The organization was founded in 1950 by a group of concerned parents of children with muscular dystrophy. Originally known as the Muscular Dystrophy Associations of America, it was renamed to its present name in the 1970s.

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Comedian and actor Jerry Lewis was the most popular and well known celebrity associated with MDA, whose work with the organization was known through his annual telethon that he hosted annually through 2010. Other celebrities and entertainers have supported the organization over the years, including Dean Martin, Frank Sinatra, Sammy Davis, Jr., Wayne Newton, Michael Jackson, Ed McMahon, Norm Crosby, Don Francisco, Aretha Franklin, Maureen McGovern and Diana Ross.

MDA's national office is in Chicago, Illinois.

Fire department forum boot drive for the muscular dystrophy association


Overview

The annual telethon, from 2012 to 2014 known as the MDA Show of Strength, was held on Labor Day weekend. Debuting in 1966, it was previously hosted by Lewis, who also served as the MDA's 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 was 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 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), 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. 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, N.C. who is affected by Duchenne muscular dystrophy and current National Goodwill Ambassador 9-year-old Reagan Imhoff of New Berlin, Wisconsin.

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 6–17, 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 cost of the camp for the campers and volunteers is covered by the many fundraisers the MDA does each year.

MDA and Lewis were once 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.

Diseases targeted

MDA targets the following muscular dystrophy diseases:

  • Duchenne muscular dystrophy
  • Becker's muscular dystrophy
  • Emery–Dreifuss muscular dystrophy
  • Limb-girdle muscular dystrophy
  • Amyotrophic lateral sclerosis
  • Congenital muscular dystrophy
  • It also targets the following:

    The organization also targets muscle diseases due to deficiencies in carnitine and the following enzymes:

  • Phosphorylase
  • Acid Maltase (Pompe's disease)
  • Phosphofructokinase
  • Debrancher enzyme (also known as Amylo-1,6-glucosidase); a glycogen storage disease also known as Forbes disease
  • Carnitine palmityl transferase
  • Phosphoglycerate kinase
  • Phosphoglycerate mutase
  • Lactate dehydrogenase
  • Myoadenylate deaminase
  • Legislation

    The MDA supported the Newborn Screening Saves Lives Reauthorization Act of 2013 (H.R. 1281; 113th Congress), a bill that would amend the Public Health Service Act to reauthorize grant programs and other initiatives to promote expanded screening of newborns and children for heritable disorders. The MDA argued that "many of the drug therapies currently under development for MDA's community will be of most benefit if administered either presymptomatically or early in the progression of the disease. Thus, for some of the diseases in MDA's program, the availability of a newborn screening program at the time of treatment availability presents the best opportunity for impacting optimal and potential lifesaving treatment outcomes."

    The MDA supported the Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2013 (H.R. 594; 113th Congress), a bill that would amend the Public Health Service Act to revise the muscular dystrophy research program of the National Institutes of Health (NIH). MDA argued that "a great deal of work still needs to be done, and increased federal support is needed to ensure that researchers can continue making progress toward finding a cure."

    Better Business Bureau and charity assessment

    According to a Better Business Bureau summary released in September, 2015, the Organization:

  • oversees a network of 200 hospital-affiliated clinics providing diagnosis and treatment, including more than 40 MDA/ALS centers for Lou Gehrig's disease
  • offers diagnostic and follow-up care, support groups, summer camps for children (aged 6-17), and assistance to repairs medical equipment
  • funds research for disease treatments and cures
  • has a paid staff of 812 people
  • received $145.3 million donated because of fund-raising activities, 15% of which was spent on the fund-raising activities.
  • Charity Navigator, which is the largest independent evaluator of charities, gives MDA two out of four stars based on Financial, Accountability, and Transparency Performance Metrics.

    References

    Muscular Dystrophy Association Wikipedia


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