Jerry Lewis, the comedian and longtime head of the Muscular Dystrophy Association (MDA) telethon, will no longer be the host or chairman of the event.
The MDA announced Lewis’s retirement in an August 3 press release saying, “Jerry Lewis has completed his run as its national chairman.”
R. Rodney Howell, chairman of the association’s board of directors said, “Jerry Lewis is a world-class humanitarian and we’re forever grateful to him for his more than half century of generous service to MDA. We will not be replacing him as MDA national chairman and he will not be appearing on the telethon.”
In May, Lewis announced that this telethon would be his last and said he planned to stay on as chairman. Instead he has been removed for reasons that are unclear. The telethon has also been shortened from 21 ½ hours to 6 hours.
“I'll never desert MDA and my kids,” Lewis said in May. “We’re so close to treatments that it’s absolutely vital for everyone to tune in and make a generous donation.” The MDA did not respond to requests for comment.
Lewis, who has a back condition, heart issues and pulmonary fibrosis and is 85 years old, has hosted the Labor Day telethon since 1966. The Tucson-based MDA has raised more than $2.5 billion.
But Nick Dupree, who was a participant in the telethon in Mobile, Alabama until he was 11 years old, said the money is funding research instead of services. Dupree posted a scanned letter from the MDA on his blog, www.nickscrusade.org, announcing in late 2009 that the association would no longer pay for durable medical equipment or fund transportation to clinic appointments due to the economic crisis.
“It just seems like the telethon is misleading,” said Dupree, whose family paid for his summer camp as a child without help from the MDA and hasn’t received assistance purchasing wheelchairs as an adult.
“As we get older we see that we’re not Jerry’s kids anymore – we’re Jerry’s adults and there’s nothing for us like when we were kids. There’s a lot of resentment,” Dupree said. “We believe we gave it all to support the telethon and there would be services. We were optimistic that we would have a cure if we worked hard enough.”
Chris Wiggins, a telethon poster child and Dupree’s oldest friend, passed away due to lack of care as an adult in Alabama, according to Dupree.
Dupree, who left the telethon in 1992, said he does not expect Lewis’s departure to change the MDA right away. “Jerry was the spokesman. He never made the policies himself,” Dupree said.
Will Nolan, director of communications for Parent Project Muscular Dystrophy in New Jersey said Lewis’s retirement was to be expected given his age and that his organization is grateful for Lewis’s work to generate publicity about muscular dystrophy.
“I think that Mr. Lewis has to be given a great deal of credit for the awareness he brought to muscular dystrophy over the years. Obviously there’s been a great deal of money raised and the MDA has been an important part of the research that’s out there, but what he’s done as a celebrity to bring awareness to all of the muscular dystrophies is phenomenal,” Nolan said.
This article was published in the September 2011 issue of Able News.
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