Why no mda telethon

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There will be no broadcast this year. The thing is, the MDA telethon was more than just a fundraiser. It was a star-studded parade of singers and entertainers. After that, Lewis was named the organization's National chairman, a voluntary position he would hold for 55 years. For plus hours, Lewis would sing, joke, mug, cajole, weep, and play ringmaster to a horde of celebrities as he appealed to viewers to dig deep and donate to the Muscular Dystrophy Association.

Earlier this year, the Muscular Dystrophy Association announced that the organization was ending the annual Labor Day telethon. It's a move that followed Lewis retiring as host in , and recent years that saw the once daylong extravaganza shrunk, first to six hours, then to three hours. In announcing the end of the Labor Day telethon, the Muscular Dystrophy Association cited "the new realities of television viewing and philanthropic giving.

Derks, MDA president and CEO, said, "In the last few years, the show was adjusted to reflect changes in viewership and donor patterns, and last summer's Ice Bucket Challenge once again affirmed for us that today's families, donors and sponsors are looking to us for new, creative and organic ways to support our mission.

Each year, Lewis would dominate the show, delivering a blend of showbiz schmaltz, and true-life, touching stories of people who had muscular dystrophy and their families. Whether you liked it or cringed, it was live television at its most live, with Lewis getting more cranky and teary as the hours rolled by, pleading with viewers to make the numbers on the tote board increase.

Wolinsky went to MDA camp for most of her childhood and loved it. It also showcased kids with neuromuscular disabilities. Other children with neuromuscular disabilities were also featured in filmed footage that would air on the telethon, which Wolinsky said was sourced from MDA camps. So, one day, they organized a boycott. We ran away from the cameras. The cameramen were really upset and were trying to guilt us into doing stuff.

But we were openly shutting them down left and right. Last weekend, the MDA brought the telethon back for the first time in six years. The news last September that the MDA would be bringing its telethon back incited major backlash in the disability community. Many disabled people had long criticized the Lewis-era telethon for its demeaning and pitying portrayals of kids with neuromuscular disabilities.

Two weeks ago, Dominick Evans, a filmmaker, movie and TV consultant, disabled activist and former MDA poster child, organized a protest on Twitter against the upcoming revamped fundraiser with the hashtag EndTheTelethon. Disabled people used the hashtag to express their distrust of the MDA and share stories about how the old telethon negatively affected their lives. As someone who lives with Muscular Dystrophy, the MDA Telethon has caused a lot of damage to disabled folks for decades!

Parading us as hopeless, helpless, and in need of a cure In , MDAorg chose me as one of the inaugural members of a Community Advisory Committee to help them fix their ableist, harmful model of charity. They scheduled ONE meeting with us and, after hearing our input, cancelled the Committee altogether.

I remember being a young kid, maybe years old, and going on live TV in front of thousands of people. I remember by parents saying on TV that I was 'dying' - and I remember how painful that was because that was honestly news to me.