Post-telethon, Muscular Dystrophy Association tries to find its footing

NEW YORK – For 45 years, many Americans identified the Muscular Dystrophy Association with a man and a event – comedian Jerry Lewis and his annual Labor Day telethon.

The MDA was reduced to Lewis as its chairman and telethon host country in 2011, then he dismissed the telethon itself last year.

So how charity is going in this new era, as a non-Labor Day telethon approaches? The report is mixed.

On the positive side, the leadership of the MDA brims with enthusiasm about the measures taken this year – including increasing online distribution and fundraising, and pledging to double spending on research into the drug development and clinical trials to better combat a series of muscle-wasting diseases.

“We expect more new treatments and therapies [the] next five years than in the last 50 years combined,” said Steve Derks, the chairman of the MDA since 2013.

On the side negative is a difficult financial situation.

In his last report to the IRS, the MDA said it had received contributions totaling about $ 135 million in 2014. According to data collected by the Chronicle of Philanthropy , representing a decrease from a peak of $ 183.5 million in 2007. the data also shows the sliding MDA compared with other US charities – which ranked No. 32 in 1991, in terms of private donations, and fell to number 192 in 2014.

The impact has been tangible. MDA says his staff is now 800, compared to about 1,200 a decade ago, and the funds invested in research decreased from $ 37 million in 2006 to $ 18.5 million in 2014.

Stacy Palmer, editor of the Chronicle of Philanthropy, said the decision to abandon the MDA telethon for new fundraising methods, based on the line summarizes the challenges facing many charities are long established.

“Everything that makes a non-profit organization these days could have the potential to turn off one of the groups that has been very loyal,” she said. “How does a new generation of donors without losing their lifelong followers?”

The cords of Lewis MDA dated almost to its founding in 1950. The following year, Lewis and Dean Martin mentioned fellow comic charity in their NBC, and organized a telethon in 1956 .

Lewis telethon began receiving regularly in 1966 and continued until 2010. guest stars over the years including Frank Sinatra, John Lennon, Michael Jackson, Johnny Cash, Ray Charles, and Celine Dion.

In its heyday, the telethon ran for more than 21 hours with the Lewis tuxedo pushing himself to exhaustion before ending his schmaltzy rendition of “You’ll Never Walk Alone.”

abrupt departure of Lewis, announced by the MDA one month before the telethon in 2011, was never fully explained, although it was clear that the scope of reduced the television broadcast was a factor. The crack was patched during last January when Lewis recorded a message for the launch of the charity of your new logo and slogan, “unlimited live.”

“Families have disagreements, families are,” said chief spokesman for the MDA, Roxan Olivas. “We would not be where we are today without him.”

Over 45 years, the telethon raised nearly $ 2 billion, according to MDA. However, the event was critical -. Especially people with muscular dystrophy who said they were being pitied

“We opposed the harmful narrative of the telethon showing disabled people as nothing more than helpless victims,” ​​activist Mike Ervin wrote a place online last year.

current messaging MDA highlights last minute barrier and self-sufficiency.

in that spirit are incorporated is 25 years old, Joe Akmakjian of Fort Collins, Colo., Which this year became the first adult named as National Goodwill Ambassador for MDA. Akmakjian, who has used an electric wheelchair since he was 3 years old, graduated from Colorado State University in 2013 and works as director of marketing and customer relations in a pain management clinic.

Akmakjian says that when he was young, his parents were warned by a doctor who would not live beyond age 12. Last year the doubling of life expectancy to go skydiving held, tied to your instructor for the jump.

His loyalty to the MDA goes back to childhood, when he attended summer camps run by the charity.

“go camping the first time was really scary for me – I had never been in the care of someone other than the mother,” he said. “Field opened my eyes to a future that could have -. An independent life, living life my way, my way”

The camp program, which serves about 3,800 children each summer free of charge, is one of the three main components of the work of the MDA, along with research funding and operating a national network of over 150 centers. The centers serve about 100,000 people a year; MDA hopes to increase to 150,000 by 2020.

The MDA was among numerous charities aimed at health, which noted the Challenge Ice Cube, the phenomenon of 2014 which became a sensation in social media. He rose $ 115 million to boost the fight against amyotrophic lateral sclerosis , commonly known in the US as Lou Gehrig’s disease.

The MDA cited the challenge last year when he announced the end of his telethon, saying he would seek “new, and organic and creative ways to support our mission.”

One of the new initiatives launched this summer :. In six-week online awareness campaign and fundraising that includes live performances of music, games online, and opportunities for families affected by muscular dystrophy sharing inspirational stories

The MDA would like to improve their rating from charity Navigator, a charitable group-evaluation. It gives MDA 2 stars out of 4 in his final grades, arguing that it could do better in various financial criteria, including spend less of their income on fundraising operations.

Steve Derks, the chairman of the MDA, the wishes of the qualifying groups of charity were able to measure how well charities out his mission.

“There is nothing to measure the impact that MDA has had on the thousands of children who have passed through our summer camps – the impact we have had on their confidence, their ability to live a full life” , He said .

– David Crary

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