Muscular Dystrophy Association seeks post-telethon identity
NEW YORK (AP) — For 45 years, many Americans identified the Muscular Dystrophy Association with one man and one event — comedian Jerry Lewis and his annual Labor Day telethon.
The MDA dropped Lewis as its national chairman and telethon host in 2011, then scrapped the telethon itself last year.
So how is the charity faring in this new era, as a no-telethon Labor Day approaches? The report card is mixed.
On the upside, the MDA’s leadership brims with enthusiasm about steps taken this year — among them, expanding online outreach and fundraising, and pledging to double spending on research toward drug development and clinical trials to better combat a range of muscle-debilitating diseases.
“We expect more new treatments and therapies in next five years than in the past 50 years combined,” said Steve Derks, the MDA’s president since 2013.
On the downside is a challenging financial picture.
In its latest report to the IRS, the MDA said it received contributions totaling about $135 million in 2014. According to data compiled by the Chronicle of Philanthropy, that’s down from a peak of $183.5 million in 2007. The data also shows the MDA slipping in comparison to other U.S. charities — it ranked 32nd in 1991 in terms of private donations, and fell to 192nd in 2014.
The impact has been tangible. The MDA says its staff is now about 800, compared to about 1,200 a decade ago, and the funds invested in research dropped from $37 million in 2006 to $18.5 million in 2014.
Stacy Palmer, editor of the Chronicle of Philanthropy, said the MDA’s decision to abandon the telethon in favor of new, online-based fundraising methods epitomized the challenges faced by many long-established charities.
“Everything a nonprofit does these days could have the potential of turning off one of the groups that’s been very loyal,” she said. “How do they reach a new generation of donors while not losing their longtime supporters?”
The MDA’s ties with Lewis date back almost to its founding in 1950. The next year, Lewis and his comic partner Dean Martin mentioned the charity on their NBC show, and they hosted a telethon in 1956.
Lewis began hosting the telethon regularly in 1966 and continued through 2010. Guest stars over the years included Frank Sinatra, John Lennon, Michael Jackson, Johnny Cash, Ray Charles and Celine Dion.
In its peak years, the telethon ran for more than 21 hours, with the tuxedo-clad Lewis pushing himself to exhaustion before ending with his schmaltzy rendition of “You’ll Never Walk Alone.”
Lewis’ abrupt exit, announced by the MDA a month before the 2011 telethon, was never fully explained, though it was clear that the declining reach of broadcast TV was a factor. The rift was patched over last January when Lewis taped a message for the charity’s launch of its new logo and motto, “Live Unlimited.”
“Families have disagreements, families make up,” said the MDA’s chief spokeswoman, Roxan Olivas. “We would not be where we are today without him.”
Over 45 years, the telethon raised nearly $2 billion, according to the MDA. But the event had critics — notably people with muscular dystrophy who said they were being made objects of pity.
“We objected to the telethon’s damaging narrative that depicted disabled people as nothing more than helpless victims,” activist Mike Ervin wrote an online post last year.
The MDA’s current messaging emphasizes barrier-breaking and self-reliance.
Embodying that spirit is 25-year-old Joe Akmakjian of Fort Collins, Colorado, who this year became the first adult named as the MDA’s national goodwill ambassador. Akmakjian, who has used a power wheelchair since he was 3, graduated from Colorado State University in 2013 and works as director of marketing and client relations at a pain management clinic.
Akmakjian says that when he was little, his parents were warned by a doctor that he wouldn’t live past age 12. Last year, he celebrated the doubling of that life expectancy by going skydiving, strapped to his instructor for the jump.
His loyalty to the MDA dates back to childhood, when he attended summer camps run by the charity.
“Going to camp the first time was really scary for me — I’d never been cared for by anyone besides by mom,” he said. “Camp opened my eyes to the future I might have — living independently, living life my way, on my terms.”
The camp program, which serves roughly 3,800 children each summer at no charge, is one of three main components of the MDA’s work, along with funding of research and operating a nationwide network of more than 150 care centers. The centers serve about 100,000 people annually; the MDA hopes to boost that to 150,000 by 2020.
The MDA was among numerous health-oriented charities which took note of the Ice Bucket Challenge, the 2014 phenomenon that become a social-media sensation. It raised $115 million to boost the fight against amyotrophic lateral sclerosis, commonly known in the U.S. as Lou Gehrig’s disease.
The MDA cited the challenge last year when it announced the end of its telethon, saying it would seek “new, creative and organic ways to support our mission.”
One of the new initiatives was launched this summer: a six-week online awareness and fundraising campaign that included live music performances, online games, and opportunities for families affected by muscular dystrophy to share inspirational stories.
The MDA would like to improve its rating with Charity Navigator , a charity-assessment group. It gives the MDA two stars out of four in its latest ratings, saying it could do better on various financial criteria, including spending less of its revenue on fundraising operations.
Steve Derks, the MDA’s president, wishes the charity-rating groups were able to gauge how well charities carry out their mission.
“There’s nothing to measure the impact that the MDA has had on the thousands of children who’ve gone through our summer camps — the impact we’ve had on their confidence, their ability to live a full life,” he said.
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