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Why Did the Muscular Dystrophy Association Eliminate the Jerry Lewis Telethon?

Patty uses advanced degrees in preventive medicine and health psychology in research and treatment for public and private health agencies.

Jerry Lewis Quote: "Dream as if you'll live forever, live as if you'll die today."

Jerry Lewis Quote: "Dream as if you'll live forever, live as if you'll die today."

America's Healthcare Hero From 1951 to 2011

Jerry Lewis was criticized as self-centered and attention seeking, but his driven efforts helped to raise over $2.5 billion for muscular dystrophy treatment research from 1951, just months the founding of the Muscular Dystrophy Association, until his abrupt dismissal in August 2011.

Mr. Lewis was well respected by many, and by 2008, Nationwide Insurance, the giant insurer headquartered in Columbus, Ohio, had listed him first among the top 10 most influential celebrities in history.

France awarded him high honors equivalent to a knighthood: The Commander of Arts and Letters of the Legion of Honor, created by Napoleon Bonaparte in 1802. In 1977, he became the only comedian ever nominated for the Nobel Peace Prize, which was won by Amnesty International that year.

Jerry convinced Dean to help him raise money for MDA on Dec. 28, 1951 and continued on his own after Dean's death, all the way through August 2011.

Jerry convinced Dean to help him raise money for MDA on Dec. 28, 1951 and continued on his own after Dean's death, all the way through August 2011.

He (Lewis) has been hailed as one of the greatest director-comedians of the twentieth century. He was nominated for the Nobel Peace Prize, and has received numerous other honors for his tireless efforts in the fight against the forty neuromuscular diseases.

— Three Rivers Press comments on publication of "Dean and Me, A Love Story in 2005."

Controversial for his untiringly loud ambition, Jerry Lewis admitted in his book Dean and Me, A Love Story, that he was criticized for his supposed self-absorption. However, he was driven to achieve in several areas that included comedy, writing, film production, and filmmaking technologies as well as humanitarian service. He is still loved by millions of people that include the French, which appreciate his slapstick satire of American capitalism.

Only Lewis has the gift for making visual comedy that is also supreme social satire.

In films like 'Smorgasbord,' he makes fun of the entire human condition.

— Robert Benyaoun, biographer; 1989

In ousting Lewis from service, it is possible that MDA leaders felt that he was too old to continue, or that he planned to report the association's fiscal problems to the public. While he never received payment himself, the many MDA vice presidents, including Jann Carl of the Labor Day event, received at least $100,000 yearly.

Perhaps the comedian planned to announce that a scientist outside MDA had already successfully found a cure for a large set of conditions among muscular dystrophies, and this would hurt the association.

Influencing Medical Research

As Lewis announced new treatments and promising cures for neuromuscular conditions each year on Labor Day Weekend to his audiences around the world, new medical research companies entered the field of neuromuscular research and treatment.

I discovered Fate Therapeutics in this field in 2009. It is the top stem cell therapy developer in cancer, autoimmune, and degenerative conditions like Duchene muscular dystrophy among 18 companies recognized internationally as the most successful leaders in this work for 2020 through 2026 (Maia Research, Deep Research 2020). This company developed ways of regrowing muscles devastated by the diseases that Jerry Lewis campaigned to end.(3,4,5,9,10,11) Its successful products include Wnt7a protein analogs, along with FT301 used with stem cell therapies designed for the individual patient.

Fate Therapeutics is confident they have the cure for Duchene's as well as some varieties of cancer and other conditions. California's Stem Cell Agency (CSCA) and Stem Cell Institute of Panama are also successful in treating Duchene's. Neurogen Brain and Spine Institute has achieved marked success in 90% of their dystrophy patients, allowing them to grow new muscle tissues to increase strength in the arms, legs, trunk, and heart; as well as increasing balance and coordination.

Testimonials for an American Hero

Jerry Lewis served the Muscular Dystrophy Association for sixty years, and then he was suddenly removed from service. The exact reason for his ouster was never revealed, but the thousands of people around the world who appreciated his efforts were blindsided and emotionally devastated.

Read More From Soapboxie

On Friday, August 5, 2011 several comedians met at Hollywood’s Laugh Factory to pay tribute to Jerry Lewis and to denounce his removal from the annual telethon that raised large sums for research to cure and prevent neuromuscular diseases. Concerned comics included Norm Crosby, Tom Dreesen, Larry Miller. and Paul Rodriguez, among others at a press conference at the club.(7,8,13)

Longtime critic Roger Ebert also criticized the company, according to Reuters (August 6, 2011). Jerry Seinfeld, Eddie Murphy, Quentin Tarantino, and Alec Baldwin presented positive opinions of Lewis in a film called Method to the Madness of Jerry Lewis that premiered in October 2011, after a much-scaled down telethon was broadcast.

This is a shock to the world. People are stopping me in the street. I’m getting calls from wire services from around the world and magazines asking what happened.

— Richard Belzer, actor

Top 10 Most Influential Celebrities in 2008

American survey by Nationwide Insurance in 2008.

Jerry Lewis

Oprah Winfrey

Michael J. Fox

Former President Jimmy Carter

Bill Gates

Angelina Jolie

U2's Bono

Lance Armstrong

Katie Couric

Rosie O'Donnell

Spot Light Stars via freeimages.com

Spot Light Stars via freeimages.com

Jerry Lewis receives no pay for his tireless year-round work for MDA. He is MDA's "number-one volunteer" and star of the Telethon.

— Snopes.com/https://www.snopes.com/fact-check/mda-telehon-lewis/

Telethon Timeline

June 1950

The MDA was founded.

1951-1952

Jerry Lewis persuaded Dean Martin to help begin raising funds for the MDA in a series of small events and TV specials.

June 29-30, 1956

Martin and Lewis co-hosted their first MDA telethon from New York City’s famed Carnegie Hall.

1966

The first MDA Jerry Lewis Labor Day Telethon was broadcast by a single station in New York (WNEW-TV)

1971

“Love Network” of stations was solidified.

2011

MDA Show of Strength pre-taped show was just 6 hours long.

2012

Show of Strength was reduced to 3 hours in length.

2013

The pre-recroded show was reduced to 2 hours.

May 1, 2015

MDA officially ended the annual telethon.

 

 

October 2020

Kevin Hart became MC of the new MDA Kid's Virtual Telethon. Hart's production company received an undisclosed payment for this event. The amount of pledges was not revealed. People who did not have internet access could not see the event.

Hart's production company received an undisclosed payment for this event.

labor-day-weekend

I once worked as a stand-in for Jerry Lewis. For weeks our relationship was a bit awkward, but a turn of events changed everything. I'm even here to write about it only because Jerry came to my rescue in a very big way.

— "Seafood Gumbo", former Hubpages author.

Muscular Dystrophy Association Cutbacks

On August 3-4, 2011, controversy grew around Jerry Lewis's retirement from MDA as National Chairman and Labor Day Telethon Host. He announced publically that he would retire and share important information about MDA.

The association had been making program cutbacks and made no excuses for quick, curtly announced cutbacks that culminated in removing Lewis from service. MDA officials stated that too many TV station affiliates had dropped the annual telethon, the entertainment acts were no longer good, and immediate cutback action was vital.

Fame is a big beautiful balloon surrounded by a lot of boys with sharp pins.

— Jerry Lewis in a Rolling Stone interview in 1982

Lack of Transparency

After the Lewis ouster, the 24-hour telethon was shortened to six hours, then to two hours, and then eliminated by 2015. MDA leaders had been collecting a much smaller percentage of actual funds from pledges made since 2011, and from 2012 through 2015, line items in the company's annual report were troubling. Specifically, the line item listing the dollar amount and percentage of telethon pledges collected became absent. These figures were absorbed into larger line items, effectively hiding the information.

Interestingly, the ALS Ice Bucket Challenge (ALS/Lou Gehrig Disease belongs to the MDA family of conditions) raised about $90,000,000 before Labor Day in 2014, without any involvement from the MDA.

Many problems seem epidemic at MDA, according to Glassdoor reviews from employees, sampled below.

"Where has he gone to?" Leaving every chair behind.

"Where has he gone to?" Leaving every chair behind.

Employees Dissatisfied with MDA

Testimony by staff and executives on Glassdoor.com reveal problems within MDA. Increasingly, other pledge and collection systems have out distanced the new MDA "telethon."

As of autumn 2020, the average rating at Glassdoor, Indeed, and SimplyHired for MDA employee satisfaction was only 2.1 out of 5 stars, a decrease from 2.5 stars in 2016. MDA employees also reported that the company maintains 30 National Vice Presidents with 6-figure incomes. Only 13% of reviewers would recommend working there to a friend, down from 30% in 2016. Only 5% approve of the CEO Lynn O'Connor Vos.

Sample Quotes From Employees

Development Coordinator, October 2020: "MDA started cutting services that we were giving to families. The benefits for employees slowly got worse. It seemed as though the higher ups were only interested in the quickest way to make money instead of helping our families."

Development Specialist, September 2020: "Stop saying you provide services to families living with muscle diseases, when all you do is cut services, staff, while paying executive salaries."

Earlier Employee Comments

Executive Director, June 2011: "Morally degrading, life consuming, thankless, need a self esteem class to get back on track. Management by fear, everyone comes to work motivated only by the fear that they will be fired. Average tenure is 2 years, and I believe that is a stretch. It's harder and harder to raise funds because the entire model is based on building relationships, but sponsors and donors are so exhausted by having to meet different employees every year, that they are just not engaged any longer and stop giving or cancel events."

Health Care Service Coordinator: "MDA's hours can be brutal! While they offer lots of holidays, there is no comp time. So, there are times that I have worked 14 days in a row because of an event and they do not even allow us to come in late or have a day off. You work until the work gets done and if it takes 10 hour work days, that's what it takes. It wouldn't be so bad if they paid decent, but not only have we not gotten a raise in over 4 years, we were just furloughed for the week of Thanksgiving. That is actually a 2% pay cut! There is a revolving door - they cannot keep staff and they are not honest with staff about what the job actually entails time wise."

Pressure from Leadership to do a lot of personal fundraising to reach budget goals" (in 83 reviews as of 12-07-2021)

Explosive outbursts of anger and other inappropriate behaviors/practices by upper management" (in 57 reviews as of 12-07-2021)

— Muscular Dystrophy Association Employee Reviews at glassdoor.com

Resources

  1. Benyaoun, R. Bonjour Monsieur Lewis: Journal Ouvert, 1957-1980; French Edition; January 1, 1989.
  2. Benyaoun, R. Jerry Lewis: The Man Behind the Clown; 2016.
  3. California's Stem Cell Agency (CSTM). Stem Cell Therapy for Duchenne Muscular Dystrophy; July 2020.
  4. Glassdoor.com, Employee Reviews of Muscular Dystrophy Association; 2021.
  5. Fate Therapeutics. Fate Therapeutics to Present at World Muscle Society Congress. October, 2013.
  6. Friedman, R. Labor Day Jerry Lewis Telethon Without Comedian: MDA Lost $14 Million Last YearShowbiz411 | Showbiz4 [MDA: Little by little everything is falling– income, revenue, grants. The only thing that gets better at MDA is (6-figure) salaries. Gerald Weinberg, the long time president, made over $400,000 in 2012.]
  7. Greenfield, B. Why disability-rights activists are furious about controversial MDA telethon returning after 6-year hiatus. Yahoo!Life; October 22, 2020.
  8. Katsilometes, J. Richard Belzer: Jerry Lewis Ouster from MDA Smacks of "Indignity, Disrespect." Las Vegas Weekly; August 8, 2011.
  9. Las Vegas Weekly. "MDA telecast raised more -- a lot more -- with Jerry Lewis in 2010 than without him in 2011"
  10. Maia Research, Deep Research. Global Induced Pluripotent Stem Cells Market Report 2020 by Key Players, Types, Applications, Countries, Market Size, Forecast to 2026. Reports Monitor Print Editions, Cincinnati OH; July 31, 2020.
  11. MDA 990 tax returns, 2011 - 2018.
  12. Neurogen Brain and Spine Institute. How Does Stem Cell Therapy for Muscular Dystrophy Work? 2020.
  13. Riordan, N. H., PhD. First Duchenne’s Muscular Dystrophy Patient To Receive Umbilical Cord Stem Cell Therapy In US Turns 30. Stem Cell Institute of Panama; 2016. [The first U.S. patient with Duchenne Muscular Dystrophy to be granted FDA approval for allogeneic adult stem cell therapy, musician Ryan Benton (age 30 in 2016), paving the way for future patients.]
  14. Tidball, J.G.; Welc, S.S.; Wehling-Henricks. W. Immunobiology of Inherited Muscular Dystrophies. Comprehenive Physiology. 2018 September 14, 2018; 8(4):1313-1356.
  15. Weinraub, J. Roger Ebert, Comedians Rally for Jerry Lewis After Telethon Ejection. The Wrap, Reuters; August 6, 2011.

This content is accurate and true to the best of the author’s knowledge and is not meant to substitute for formal and individualized advice from a qualified professional.

© 2008 Patty Inglish MS

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