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

America's Healthcare Hero For 60 Years

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 starting in 1951—just months after the founding of the Muscular Dystrophy Association—until his abrupt dismissal in August 2011.

Lewis was well respected by many, and by 2008, Nationwide Insurance, the giant insurer headquartered in Columbus, Ohio, 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

Jerry Lewis

March 16, 1926–August 20, 2017

"Dream as if you'll live forever, live as if you'll die today."

[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

Controversial for his 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 services. He is still loved by millions of people worldwide.

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

When the MDA ousted Lewis from service, it is possible that the organization felt 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. Its successful products include Wnt7a protein analogs, along with FT301 used with stem cell therapies designed for individual patients.

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 MDA for 60 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.

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.

Longtime movie 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

Telethon Timeline

Jerry Lewis is recognized for having spent several decades as a tireless champion who raised $2 billion for the service and research programs of the MDA during his 54-year association with that organization.

— Snopes.com

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.

Employees Dissatisfied with MDA

Testimony by staff and executives on Glassdoor.com reveal problems within MDA. Increasingly, other pledge and collection systems have outdistanced 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

Principal Engineer, February 2023: "Goldfish executive team that chases the next new management fad with weak leadership at the VP levels."

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

Sources

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 (1986-2023), paving the way for future patients.] Ryan was one of the founders of Coming Together for a Cure (CTFAC). targeting DMD and related disorders.
14. Tidball, J.G.; Welc, S.S.; Wehling-Henricks. W. Immunobiology of Inherited Muscular Dystrophies. Comprehensive 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