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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.

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."

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, Employee Reviews of Muscular Dystrophy Association.
  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

Comments & Thoughts

Patty Inglish MS (author) from USA and Asgardia, the First Space Nation on September 05, 2016:

True that! I am angry over this matter still. An article in the news yesterday shows how MDA has collected smaller and smaller amounts of donations every year in 2011, 2012, 2013, and 2014. Other research accompanies will put them out of business within the decade, imo.

Treathyl FOX from Austin, Texas on September 05, 2016:

I don't care what the reasons were for the ouster. I thinking those behind the scenes and "in charge" are ungrateful people. They don't an ounce of compassion for a person who kept them employed all those years.

Patty Inglish MS (author) from USA and Asgardia, the First Space Nation on September 04, 2015:

During 2011 - 2014, the MDA "telethon" received far less in pledges than Jerry Lewis had done; and 2011 - 2014 collections of those were dismal. In 2013, MDA removed the "telethon" line item from financial statements and added it to some other category. Now, we cannot find out the yearly dollar amount.

Fate Therapeutics is making more progress in muscular dystrophy cures than MDA by growing new muscle fibers.

Patty Inglish MS (author) from USA and Asgardia, the First Space Nation on September 05, 2012:

I will add anything I can find, but MDA would not publish their Pledge Total for 2012, because they were able to collect only about 50% of the total in 2011, whereas under Jerry, no year's collections ever dipped below 73%, even in a recession.

I did learn that MDA has 30 National VPs that all earn 6-figure incomes, it reports that 1 minute of its research costs $70, and 1 week of their summer camp is $800. An MDA summer camp north of me charges much less for a week, so something is wrong. As for research, Fate Therapeutics already has the effective treatment for Duschenne MDA. So, including the costs of high employee turnover, I think there is much waste in the use of MDA pledge funds. Thirty VPs at 6-figure incomes? I think that is absurd.

The recipes are left from the original Hub on watching the Telethon and having related cookouts. That section is cacophonous when we reach it now, deafening in its eerie reminder of shocking losses and wasted pledges. Probably next year, I'll move the recipes somewhere else, but the dissonance still feels right to me at this moment. It reminds me of Labor Day 2006 when Steve Irwin died by stingray wound and someone sold eerie T-shirts with only a stingray on the front.

SEXYLADYDEE from Upstate NY on September 05, 2012:

Thanks for adding some clarity to a situation many if us didn't have a clue about, other than he and the telethon just disappeared. I did the annual fundraising walk for ten years. I hope you will expand this hub if the other side if this is ever exposed. I will admit the recipes at the end did not flow with the honest and informative article at the beginning. Dee

Patty Inglish MS (author) from USA and Asgardia, the First Space Nation on September 02, 2012:

Friends have been looking in the TV listings, searching for the MDA telethon, not realizing that there is not to be one this year.

Patty Inglish MS (author) from USA and Asgardia, the First Space Nation on September 01, 2012:

The MDA Telethon was eliminated for 2012. Read the updates and wonder.

Patty Inglish MS (author) from USA and Asgardia, the First Space Nation on February 11, 2012:

I feel the same way. After these months, it feel like the MDA was reluctant to let him continue, because the organization thought he might level harsh criticism on them during the show or the next day in his planned announcements. It was a pre-emptive strike from MDA and I'm sad it happened. i think it was wrong.

myawn from Florida on February 11, 2012:

The MDA show won't be the same without Jerry Nice Hub! voted up

sligobay from east of the equator on September 29, 2011:

Great article Patty. I enjoyed all f the information imparted about the Telethon and the origin of Labor Day. I also hope Jerry Lewis will disclose his secrets at a press conference.

Patty Inglish MS (author) from USA and Asgardia, the First Space Nation on August 15, 2011:

I'm hoping Jerry Lewis will have the press conference after the Telethon, as he had planned.

Patty Inglish MS (author) from USA and Asgardia, the First Space Nation on August 08, 2011:

Thanks for commenting, quotations. A two-hour final telethon send off party would have been OK, with lots of guest stars. I'm sure On the Rocks acapella group would have loved to have been there and made Lewis laugh.

Robert P from Canada on August 08, 2011:

I think that they should have given Jerry a more honorable sendoff, provided he agreed not to embarrass the organization on air by complaining about being forced out.

But the fact is that it was long passed time for Lewis to go. I found his presentation terrible and irritating like finger nails on a chalkboard - any time I saw him hosting I changed the channels.

This is not to take away from his great achievements as the host and with the organization, but it would have been best for everyone if he had realized that it was time to pass on the torch rather than for someone else to have to make the tough decision. If he had chosen to retire both he and the organization would have benefited from favorable publicity rather than this mess.

Patty Inglish MS (author) from USA and Asgardia, the First Space Nation on August 08, 2011:

A group of comedians is planning their own Labor Day show in honor of Jerry Lewis's work for MDA, with proceeds to go to MDA.

Robert Ebert blasted MDA in the press.

Raymond D Choiniere from USA on August 06, 2011:

You're quite welcome Patty. I would think it would definitely be a different show without his wit mastery. I mean Jerry Lewis was a natural comic, in every sense of the word and for a very long time. But, I don't think it would do as good without him. When he did the show he was quite serious about it and I simply do not think there will be any substitute that will match his long standing and accomplishments. :)

SEXYLADYDEE from Upstate NY on August 06, 2011:

I also missed the announcement. It's the end of an era. As a child I loved watching his telethons with my family. He is the reason I did the walkathons for over 20 years. I was inspired by his dedication and as a young person it made me aware of the need for service to your community. I suppose Dick Clark will retire next and then the last of the great "ones" will be gone. Thanks for this informative hub. Dee

ross670daw on August 04, 2011:

I have been a huge fan of Jerry Lewis since I was a kid watching his movies on a saturday afternoon, his comedy was amazing. I wasn't aware back then of his fantastic charitable contribution to society though, it's the mark of the man. His participation and efforts over a long and colorful career will not be forgotten.

Long live JL.

Earth Angel on August 04, 2011:

Dearest Patty,

You bring up some interesting points! I somehow missed this in the news! I have supported MDA and the Jerry Lewis Telethon for decades! I have several friends affected and JL always provided long-lasting hope!

I too, have waited for so many years to learn the secret of his motivation! I always thought it must be someone in his family, maybe a sibling, that died early on due to this disease, and it was kept a secret! (Hard to do in Hollywood, however!?)

This corporate "upset" will be good for ratings! We will all be tuning in to see "what's up??"

I do hope it wasn't some immediate health issue with Jerry himself!? The last few MDA Telethons he didn't look too well?

I send them all the very BEST! They have done some amazing work over the years!

Blessings for bringing this so quickly to our attention!

Earth Angel!

FloraBreenRobison on August 04, 2011:

I must say in reading the announcement that I have never heard of any of the announced hosts for the show. At 35, I'm not sure if this says more about me loving classic Hollywood, or about me being 35,period.

deblipp on August 04, 2011:

He's not beloved in the disability community, who don't want to be talked about as pathetic, but rather as vital human beings with disabilities.

Patty Inglish MS (author) from USA and Asgardia, the First Space Nation on August 04, 2011:

Thanks, Cagsil - It is going to be a strange show this year, I think.

Raymond D Choiniere from USA on August 04, 2011:

Hey Patty, I watch Jerry Lewis for many years and even contributed to the MDA over the years. I would always root for him to break the goal every year and I have to admit it was inspiring how people would pull together, because of his empowering personality. It was awesome to watch. :) Great hub! Definitely voted up! :)

Patty Inglish MS (author) from USA and Asgardia, the First Space Nation on August 04, 2011:

As a young child, I saw an old news clip of Lewis imitating, I thought, a cerebral palsy patient. Always wondered of he was trying to make amends with the telethon. Fifty-none years is a long time to be helping anyone or any cause. Not many do this.

daskittlez69 from midwest on August 04, 2011:

I am way late on reading this. But I thoroughly enjoyed your hub. I knew Jerry Lewis had been doing the telethon for a long time but I would have never guessed as how long. Here is your up.

FloraBreenRobison on August 04, 2011:

I've always been divided about Jerry Lewis ever since he referred to people by a derogatory phrase I won't repeat. This is aman who is helping them? I have a biased opinion because I have slight cebral palsy in my right side and I am very sensitive to so called political correctness vs. not mentioning a disability at all. For example, I detest "physically challenged." That refers to a wide range and can be just a need for reading glasses. He has raised a lot of money and that is excellent. He may yet reveal why he has been doing these fundraisers -perhaps after he dies this information will be revealed the way katherine Hepburn's diaries were revealed after she died.

Patty Inglish MS (author) from USA and Asgardia, the First Space Nation on September 06, 2010:

September 6, 2010: "Jerry Lewis MDA Telethon raises $58.9 million" (AP)

Patty Inglish MS (author) from USA and Asgardia, the First Space Nation on September 02, 2008:

I did, indeed, watch the Telethon in 2008, but coverage did not begin locally until the small hours of the morning. It was eerie how Labor Day, the Republican National Convention and Hurricane Gus coincided. And I am happy that the governments and CBOs were so much more organized for this storm.

Hope everyone had a good weekend!

Patty

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