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Jerry Lewis And The Labor Day Telethon: A One Man Show Of False Hope

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This is the second in a series of three articles about Jerry Lewis and the Muscular Dystrophy Association.

In part one, I spoke about the promises that the Muscular Dystrophy Association makes to both the people who donate the money that supports the organization and the individuals who live with Muscular Dystrophy every day.

Let us now turn to information about the Labor Day Telethon and Jerry Lewis before moving to the third article, which is a much more personal look at the MDA from the standpoint of a life partner, caretaker, and best friend to a wonderful 25-year-old male with Muscular Dystrophy, my boyfriend Dominick.

The Telethon

MDA runs an annual telethon, which could mean the chance to shine, if you are a child, on a national or at least a local level. It is one of the many ways that MDA raises money throughout the year, though they make it seem as if it is the only way. During the year, there are numerous events which add to the collective pot-o-money that the MDA makes. The telethon is just the best-known fundraising event and gives fundraisers the chance to brag about how much they have given to MDA this year.

This is the number one reason Jerry’s Orphans do not support the MDA. The telethon is there to raise money and, according to Jerry Lewis, unless the MDA evokes pity for the disabled, they will not make any money to help them. (Jerry’s Orphans are a group that feels the MDA telethon promotes a message of pity and weakness among the disabled.)

Unfortunately, that means many children are exploited for their beauty and/or their wheelchair. If they are able to walk, many of these children stand and listen in horror as Jerry explains that they will never be normal despite their current abilities. These children will always be different and there is no real hope for them without the support of the able-bodied money-giving person.

Anyone who has watched the telethon has heard Jerry’s spiel. Imagine how these children feel when they hear it. To some, it becomes second nature. To most, they assume it is their reality.

Many children fight so hard for the MDA because they really do believe what the MDA says. They are different, they need help, and they are nothing without you. The sad fact of the matter is that this message of pity only perpetuates self-pity in the disabled community. This is supported by the fact that 70% of the disabled community is unemployed or they lack the skills to become gainfully employed.

One only needs to look at the telethon to understand how a child could grow up and be unwilling to face the challenges of being different in a cruel and taunting world. When organizations like MDA make children listen to this and beg for a “normal” person’s help, it sends the message that they are not normal. It sends the message that they are worth nothing. So, when it comes time to become something, what else are they going to do but sit in their house and wait to die? According to the telethons each year, that is all many of them can do.

Additionally, the money raised by the telethon is more for finding a cure than it is for extending the quality of life a person has. Why not split the money? The MDA is so quick to offer statistics about when people are going to die and how many people’s lives this disease affects, so why not make their lives better while they are here?

I think most disabled people would appreciate the fact that they have a chance to live in a house without barriers or have specific equipment or care that insurance will not pay for that they obviously need. A cure is nice, but if you think you are going to die, and you know how you are going to die when you do, then the idea of spending millions in research for years on end with no cure in sight before you die is not a comforting thought.

The Cost of MDA

MDA is one of the most wealthy privately-owned charity organizations. They receive millions of dollars per year. In fact, their total assets for last year were $215,198,168.

If you consider all things logically, it would be simple to split this money between research, care, equipment, and summer camps. Even if you only helped those in some areas based on the most need you would still be able to better the situations of many people.

However, charities cost money to run. It is currently unclear just how much money MDA brings in and spends for certain. The information presented here is only as correct as MDA has presented it, but there have been questions in the past about their funding and spending practices. Of course, it is rare for MDA to make their financial information readily available when requested.

Their financial discrepancies are clear when you compare totals listed in this article and examine the Better Business Bureau’s charity report on MDA. Of course, it could just be that this has not been updated since March of 2005.

It is known that the CEO of MDA makes $399,321 annually. To give you an idea of how much money that is to a disabled person, you could buy at least 16 top of the line wheelchairs ($25,000 a piece) with that money. Additionally, over $12 million is spent on paying all of MDA employees. At least 1,355 people are paid to work for MDA while the rest, many disabled themselves or families of disabled people, are not paid for their time or hard work. Additional costs can be viewed here.

Disabled people receive numerous flyers per year from the MDA begging for money. This seems a bit odd considering that the money is supposedly being raised to help them. Other mail sent is to ask for help in fundraising by working at events and the telethons because their paid staff cannot do everything.

The Spokesman

Jerry Lewis is known for being a comedian and actor, but he is also known for his MDA telethons. Jerry has worked tirelessly for the disabled community in hopes of finding a cure. However, Jerry has also cut down and demoralized the disabled, likening them to people that are less than human because they are not normal.

In an article written by Lewis entitled “If I Had Muscular Dystrophy”, he explains how he would feel if he woke up tomorrow in that steel imprisonment that is a wheelchair. He goes on to explain that he would be worn out relatively quickly because most homes have far too many barriers for the disabled. I think all disabled and aware able-bodied individuals could agree with that. The problem, and perhaps the true colors of Mr. Lewis, arrives later in the article when he says things that most people will not admit to thinking.

I know the courage it takes to get on the court with other cripples and play wheelchair basketball, but I'm not as fortunate as they are, and I bet I'm in the majority. I'd like to play basketball like normal, healthy, vital, and energetic people. I really don't want the substitute. I just can't half-do anything — either it's all the way, or forget it. That's a rough way to think in my position. When I sit back and think a little more rationally, I realize my life is half, so I must learn to do things halfway. I just have to learn to try to be good at being a half a person … and get on with my life.

It becomes questionable why Jerry Lewis is helping these half-people. One might assume it was to further his career or to make himself feel good. After all, many able-bodied people believe they are good people because they help that wheelchair-bound woman get her Coco Puffs on the shelf she can’t reach. The truth of the matter is that these actions do not make you a good person.

Good people do things because they want to help people, not because they want something out of it. Based on the things we have heard about Jerry Lewis, we can only assume he helps people just to say he helps them, not because he values their input or their lives. If he were to do that, he would have to see them as complete people and not genetically mutated individuals.

If this were one isolated incident, people might assume that Jerry was just going off on a mid-life crisis or was not having a good day, but has since recovered. Unfortunately, that article set many disabled people off and Jerry has not taken to criticism kindly.

When disabled picketers arrive at MDA-sponsored events, Jerry has a tendency to be unfriendly. In the past, he has informed the disabled community not to leave their homes if they do not want pity. And just recently, he referred to a woman in a wheelchair as a “living waterbed.”

Many in the disabled community want Jerry Lewis removed from the MDA for his comments and his actions towards the disabled. Many able-bodied people think the disabled should shut up and graciously accept all that Jerry has done for them.

Meanwhile, I sit on the other side of the fence. I am able-bodied for myself and for someone I love. I am my own legs and Dominick’s, too. I think MDA needs to be reworked drastically because the focus on the disabled is gone. The telethon and the MDA were never meant to be about Jerry Lewis, bigotry, or discrimination.

MDA was meant to be an organization to help people that were disabled no matter who you are or how old you are. Sadly, those days are gone and until they are back again, I will continue voicing my distaste in hopes that the voices of those with Muscular Dystrophy will be heard.

Written with the help and guidance of Dominick Evans.

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About Ashtyn

  • Personal attacks are not allowed?? I have no personal attacks to offer. How do I know that the attacks on Jerry Lewis are true?

  • This is a new one on Me, but I wish we would have been able to add this. We’ve now been compared to Hezbollah or Iraqi terrorists by Jerry Lewis.

    “In an interview last week with the Tribune at the South Coast hotel-ca$ino, Lewis said he has no intention of making peace with his detractors. He likened the idea of meeting with them to entertaining Hezbollah or insurgents in Iraq.

    “Oh God, why should I?” he asked.”

  • Jackie,

    You can click the links to see sources where this information came from. It is not meant to be a personal attack. It is meant to bring light to a situation that the MDA has been trying to cover up since the 1990’s.

    Fact – Jerry Lewis admits he wrote the Parade article.

    Fact – You can find numerous sources and recordings of Jerry Lewis calling disabled protesters “cripples” and “living water beds”.

    He also claims he bought us all wheelchairs.

    Jerry did not buy my first two wheelchairs for me. He only bought the third, used wheelchair…or rather MDA did….after months and years of begging MDA for help. Unfortunately it was too late and I spend more time in bed then out…due to damage from the old wheelchair.

    THAT is a FACT.

    I am a former MDA Poster Child for NW Ohio and State of Ohio. I gave my life to MDA from 1990-1999. I probably would have continued to give, but once I wasn’t “profitable” enough they stopped inviting me to events or the telethon in lieu of more air time to “new kids”.

    Frankly, after helping to raise thousands of dollars, I am saddened I wasted my youth on MDA only to have them turn their backs on me when I needed them the most.

    I would hate to see this happen to the new kids representing MDA…and unfortunately I’m not the only poster child who feels that way. (Look up Laura Hershey).

  • The fact you gave your life to MDA from 1990 thru 1999 gives you and your opinions a tremendous amount of credibility. Nevertheless I felt things were being overlooked by this article.

    From the MDA website: The first incarnation of what would be the MDA Telethon was in the form of a series of specials produced in the 1950s, some featuring Jerry Lewis with partner Dean Martin.

    The first Telethon was held in June 1955 at Carnegie Hall in New York.

    The first MDA Labor Day Telethon was broadcast in 1966 by one station in New York City.

    Jerry Lewis is an old school guy, who’s been doing this since the 50’s. By anybody’s account, the man is arrogant and always has been. He’s also someone with tremendous talent and a tremendous will who has been a force to be reckoned with for a very long, long time.

    He’s blunt, he thinks he knows how to do things, and there’s exactly one thing that will stop him, and only one. His death.

    Most of his fiercest critics will not do one thousandth of what he’s done to make a difference, even as they bemoan the fact that what he has done isn’t what they would’ve done, if only, if only.

    The man has been humbled, if in fact that’s possible, by illness, infirmity, and disease, and he won’t be around much longer to irritate the shit out of you, and those who feel likewise.

    At least you have that.

  • Here is more comments Jerry has made. I don’t know how reliable Vanity Fair is for you, but I’m sure the article can be found at the library.

    Additionally, I think I have the 91 telethon on tape, but aren’t sure I have the whole thing. I’ll have to look since my dad used to tape the years when I was poster child…and I was for NW Ohio in 91.

    During the 1991 MDA Telethon, Lewis said that if a person is diagnosed with the disability called amyotrophic lateral sclerosis (ALS):
    “You might as well put a gun in your mouth.”

    The following quotes come from Leslie Bennetts’ article, “Jerry v. the Kids,” Vanity Fair, September 1993:

    About his critics: “It just kills me to think about these people getting publicity. These people are leeches. They all glommed on to being Jerry-bashers. What did they have before that? They’re disabled people who are so bitter at the bad hand they’ve been dealt that they have to take down somebody who’s doing good. There’s 19 of them, but these people can hurt what I have built for 45 years. There’s a million and a half people who depend on what I do!

    “I’ve raised one billion three hundred million dollars. These 19 people don’t want me to do that. They want me to stop now? Fuck them. Do it in caps. FUCK THEM.”

    I bet he wasn’t saying that when we were all poster children raising money for him. You can check out this link from former poster child Laura Hershey.

  • Jack,

    I don’t wish for Jerry to be dead. I don’t hate him. I just feel that he has been very negative in his portrayal of people with disabilities.

    If it had been any other celebrity saying something about another minority group (just look at the Mel Gibson debacle), Jerry would be held accountable for his actions.

    Yet the answer by CBS was to re-edit his appearance to show it again and take out his hurtful comments rather than call him on it.

    Now he’s comparing meeting with the disabled to meeting with Iraqi terrorists. I am not a terrorist nor have I ever been one and it somewhat offends me that he would view me as a terrorist threat to his telethon.

    In an ideal world Jerry would be held accountable for blantant discrimination.

    Try putting yourself in our shoes. What if you were in a wheelchair, were discriminated against, and left to hang high and dry.

    How would you feel if someone told you…well all the “good” the MDA says he does outweighs the bad he has caused you or the lies they have told you?

    You’d probably be pretty pissed off.

    I’m also looking at the fact that there are drugs to help AIDS patients, cancer, and my other afflictions but the cure we’ve been promised is nowhere near being found.

    I personally feel stem cells are the answer though that cannot really be explored, but any time MDA does research it seems they want to give the trials to children not someone who is 25 and for all intents and purposes will probably be dead since this is a “death sentence” right?

    Perhaps they already have a cure, but its more profitable to not have one? Who knows? That is one of my own theories, but over 50 years of fundraising and billions of dollars later there isn’t even a drug that is showing promise?

    As for the website, I don’t give it much credibility. If you notice the wheelchair accessible van picture on the equipment page it makes you think that they give you vans right?

    MDA does not pay for the purchase of accessible vans or even modifications. In my opinion, the picture is false advertising.


  • Abel

    I understand why you wrote this article. You must feel bitter about how you were treated.

    The reality in short is that Jerry Lewis has done a tremendous amount for the cause. He may be crass or narrow in his thought on the matter of what it is to be disabled. But, still the same, I believe, he has sincerely tried to make a difference in his fight to help find a cure.

    As for MDA, the idea of throwing money at things is not new. Lewis and pro-telethoners are doing it because that is what they believe will work. Is MDA perfect, I don’t know that. One thing is for sure, I believe they as a whole have tried to do good. That should be worth something. Has no one ever been help by MDA?

    Look, to berade Lewis, the MDA and other such organizations seems counter productive. Your bitterness is very transparent, but again completely understood. I guess, I can only offer that you should try to be the bigger person and have compassion for those that are working to make a difference.

  • I doubt ol’ “Do It In CAPS” Jerry would’ve wanted his commentary to be whitewashed by CBS. I think we’ve learned a lot about CBS in the last couple of years – they’re currently struggling to regain some credibility.

    I’m not sure how I’d feel in a similar position. I know I wish at least a hundredth of that attention could be focused on Parkinson’s Disease, a degenerative disease that claimed my father. I’m pretty sure I wouldn’t suspect the MDA of hiding a cure, though.

    Nevertheless I think you make a number of good points and I can’t say I blame you for feeling marginalized and insulted by Mr. Lewis.

    I believe a cure will be found for MD, Parksinson’s, Alzheimer’s, AIDS, cancer, all of that. It’s our final frontier. It’s going to happen.

  • Again, the criticisms in this article are largely baseless. You’re mostly just making a scattershot statement of resentment.

    Now, the idea of playing on pity is not appealing, and could have some negative repercussions. But then, you’re playing to the same stuff- just not willing to admit it.

    A lot of this comes down to personal resentment against Jerry Lewis. Why, cause he doesn’t do enough? I don’t doubt that Lewis takes some personal satisfaction and good feelings from his effort. Good- he deserves that much reward for raising billions of dollars.

    This philosophical premise is specifically wrong: “Good people do things because they want to help people, not because they want something out of it.” That is flatly against human nature. You might hope for “somethings” other than money – I doubt this effort is makes Jerry Lewis any personal profit. But a warm fuzzy feeling in your heart is certainly an appropriate reward for making the effort.

    You also resent him for saying or implying that disabled people are disabled. That’s just shooting the messenger. How dare he suggest that people in wheelchairs with crippling diseases don’t get to lead complete and fulfilling lives like the rest of us? It’s unfair and unfortunate – but nonetheless true. Perhaps he should apologize for noticing. Hey, he’s trying his best to do something about it.

    Then there’s the money stuff. You’re making lots of little insidious implications, but saying nearly nothing. The only real specific complaint is that they pay the guy who runs the organization $400K. Why, you could be spending that on Dominick!

    Perhaps you need a little perspective. Putting pity for your poor guy aside – as you would supposedly advocate – perhaps the entire MDA doesn’t revolve around him.

    $400K is not that much to pay for a top quality manager to run a company with hundreds of millions of dollars a year running through it. You COULD get someone to take the job for $30K – but then you’d likely not be getting the best person for the job, would you? Some dumbass that you could hire for a little of nothing would cost a lot more than $400K in any number of directions.

    You’re just completely 100% off base to resent that the organization emphasizes spending money on research more than on current people with these diseases. Did I mention that the world does not in fact revolve around your no-doubt wonderful Dominick?

    It might be better for Dominick if Jerry re-named his event the Dominick Telethon, dedicated to raising money for Dominick. That’d be nice.

    But maybe, just maybe, they judge it better to spend a lot of the money coming in on trying to find cures that will save millions of people in the future from suffering rather than bleeding their limited resources dry on helping a few thousand people now who are already screwed.

    You’re bitching about pity, but that’s exactly what you’re playing to here. The better rational judgment of how their resources can do the most good should be thrown out the window for Dominick, cause he’s suffering now. I, of course, am a heartless bastard for making such criticism – don’t I have any pity? No, not if pity for this one unfortunate schmoe is going to end up hurting a bunch of other people.

    If your words here cause anyone to not donate to MDA, then you’re just cutting off your nose to spite your face. You’ll be hurting their ability to help people now – and sentencing people yet unborn to suffering from illness that the MDA could be curing. From anything I’ve seen in parts I and II of your expose, you and Jerry’s Orphans are doing a disservice to sick and disabled people.

  • RogerMDillon

    Got agree with Al on this one.

    How much money have Jerry’s Orphans raised compared to Jerry? Why don’t you start your own telethon if you think he’s doing it wrong? Instead of complaining about Jerry, show us a new model that works better. All I saw here was complaints.

    Using pity might suck, but unless you can show a better way to raise money, he’s probably going to stick with it. If he said, these kids will have great lives, no different from you or me, the average person watching will think, “if this kid is going to have the same life as me, why should I bother giving money?” Also, couldn’t you tell the kids what the score is, so they don’t develop self-pity?

    “Children expolited for their beauty”. Jerry didn’t invent that. Society has done this since there’s been children, and it happens to adults as well.

    I hope Jerry’s Orphans have paid back all the money they received through MDA, so their convictions can be taken seriously.

  • Roger,

    Actually I have started work on an organization to help raise money. My goal is to make a true non-profit run by non-paid volunteers.

    One day I hope to have a program that:

    # Medical Equipment – Funding for wheelchairs, hoyer lifts, van ramps, walkers, leg braces, commodes, bath chairs, etc.

    # Technological Equipment – Adapted computer software, keyboards, mice, screens, voice automated software, automatic door locks, etc.

    # Camp – Camp for both children and adults with Muscular Dystrophy.

    # Care Services – Volunteer emergency care if needed in the community you live in.

    # Medical Services – A special clinic for eye exams, dentists, and other medican services that cannot be performed in the average doctor’s office.

    # Transportation Services – Annual Van Purchasing assistance, wheelchair accessible transport.

    # Advocate Services – Helping indivdiuals that have been discriminated against find legal council or the right agency where they can advocate for their rights.

    # Emotional Support – Psychological Services, Support Groups, Community Awareness Programs.

    # Home Modifications – Bathrooms, Kitchens, Door widths, Grab Bars, voice automated services, ramps, etc.

    I’m just getting started and due to health problems that keep me in bed most of the time, haven’t been able to get as much going as I would like, but I won’t give up.


  • RogerMDillon

    Good luck with your efforts, D.

  • Roger,

    Thank you! I am very determined and willing to work hard to get things going. I don’t want anyone to think all we do is just sit and complain without trying to make a difference and change things.

    I also don’t want to be considered half a person because I’m not. I can do just as much as the abled-bodied people in the world can if not more. I just do it differently and adapt to the changes.

    I’ve developed an “I can” attitude but feel MDA has profitted off of the “I can’t” model.

    If you saw some of the extraoridinary things people in wheelchairs are doing you’d be amazed. Why can’t they use those things to get money? Without equipment that works we have less opportunity BUT amazing potential….that is wasted.

    Instead of saying there is no potential there at all which is what MDA does.


  • Good luck Dominick, but you’re never, ever going to have a serious major organization without anyone getting paid. Right there, you’re just not dealing with reality. You might find people who are not particularly motivated by money – and I don’t see any indication that that Jerry’s people are so motivated.

    Nonetheless, even kind hearted folk with love in their heart have to eat. You might find people willing to work for less than commercial wages. That’s real nice. Still, they have to pay rent. Or do you think that non-professionals with outside jobs dinking around for a few hours a week on the side can seriously and properly run a major organization?

    At some point, this stuff IS business. There’s money and contracts, and if you’re going to do any good, it has to be run like one. You may resent that people need to be paid, but which is more important: your philosophical satisfaction that nobody’s getting paid, or actually doing the most good possible for sick people?

    Bind not the mouths of the oxen that tread the grain.

  • Abel,

    I didn’t write this and neither of us our bitter. If Ashtyn was, she would have listed a more personal take on her feelings of Jerry Lewis as a man.

    Instead, she tried to present the facts and her take on his actions as opposed to Jerry as a person.

    If Jerry were …the spokesperson of the NAACP and made racist comments I bet complaints would have gone through the roof.

    Its about equality and the MDA perpetuates the disabled are second class citizens stereotypes.

    I’m not half. I am not bitter I am in a chair. I never have been. In fact, I’d rather it be me then someone else who would not be able to handle it. I’m strong and a fighter and will deal with anything and everything that comes my way, but I will not accept pity. I don’t want it.

    None of us do.


  • Al,

    I wouldn’t take a dime myself. I understand that people in big organizations do get paid. However, there are ways around it. You can maximize a profit and other organizations have succeeded at doing so.

    Perhaps I will prove you wrong or perhaps not, but know that if I ever did have to pay employees it would be extremely limited.

    With enough volunteers anything is possible and if I have to do everything planning wise myself then I’ll do it myself. I’ve worked tirelessly on fundraisers before. It won’t be any different because I didn’t get paid then either.

    I luckily enough have a RT job that is flexible enough to devote what time I can to all the different things I want to accomplish in my life.


  • TOM

    I have epilepsy understand your how you feel but I would be very happy if someone like Jerry Lewis would come along and raise money for Epilepsy to find a cure,

  • Ruvy in Jerusalem


    A curee for epilepsy will be found through the application of stem cell therapy to the brain, because epilepsy is usually the result of a brain injury resulting in an electrical imbalance in the brain. The seizures are symptoms of the imbalances, sort of an electrical surge running through the brain.

    If stem cells can be developed that will grow into brain cells that effectively heal the brain injury, then hopefully, the imbalance will be removed.

    The question is whether someone will be able to get the proper funding to do the proper research for this. Drug companies make a fortune off of anti-seizure medication, and may well oppose such studies…

  • Nancy

    With the huge amounts of money this organization has suckered in over the years, by now MD should be an extinct disease, with cures and preventions. This entire so-called “charity” is nothing more than just another scam that uses the disabled to rake in big bucks so those in charge can continue to live on the scale to which they’ve become accustomed. Jerry Lewis should be ashamed to be associated with this farce, let alone cheerleading it.

  • Nancy,

    Leslie Bennetts did a article on Jerry Lewis and it went quite in depth into both sides of the “Jerry’s Kids” and “Jerry’s Orphans” debate.

    One interesting point Ms. Bennetts (of the New York Times) made was discussion of what Jerry gets out of being the sponsor.

    All they could determine was while he does an awful lot of travel, the MDA does not have the “figures” available to show how much actually goes to Jerry’s travel expenses.

    I’d love to see those numbers.

    You can check out a copy of the article here:

    Its a must read in my opinion.


  • Nancy

    As I said, with the enormous amounts of money they’ve garnered over the years – the W.P. reported this morning that they’ve taken in a total of over 1.3 BILLION over the past 40 years – they ought to have a cure by now. I suspect they aren’t trying very hard, because when & if they ever do come up with one, they’ll all be out of an easy & comfortable way of life. This and all other ‘charities’ like them ought to be shot down by the IRS.

  • Braniff

    I’m surprised there’s been relatively little investigative reporting by the news media. Were such investigative reporters as Bartlett and Steele (longtime reporters of the Philadelphia Inquirer), R. W. Apple, or especially Bob Woodward, Carl Bernstein and Scott Armstrong (with the Washington Post), looking into how the Muscular Dystrophy Association and other charities were spending our money (that’s right–OUR MONEY), perhaps there’s be some change. But the people who run the telethons, the entertainment people and the business people have lots of clout–enough to keep the investigations under control.

    Moreover, I fear that the public would not care as much as they did during the days of the Watergate, Iran-Contra and CIA scandals.

  • Nancy

    Well, look at the fraud & misdirection by even such previously respected organizations as the Red Cross (using 9/11 donations to defray organizational business expenses) and more notoriously United Way. It seems to me that any organization that spends less than 85% of its funding on administration should have its 501 status yanked, and fast. And no, there is NO justification for paying the CEOs or any other personnel top dollar. Presumably, they work there not for profit but for the cause. If they’re there for the income, they’re in the wrong business & shouldn’t be there. Charities should not be run just like any other [for-profit] corporate organization, because they’re NOT.

  • Whoops – that link didn’t work that I provided.

    When you click the link up above for the story it is under Z-ARTICLES from the Web. It’s called Jerry vs. The Kids

    Or you can look up Jerry vs. the Kids by Leslie Bennetts to get to it.

    Nancy – I am glad to see Ash & I are not alone in our beliefs of why there wouldn’t be a cure….MDA would go out of business.


  • Martin Lav

    Jerry Lewis is a bloated old ego-maniac that has the ability to suck the blood out of a turnip that he helped to create. While I have no doubt he is insensitive, egotistical and rude, he does have the power of draw and although you’d much prefer to throw up on his shoes, you’d do well to fall on his feet.

  • Ruvy in Jerusalem

    Nancy @ comment #24;

    I don’t disagree with you – but a yuppie culture of “professionalism” has overtaken the “managerial” class of the charitable organizations. I’ve seen this with my one eyes as a board member of a non profit in St. Paul. When these yuppies die out or retire – whichever comes first – we may see a change in the behavior of charities. Don’t hold your breath.

  • Ruvy,

    Do you think awareness of these boards’ spending habits will have any effect on what kind of money they are making?

    I have donated plenty of my own money as well as helped raise money and I, personally, want to know my money IS going for a good purpose and not being abused or sent to pay something other than what is promised.

    If people start realizing these charities are abusing the money will the people stop giving or will it be more of a “moral obligation” type of thing where they disapprove, but giving something is better than nothing?


  • Jude

    This is my first time posting, so bear with me. My 27 year old son has muscular dystrophy. He was diagnosed at age nine. After years of MDA clinic visits, the “experts” still do not know what type of dystrophy he has. He uses a power wheelchair for mobility and he also uses a manual wheelchair for exercise and to keep his arms and upper body mobile. MDA paid $2000 on his first wheelchair, which cost us $28,000. We had no input from the doctors or MDA as to what features he would need or how to set up his wheelchair to benefit his health…he spent one year on researching a wheelchair before he made a decision. We, as a family, had no guidance and were totally lost on where to turn or what to do. We were manipulated and exploited by the DME suppliers, which tried to put him in the cheapest, run-of-the-mill (more profitable to them) wheelchairs. Lucky for us, Erik is brilliant and takes a very active interest in his own well-being. He did manage to secure a top of the line wheelchair that was well-suited to his health needs at that time, but he had to do all his own research, write letters, etc. with no help from anyone.

    When he needed a second wheelchair, it had to be his Christmas gift one year, because we had to pay out of pocket for it. He still needs power-assist wheels for it, but that is another big expense that we cannot afford right now.

    He needed a suitable vehicle for transport and we paid out of pocket for that, as well. No financial assistance was given because our county only offers help to “mentally challenged” individuals. The list goes on and on, with no financial help from MDA. In fact, in the 18 years Erik has had muscular dystrophy, we have received benefits of the $2,000 for the first chair and one clinic visit per year at a cost to MDA of $25 per visit. Yes, MDA could provide more financial assistance to help the people living with these diseases. They could use some of the money to fight for disability rights and to raise awareness about accessibility issues (which I feel is the biggest deterent to living a normal life.)But, the money is given to research and to “run” the agency. And we all know how wasteful that can be.

    I do feel that the kids are somewhat exploited by Jerry Lewis and the telethon. Erik participated when he was a kid and did some local TV, fundraising, etc. In hindsight, I probably wouldn’t advocate the exposure to the “pity party.” When a young family is suddenly confronted by a disease such as this, one is overwhelmed and easily exploited. As you gain knowledge and learn to live with the disease, you make smarter choices.

    Bottom line is this: “Disabled” people are not “half-people.” Erik is full of life, fun loving, smart, handsome, out-going, productive, insightful, spiritual, active, a great cook, a passionate environmentalist…I could go on and on with positive attributes. It is a priviledge to know him and his joy and enthusiasm for life is positively astounding. He is a full member of the human race who just happens to not be as strong or mobile as some others. His life is certainly not pitiful and is in some ways enviable.

    Jerry Lewis does use the “pity factor”, but one cannot deny that using that brings in more bucks. I think if Jerry Lewis opened his mind to learn from the people living with disabling conditions, then he wouldn’t have the thoughts that he expressed in the Parade article. Insight comes from experience and wanting to understand, and maybe his ego is getting in the way. He probably does see disabled people as “half-people” and that is sad for him. He has done some good things for MD research and without him there wouldn’t be all the attention and money raised…of that, I am certain. He is high-profile and that’s what brings in the money. But, I want people out there to know that the average family who is dealing with a neuromuscular disease does not directly benefit from the millions raised. We struggle financially, because special accessibility is expensive.

    I choose not to watch or participate in the telethon anymore. I wish parents of children with muscular dystrophy would choose not to let their children be exploited for the sake of raising money for research, but I can understand the overwhelming desire for a cure, especially when you’re first confronted with this disabling disease.

  • Wow! Thanks Jude…that’s pretty much an eye opener for me…I had different ideas about where all that telethon money went.

  • Jude,

    That was an excellent post. Erik sounds like a great guy and I truly understand the financial struggles you are going through. I wish I could be of help to you, but right now I am just getting started on my quest to start an organization that actually helps people out financially as well as advocates for the rights of the disabled.

    Perhaps one day I can be as successful as MDA, though I would rather shut down an organization then have it become as corrupt as the MDA seems to have become.


  • MDA Guy

    Revenue and Expenses: Fiscal Year Ending March 31, 2005

    Contributions $173,059,035
    Government Grants $0
    Program Services $0
    Investments $12,824,780
    Special Events $0
    Sales $0
    Other $564,645
    Total Revenue $186,448,460

    Program Services $134,321,766
    Administration $12,817,861
    Other $28,574,306
    Total Expenditures $175,713,933

    NET GAIN/LOSS $10,734,527

    Do the math, only about 22.2% of total revenues go toward Admin and General Expenses… 76.444% of TOTAL REVENUES go towards PROGRAMS AND SERVICES. That is very good in a business standpoint. To say that MDA is lining their pockets and stiffing the kids is completely untrue! To the people who think that the mda is exploiting kids for personal gain, I would like to see you bring another company that operates at this scale with better expense margins.

    Its obvious that the people who are bitching about the MDA have no clue on what it takes to run a organization. guidestar.org

  • Martin Lav

    But they accuse Jerry of using them to get them money, which he does and does well, and then they call it victimizing the victims and then victimize themselves. Jerry is a big fat ass and one that brings in the dough, so I’d say give him a lot of latitude.

  • MDA Guy

    The people donate and volunteer because of the cause, not because of Jerry Lewis. He is a figurehead in the organization that is there to spread awareness about MD so that more people will donate to fund research and find a cure. I not sure how many people know this, but a few months ago the mda got approval for a vaccine for Pompei disease, one of the diseases covered by the MDA, to be tested on people. There are clinical trials going on right now for DMD and other types of MD. At the MDA, you also have the option to tag your donation to go towards a certian fund for the MDA, so if you wanted your donation to go towards the services or Research, the option is open.

  • MDA Guy –

    Then why have so many people come and said the MDA didn’t help them? Why are there organizations like MDFF (Muscular Dystrophy Family Foundaiton), and individual organizations for each diseases to do their “own research” becauase MDA doesn’t seem to be doing it fast enough?

    They can say they spent it on programs and equipment and what not, but asking those of us who need the equipment where it is…we’re finding they either didn’t help with squat or helped with a very limited amount.

    For instance…I asked a friend recently what MDA donated for her wheelchair. They bought her lift elevator but her insurance had to pay everything else.

    MDA tells people on the telethon they BUY wheelchairs. As if to imply they buy the whole thing. That is false advertising as I mentioned before.

    Hell…when I was on the telethon as poster child we used to have times when we’d “pay for a wheelchair”. Back then a power chair cost about $5000. So, they would have people call in and once they had enough for $5000 they’d say….”yea! we bought 1 whelechair!”

    They aren’t buying the wheelchairs though…..so don’t you think people need to know the truth so they can decide if their hard earned money is still worth the cause?


  • Nancy

    22% is NOT “very good” in a business, and it’s even less acceptable in a SUPPOSEDLY non-profit charity. It means somebody is getting paid ‘way too much & living ‘way too high on the hog, or at the least running way to expensive an operation, whether because of deluxe office fittings, or what is moot. Recommended admin levels for non-profit charities by most organizations devoted to monitoring charities is, at MOST, 12% – NOT 22!

  • MDA Guy,

    So, 22% of charitable funds used for administration purposes are reasonable? A $400,000 salary for one person is also reasonable, right? You’ve got to be kidding me. You can say I don’t know what it takes to run an organization but I do know what it takes to do research.

    Where do the millions go each year that are unaccounted for? MDA can’t tell you. They’ve been interviewed and they just don’t know. They also don’t know how much money Jerry spends though it’s been said that he travels on them and he travels in style.

    Oh and by the way. I quoted those reports too and if you go digging you’ll find other figures elsewhere. It’s not been confirmed how correct those figures are and it’s doubtful if even they know.

    Thanks for posting!

  • MDA Guy

    Nancy and Ashtyn,

    Where is your proof, I asked to see a company of comparable size running at smaller expense margins. If you knew anything about business, you would know that in almost all cases Wages and Salary are the biggest expense of a company. The 22% I quoted included General expenses also, the actual expense for administrative is around 7.3%.

  • MDA Guy


    I want to see you put out an ad for a qualified CEO who will run an organization that is in charge of 180 million dollar annual budget and see if he will do for free… good luck, I can see the offers pouring in now…. Ha, your org will crash within a month….

  • MDA Guy

    The MDA funds roughly 400 research grants across the world in trying to find a cures… This costs alot of money, hello it costs $65 a minute. These costs are not because the MDA is funding its own people to do the research, it uses universities and researchers from top companys and campuses through grant requests submitted to the MDA. These requests are then looked over and carefully picked by scientists to make sure that the money is not wasted.

    I see you did you research alright, did you look as far as your inbox of your email to find your answers. Is your reseach primary or secondary?? By the way mine is primary, if you know what that is….

    Give me a break, you make allegations and can’t back them up. If it wasnt for the MDA most of the research out there would be 50 years old and the doctors probably couldn’t even diagnose your MD. You should be thanking them, because believe it or not, Their research is what doctors all over the world look to when comming accross this disease!

  • MDA Guy – I wouldn’t thank MDA for anything. Whoop di do…they diagnosed my MD….incorrectly!

    How many people get the wrong diagnosis?

    I did…I was told I had Werdnig Hoffman – a FATAL form of SMA. I have tons of newspaper articles from both the 80’s and 90’s LISTING the info which was provided by MDA on my disease. They would send out the press release on me and the “Werdnig Hoffman” I had…to the press when I was poster child.

    They were wrong and rediagnosed me mutliple times. Now I have SMA III. Had I not done my own research and diagnosed “Myself” and suggested the SMA III to them they wouldn’t have taken another look when I “lived” past the time when most with SMA of the type they said I had seemed to die….

    I have a friend who was diagnosed. She’s 23 years old and they just informed her last year…that it was the WRONG diagnosis. They were treating her for one type but it only happens in boys so whoops!

    I’ve heard many say MDA doesn’t even diagnose them because they “don’t know” what type of MD they have.

    So, from primary sources (MYSELF) I can tell you that MD doesn’t even always give a diagnosis correctly. Some research huh….Sounds 50 years old to Me…


  • MDA Guy

    Well, if it wasn’t for the MDA, you probably wouldn’t have the option of SMA III, and there would be no know type of treatment or rehabilitation for the disease to begin with. Your shooting your self in the foot with all your rants. Where did you get the information to diagnose your disease (YOURSELF)??? could it have come from the Millions of dollars that MDA has raised over the years to fund grants that lead to the discovery of the cause of the disease from which you are suffering from??? hmmmmm, He calls himself one of Jerry’s Orphans and yet complains that he is not given the dignity of being able to be seen as self reliant. Which one is it, do you want attention from Jerry again or do you want to be independent like the rest of us. All I’m doing is pointing out your hypocrisy in your arguments.

  • MDA Guy

    Also, MDA is not the ones who does the diagnosis of the family members. Doctors who are experts in the fields with clinics that are funded by MDA are the ones who do diagnosis on MD patients. You don’t even know that, but you blame Jerry and MDA for what you think went wrong. Also, Big deal the MDA doesn’t send kids over 21 to camp, grow up big boy. If you want to go to camp pay for it yourself since you are such a capable person who doesn’t need the MDA. This is fun, bring it on, I want to see what you will say next.

    Also, Why should MDA pay for your wheelchair if in fact the persons insurance will cover it. This is a organization that wants to help as many people as possible, this is not done by giving away money to people who can get it done though other means. MDA covers within their buget to people who don’t have the means to get it by themself.

  • At the time I needed a wheelchair my insurance wouldn’t pay for it, and MDA claims they do pay. The point is MDA lies.

    Kugelberg-Welander is another name for SMA III. It was discovered in the 1950’s by Swedish neurologists. I highly doubt back then MDA was footing the bill for the diagnosis for the disease.

    I remember when adults used to go to MDA camp with us. It was a much needed vacation for them and it gave us mentors to look up to as well as hope of a future.

    The only hypocrite is you. You claim to know so much about MDA but you really don’t know anything.

    The people who diagnose work for the MDA clinic. It’s called……the MDA Clinic. They represent themselves as MDA doctors. The MDA patient coordinator runs it. If that isn’t MDA then I don’t know what is, but of course I’m sure you know everything about how the clinic is run since you are the “MDA” guy right?

    You should apply to be Jerry’s sidekick. You give those of us with MD so little credit you’d fit right in.


  • MDA Guy

    the doctors at the clinics are not part of the MDA, the MDA are the ones who fund the Clinic… How is that confusing to you??? The doctors are not on MDA Payroll, they give us the bill and the MDA pays it. They are independent specialists which MDA supports, because of there expertise, or did you thing the MDA is in the hospital business to. get your facts straight… Also, who found the defective gene that causes the SMA III where did this come from, Alot of the things you even know about muscles in general are from research funded my MDA Grants. You claim to know alot about the MDA but you still havent given any solid arguments against the MDA. All you are doing is complaining…

    By the way, I saw your margins of that MDFF org, and they have way higher expense margins than the MDA. They are no where close to the efficiency of the MDA. Also, all the office that I have attended have donated office funiture, phones, equipment, etc. How is that wasteful spending, they get it for free. IF you have the guts, go to an MDA office some time and take a look around, Most of all the office stuff was donated and probably doesnt match from office to office. Alot of their expenses are earmarked to oporate at a very low expense margin, and the staff is hounded by the upper management to keep them low.

  • Steven

    I am 27 and I have Duchennes Muscular Dystrophy. I was diagnosed at the age of 4. I was also a local then state poster child for the state of Georgia. I, myself have seen serious cut backs on the things MDA pays for over the years but I have also seen much more progress in research in the last 10 years than I have in the last 20. Research that I believe MDA helped make possible. Is the MDA perfect? No. Is Jerry Lewis perfect? No. Is he using pity to get people to donate? Maybe. However, to say the MDA should fade from existence because of stupid things Jerry Lewis says is short sighted. If you think you can do a better job by all means, do it and count me in!
    Say what you want about Jerry Lewis and his telethon, without him MD would not be as well known (bad publicity is better than no publicity) and the research wouldn’t be getting done. If you had watched the telethon you would know they are currently funding, along with the National Institute of Health, clinical trials on human beings for Becker and Duchennes .
    There’s one other point I would like to make, sma type 3 is far less debilitating than Duchennes and ALS. Anyone that’s in the medical field understands the need for triage. I know that’s a seemingly cold and calculated point to make but there is only so much time in a day. I am by no means saying sma is less important or deserves less attention.

  • Ellen

    All I know is I give to M.S. every year and have always thought Jerry was doing a wonderful job. This year I have been trying to give away a motor wheel chair that cost $5000 and I can’t get anyone to call me so now I question if this is only about money. I want answers.

  • Ruvy in Jerusalem

    Dominick – re: comment #27.

    The only time that board members on a non-profit agency will have a serious say is when THEY are footing the bill. In my case, I was a community representative who was not shovelling thousands into the organization. I represented a minority that wanted to see the community running the organizqtion rather than these overpaid “professionals,” but I was going to get nowhere fast without exposing the director to serious publicity. And he was only making $65,000! I could have done a better job myself for about 75% of that.

    When I finally realized that the director had the majority of the board in his wallet pocket, I started to disengage from the organization and concentrate on details of leaving America to come to Israel.

  • Steven – The point isn’t to get MDA to fade out of existance. It’s to point out the flaws in hopes of people demanding the improvement. People deserve to know their money is going where it is supposed to be. If not, then they should be able to say…change it or I won’t give.

    Jerry Lewis needs to step down. He’s gone way too far, and since he isn’t going to be around much longer anyhow, they need to start preparing for the new generation of MDA.

    No one is disputing they do research. Yes, they do. However, they claim to do so much more then that and they are cutting back more and more on important things.

    I fully agree SMA is different then Duchenne or ALS. I want people with Duchenne and ALS to have what they need, too. One of the closest friends I have has Duchenne, and trust me it was hard growing up and hearing that I might live and all my other friends would probably die. You feel this guilt as a child as being the one that “lived”.

    Of course, I know that isn’t my fault, but My SMA hasn’t followed the average course. I can’t walk. I’m often bed ridden. I’m very sick a lot from respiratory probelms (which they believe is a byproduct of the SMA). So, when I was going to the MDA clinic and they were trying to treat me as a textbook case…I didn’t understand. Most of my friends with SMA III are still walking. We have different needs. My condition is a lot more dystrophic and it makes me wonder if SMA III is even the right diagnosis.

    Irregardless, I am glad to be who I am and proud of my life. I wouldn’t trade it for the world. It has made me much more aware of the needs of others which is why I will FIGHT for everyone with MD to get fair treatment and fair care by the MDA.

    Ellen – I hope you get the answers you deserve!

    Ruvy – That is how it is with these big businesses and its said. That is an excellent idea. Have the community type running the company because inevitably, letting a few choice individuals have all the power. That is why MDA is in the position it is in.

    MDA Guy – I don’t care what you say…any man who makes TWO times what the president of the United States makes is greedy in my opinion.

    $400,000 for the CEO of MDA. He doesn’t deserve that. Hell, the presients budget is in the billion dollar range each year. If he has to make decisions for a whole country and $200,000 is good enough for him, why should someone running one “non-profit” get double that amount?

    BTW I’m not saying I believe Bush deserves more. I meant president in a general sense. You could name any president and I’d still feel the same way. If $200,000 is good enough for them….cut the MDA CEO’s salary in half and buy 10 wheelchairs with the $200,000 that is left.

  • MDA Guy

    Do you really think that the motivation for the President of the US is Money??? bad comparison Dominick…. The President is a position of Power, legacy, and honor, not how much does it pay…

  • The point is that…as the most powerful, important JOB (yes it is a paying job) in the country…its kind of disgusting that the MDA CEO gets paid more for doing less.

    Does he have to deal with missles? Suicide wheelchair bombers? Crazed families who are wondering where their money is going (or why their children died)?

    Oh wait…never mind on the latter…we all know the answer to that one.

    Just call me Dominick “Sheehan” Evans.


  • “The President is a position of Power, legacy, and honor”

    Seriously…do you know who the president is? Perhaps in other countries or back about 40 years ago being the president meant something.

    Now it’s just one big house full of monkeys that don’t quite know how to speak English, balance a budget, or keep a straight face when they lie to people.

    Oh wait…Maybe GWB could apply for a new CEO position when his eight years are up….or he could run the telethon….”Georgie’s Kids” That’d be great wouldn’t it? Of course, he wouldn’t tell us that the money was going to Iraq, stem cells would never be used, and the new requirements for having MD come in the form of a ‘No Disease Left Behind’ test.

    That might make the MDA worse than it is now. Of course, your assuming the presidency is a job of merit and the lowly welfare-paying spot of the MDA CEO is not….makes me wonder if you’re him and looking for a raise. He does so much after all.


  • MDA Guy

    haha….so you are liberal lunatic, its all starting to make sense….

  • Actually, I’m a bit down the middle depending on the issue. I relate to the Jeffersonian Republican philosophy.

    However, if my being a human rights activist means you must call me a liberal lunatic…then so be it.


  • truthdoctor

    hello dominic…i applaud you and your research. i feel the medical system in the u.s.a., is a predatory machine…using drugs,office visits,research and surgery….as a set and proven system of producing a high standard of income for those involved. cures and remedies…..are an after thought, and i feel in many cases actually avoided. as you stated, it would kill the goose which lays them the golden egg. its very sad and very wrong. this process,to give credit where its due, is interwoven with (some)….good things. in recent years the whole corporate system has turned into a street hustle known as “bait and switch”…..promise a dream as the bait and then the switch is what you get in reality. good luck and god bless you.

  • Al Wilson

    Do you know why the Iraq war is still going on? Because the powers that be want it to go on. They’re making big bucks off this mess. It’s all politics….it’s all about money….it’s all about the oil.

    Now, compare that to Sleaze Lewis’ MDA Telethon. His years as an “entertainer” ended years ago when he ticked off Mr. Martin so he figured out how to run the biggest scam in America, the Annual Labor Day Telethon. Personally, I would have figured he was getting a hell of a lot more than $400K out of this, and I’m sure he is.

    Any way you want to cut it, Jerry Lewis is a sleaze ball and I cringe every time I hear the term “Jerry’s Kids”. For forty some odd years, stupid people have allowed this dip to set up shop on their TVs and then actually give him their hard-earned money. Don’t you get it? He’s nothing more than the de-frocked so-called evangelist Jim Baker and Ed MacMahon is Tammy Faye. For years, they have made a fortune off this scam and there isn’t a single drug on the market today that has shown any promise whatsoever.

  • Dr Dreadful

    Well, even if any of those drugs did work, Jerry would likely still be in business. Big organizations like his tend to self-perpetuate.

    Case in point: the March of Dimes was originally set up specifically to combat childhood polio. Once polio was eradicated, rather than disband, the charity changed its focus to childhood diseases in general – thereby all but guaranteeing themselves an indefinite existence, since children will always get sick.

  • prushotaman

    am duchennes muscular dystrophy patient age 29,am frm india,ne one help me to live or guide me for research centres to undertake for their research purposes,hw to get help

  • Kimberly Ann Hill

    I think Jerry is doing a good job. I have 2 boys wit Duchenne MD. I don’t know what I would do if it wasn’t for the MDA. People should be a shame. Money doesn’t grow on trees. Without money there would not be a MDA. Whether we like it not people with disabilities are different. That is why there are laws. The fact that he doesn’t sugar coat it, is a good thing. Children should have hope that a cure is found for what they may have, but you should never lie to them. They should know the truth about everything that is about there disease. All I have read here is complaining. What do you expect to gain from all this. Get a hobby! I haven’t had any bad experiences with the MDA. They have helped a lot. So what if Jerry Lewis is blunt. I don’t see anyone else trying to take his place. I have watched the telethon also. The money does go to a good cause. Leave Jerry alone. He is a good man that cares. The bible does say no good deed goes unpunished. I can see that is true!

  • Christopher

    I used to work for the Muscular Dystrophy Association, and I can tell you first hand that they do not do everything they say they are with the money. That’s not to say that they haven’t helped people, because they have, but a lot of the money raised goes back into fundraising activities and to pay their employees.

    I went in there with the same beliefs you do-that they are finding a cure for MD and helping people. Not quite. They have these programs called “Lock-Ups” which is basically having people phone drive for them. They say “Money raised will send an MDA child to summer camp!” Here’s the kicker-in 2009 when I worked there Summer Camp was cancelled due to H1N1 scares…so they were blatantly lying to people on the phone. It’s basically “Give us your money” and when they wouldn’t they would be harassed daily via telephone, and weekly via packets. It was a very hostile and rough organization to work for and probably the worst job I’ve ever had.

    One bad thing I used to always hate was how they would ask children suffering with this horrible disease to show up at their Lock-Up events and parade around so people would donate more.

    Support the people with this awful, neuromuscular disease and help them…for the MDA is not.

  • John

    Jerry Lewis is in his 80’s, he’ll be dead soon, thank god.I agree with Martin Lav. Jerry is a insensitive, egotistical and rude bloated old ego-maniac

  • RTS

    I think that the article is totally without merit, and written by a biter man. The fact of te matter is peole with MD are not normal, and there is nothing wrong with pointing out their limitations to encourage donations.

    Anyone that is disabled does not have to volunteer for MDA, nor watch the telethon.

  • Page

    You people are ALL a bunch of INGRATES! This man, the ONLY man who has spent his life getting money to HELP you and because he says WHATEVER he needs to in order to ge to peoples wallets you talk about him! He should let you rot in those chairs, but he never will!

  • The MDA no longer pays for equipment for those with disabilities. They no longer help those with MDA who have no transportation get to clinic. They do nothing except MDA camp for little kids and pay for Jerry’s travel expenses.

    Actually, there are PLENTY of other organizations doing far more for those with MD. Just look at FSMA (Families of SMA) who have funded millions in Stem Cell research, which is going to enter human trials as a promising treatment/cure. They do not ask for pity to raise money though. They actually support families with this type of MD. There are organizations for Duchenne and all the other forms, too.

    MDA has fallen way behind in helping find the “cure” they have been promising. The organization is a JOKE.

  • @RTS – The article was written by an able-bodied woman who has seen the crap MDA has put people through. Not a bitter man. Sorry!

  • Craig Drummand

    So, let me see if I understand you folks. Even if you remove the comments from Dominick (work with me on this one D), are none of the rest of you remotely interested in the accountability of organizations such as MDA? It’s been almost 50 years. 50 years. 1.3 billion dollars … +. How many of you can show where the stricken have all been taken care of? Where, exactly, is the state of research? What has been cured? Anything? How about an annual published report outlining and answering all these questions? In plain english. I mean, since the Assoc has never found it necessary to explain their activities (and no one knows what they are – specifically), at least lay them out there for all the folks to see – in writing. I’ve been hearing the “cure is just around the corner” spiel my whole 55 years of life. Is it unreasonable to expect honesty and integrity in reporting (or lack thereof)? I believe that Jerry is sincere about his contributions and efforts. Why? Because I choose to. Hoiwever, I don’t believe that that belief is immune from scrutiny merely becaue the cause is sincere. People can be corrupt (of soul or action) and corporations have no souls. So, just to keep things on the up-and-up … I think a full discloser of finances and activities would not be a bad thing. Then there would be no need for discourses such as these.

  • M

    Jerry Lewis abused his own children (who grew up seeking attention and drugs) and has the gall to offer to smack an addicted celebrity. Now makes creepy innuendo filled approaches to younger women. Funny all show and no substence narcissist he is, why is he still hosting a show involving children?

  • While I agree Jerry Lewis’ crass remarks on the telethon are a little over the top HE DOES NOT make a living on said crass remarks. Bill Maher on the other hand compared handicapped on the same level as dogs. Jerry Lewis is a 80+ year old catankerous comedian who has kept MDA in the face of the public. There is NO OTHER celebrity who has done this with a single organization for as many years period. Oprah bounces all over the map and gets corporate sponsership amidst scandels which she turns to profit for her empire. Jerry Lewis does not have a TV show, magazine, etc which he used MDA to keep his career alive. Remember Jerry Lewis was chairing the show when most other similarly aged young entertainers were sloshing their money around for self indulgance. Yes the opinions he may say of the handicapped are bristling BUT remember he is from another generation and ilk. To this day there are still many people who do not want to be around handicapped. Consider this – all his thoughts comments abruptness about handicapped hardships are similarly said or voiced on the talk shows for a single program garnering ratings. So if I add a doctor ..parade common people telling their thoughts and feelings and tack on a few advetisers it’s ok to say the SAME things Jerry says? Context differntiates the two and the person talking. I still think Jerry Lewis will be written in history as a ground breaker, both in his style of artistry, and his commitment to a charity.

  • Scott Thompson

    To the poster ‘bill cromwell’, sir, you clearly do not know anything about the Inuit tribes
    in Alaska. Reading a snipped out of a National Geographic does not an expert make you.
    And using this wrong headed logic, you are attempting to draw a (wrong) comparision
    of a native tribe tradition (myth) poorly understood by others (as you demonstrate) and
    compare it on par with how OUR society should treat it’s most vunerable members.

    Myself, I think it is far wiser and speaks far more highly of us as a nation to do everything we can
    to ensure that those who are differently abled, for whatever reason, have at a bare minimum the
    health care they need, a safe place to live, and some allowance for them to feed themselves and
    their families. If this comes through charity great; if it comes through a half cent sales tax on all
    items, that’s great too.

    Back to Mr.Lewis…

    I am deeply disappointed and disheartened by the borderline Bile being expressed towards Mr.Lewis.
    I must say I am not objective and also want to say that while I may not agree with some of you, you do indeed have your right to say it and I respect that. So please allow me mine.

    I feel so stupidly sentimental about Jerry Lewis that words can barely express for me
    how much of an idol of mine he’s been since I was a wee child. Every year, my mother allowed me to try to stay up and hang in there with my hero all those hours ( no, i never made it, sorry to say ) but I did always donate my allowance. A whopping $5.00. I never thought of those kids as being props or anything like that. Some were kids like me except I didn’t have MD. I was envious they got to meet him.
    I can only dream of meeting Mr.Lewis now. He’s been a massive influence in my life from the time I was a child to adulthood. He inspired me to condiser laughter as its own art form and I adore it.

    Obviously I do not know Mr.Lewis but I can say this with some confidence…from my childs eyes, i never saw him express anything but gentle playfulness with those kids on stage and his obvious warm and desire to tap or do kartwheels or however silly he had to behave to get people to call in is extraordinarily stressful.

    And Jerry, btw, never, ever complained about nor let interfere with his work the many, many very serious and life threatening health issues and physical problems and stresses and strains his personal life were enduring. He tried very hard to hide that from the publics view and to remain professional at all times and all things considered, and the hours he worked in ill health under stress…he’s human and has done something so good. Only fools would deny that. So can’t we give him a tiny bit, just a tiny bit of forgiveness, not that he needs it, and some small measure of understanding towards Jerry? To be less
    self-righteous contempt towards the man that founded and has been runing the flaghsip for so many decades, again, in spit of his own personal problems. But he never used them as an excuse to not go on with the show.

    And, as a cripple, I frankly don’t mind someone referring to me that way. It doesn’t make it true, like any other pooorly chosen words. I don’t believe for a minute that Jerry is trying to be nasty and vile and such.

    To those who wish to dissent you are of course free to do so.

    I will always adore Jerry for all he has given the world and to entertaining as Art; to his intelligent design in film making that benefited such greats as Scorsese; and calling in any and all favors he could, especially whe he first started the telethon, to get popular entertainers and acts on the show
    who people otherwise would have paid hundreds of dollars to go see those same acts. Jerry has super-extincts when it comes to reading an audience and when to do what.

    I’m not sure why some of us in this world seem to NEED to crucify the good guys. Is there no one else we’ll drag off to the whip, no matter all of the good they have done in their lives, to beat them for some new percieved transgression?

    Don’t you fools realize Jerry is not using his language, built on the bottom end of Newark NJ and growing up in clubs around playgirls and playboys and burleseque houses, to hurt you but rather he’s just using the language of ‘his time’?? I suppose next you’ll be suggesting he take modern linguist classes too eh? the man doesn’t have ENOUGH on his plate, he should start to have to squeeze ‘perfect’ in as well?

    Jerry Lewis has given and given and given his whole life. Couldn’t you grant him a little more compassion than you’re exhibiting here? Otherwise, you will be dangerously close to respresenting the very image you are trying to despise and so doggedly hound for his imperfections.

    Or, you could start your own charities. But that’s alot more work than mobbig up i dissatisfaction, isn’t it?

    I’m sure you’re all working very, very hard to be the great and generous people you expect Lewis to be.

    And I fully disagree that because Xamount of dollars has been raised, a disease should be ‘cured’. That’s not a scientific correlation at all. Don’t mention HIV as there still is no ‘cure’, only treatment and only for certain types. Also, there’s only a few states that directly help the residents of them while there is less help via the government. And MDA HAS funded research that otherwise would not have been done nor advanced as far as it has without the donations raised via the telethon.

    I also think you have COMPLETELY misunderstood much of what Mr.Lewis’ opinions have ACTUALLY meant versis how you are choosing to interpret them. I read the Parade article too and never felt he was belittling disabled people, he was only pointing out certain fundamental truths and ‘half a person’ is his way of saying that’s exactly how they’re viewed and IN COMPARISON TO a fully abled human body, there is a difference and that difference matters to the person experiencing it.

    Take it as Bad Old Jerry trying to put you down, but that doesn’t prove he thinks you’re inferior, it only proves you have an inferiority complex.

  • Patti Lekas

    I feel you are bitter about the topic, as a 58 year old Jerry’s Kid I thank the Lord every day for showing Jerry the way to bring to light diseases and families that would other wise be forgotten or unseen. Yes, people feel sorry for that little one in the chair and we cry at the list of those lost over the years, If we waited for Government funding to find all of these breakthroughs , most of us would be dead