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.
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?
Dominick
28 -
Jude
Sep 06, 2006 at 12:24 pm
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.
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.
Dominick
31 -
MDA Guy
Sep 07, 2006 at 7:11 pm
Revenue and Expenses: Fiscal Year Ending March 31, 2005
Revenue
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
Expenses:
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
32 -
Martin Lav
Sep 07, 2006 at 7:18 pm
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.
33 -
MDA Guy
Sep 07, 2006 at 7:32 pm
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.
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?
Dominick
35 -
Nancy
Sep 08, 2006 at 2:08 pm
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!
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!
37 -
MDA Guy
Sep 08, 2006 at 6:45 pm
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%.
38 -
MDA Guy
Sep 08, 2006 at 6:49 pm
Ashtyn,
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....
39 -
MDA Guy
Sep 08, 2006 at 7:00 pm
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...
Dominick
41 -
MDA Guy
Sep 09, 2006 at 2:10 am
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.
42 -
MDA Guy
Sep 09, 2006 at 2:30 am
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.
Dominick
44 -
MDA Guy
Sep 09, 2006 at 6:55 pm
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.
45 -
Steven
Sep 10, 2006 at 12:45 am
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.
46 -
Ellen
Sep 10, 2006 at 1:05 am
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.
47 -
Ruvy in Jerusalem
Sep 10, 2006 at 3:12 am
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.
49 -
MDA Guy
Sep 11, 2006 at 1:24 pm
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.
"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.
Ashtyn
52 -
MDA Guy
Sep 11, 2006 at 3:57 pm
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.
Dominick
54 -
truthdoctor
Sep 03, 2007 at 1:25 am
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.
55 -
Al Wilson
Sep 03, 2007 at 6:34 pm
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.
56 -
Dr Dreadful
Sep 03, 2007 at 8:37 pm
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.
57 -
prushotaman
Feb 20, 2008 at 7:33 am
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
58 -
Kimberly Ann Hill
Mar 24, 2008 at 3:18 pm
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!
Article comments
26 - 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.
27 - Dominick Evans
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?
Dominick
28 - 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.
29 - Andy Marsh
Wow! Thanks Jude...that's pretty much an eye opener for me...I had different ideas about where all that telethon money went.
30 - Dominick Evans
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.
Dominick
31 - MDA Guy
Revenue and Expenses: Fiscal Year Ending March 31, 2005
Revenue
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
Expenses:
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
32 - 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.
33 - 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.
34 - Dominick Evans
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?
Dominick
35 - 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!
36 - Ashtyn Evans
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!
37 - 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%.
38 - MDA Guy
Ashtyn,
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....
39 - 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!
40 - Dominick Evans
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...
Dominick
41 - 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.
42 - 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.
43 - Dominick Evans
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.
Dominick
44 - 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.
45 - 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.
46 - 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.
47 - 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.
48 - Dominick Evans
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.
49 - 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...
50 - Dominick Evans
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.
Dominick
51 - Ashtyn 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.
Ashtyn
52 - MDA Guy
haha....so you are liberal lunatic, its all starting to make sense....
53 - Dominick Evans
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.
Dominick
54 - 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.
55 - 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.
56 - 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.
57 - 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
58 - 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!