Dude, at $20K a pop I need to get into the wheelchair business!!!

They are actually more expensive now. That was five years ago. Now they estimate the chair I'd need is around $25,000. That's an invacare Action Arrow with True Track, tilt n space, gel seat, elevating leg rests, a head rest, joystick, tray, and you know....the usual parts like batteries, thicker armrests, a seatbelt, etc.

When you sit in a chair and can't adjust yourself you have to be in something comfortable or...as happened to me with my last chair...you end up messed up physically and spend more time in bed than out of it.

You also have to be very careful because you can wind up with torn skin, pressure sores, chaffing, etc. It's a constant problem so they have to be high tech machines.

Even a relatively simple "push" chair like my wife's costs $4K. The air cushion for her to sit on was $400.

My wife has a spinal cord injury, so we don't have any dealings with MDA.

Life with severe disabilities is difficult enough. It's disturbing and sad to hear what's going on at MDA.

Clavos

It could be the limited demand, but that seems like alot of money. I know medical devices have a bit more rigorous standards but for comparison's sake you can get the world's most powerful motorcyle jam packed with fancy electronics, ergonomic and safety features, and awesome style and power that'll take you well north of 200 mph very quickly for around half that.

Why do medical necessities cost so much -- obviously far more than a comparable appliance that is not doctor-prescribed and insurance-paid? Could it be the helplessness of those who need them and the distractions of their "caregivers" who have much on their hands?

After the attack on my wife in Mexico that left her crippled we journeyed back to the States to see the traumatologist and get a prosthetic. A prosthetic leg from the supposedly best shop in Miami (Adam Finieston Clinic) cost nearly $15,000. They refused to follow the surgeon's instructions and it is useless. She waits for another expensive and debilitating journey to Miami to replace it.

In short, being made helpless does not put an end to shoddy workmanship, institutional dishonesty, nor fair pricing. If, as Ashtyn describes, the MDA and icon Jerry Lewis are failing in compassion and effectiveness; then what?

As Clavos said, "Life with disabilities is difficult enough." It is and the level with which we make life easier for the sick and disabled is the level of our compassion and competence as a society.

RedTard,

It IS a lot of money.

I think prices of medical devices are inflated because the cosumer is rarely who pays for them--it's usually Medicare or the individual's medical insurance (or both) paying.

There's a company advertising on TV in this market that's selling an electric wheelchair that says call them--they'll make sure you'll pay little or no money for their product. They phrase it more circumspectly, of course, but that's essentially what they say.

It's a lot of money and its all because of supply and demand.

People in wheelchairs -need- the equipment. Essentially, they are guaranteed a sale so why not charge an exorbient amount of money and make a hefty salary for it?

If the person cannot afford it then some other source will eventually pay and when they do they will pay a boat load.

My hoyer lift was some $5000. Bedside Commode was $500, wheeling shower chair, $1000. Wheelchair $20,000...the list goes on and on.

Of course, most of those are "standard". I got the "hydraulic" hoyer you pump by hand not the much easier to work but more expensive electric. Insurance doesn't like paying for extras but if you can afford it you pay through the nose for them.

Dominick

It really hurt to read this article. Jerry Lewis's Telethon was always set not too far from Yom Kippur to get the biggest bang out of the guilt that many Jews feel around this time of year. When watching his appeal as a small child and young teen on WNEW-TV Channel 5 in New York, I could sense this.

But that is not why this hurt to read. I do not know what Jerry Lewis's motives were when he started doing this over 50 years ago, but something has gone very wrong somewhere if the article I read is true, and I have no reason to assume it isn't.

I am personally very upset about this issue as i know Dominick and Ashtyn personally and have been friends with both for years i have no doubt that this is true as i have seen videos of Dominick on the show when he was younger i suppose what hurts the most is i used to donate money to this every year when i was a teen i would save a lil bit from each pay check from my job to send every year but i shall not be sending anymore i have helped take care of Dominick and i know what He goes thru everyday to live i shall be passing this blog along to many of the people i talk with knowing that they donate money to the MDA thanks Ashtyn for the info

This is a really good movie clip and I hope that you watch this. I was just like him... serving MDA... and I feel the same way.

Real People... Real Feelings... Real Emotions. thekidsareallright.org

I am pleased to tell you this article and parts two and three are being featured in the Culture Focus today, September 4th.

Diana Hartman
Culture Editor

I totally agree with this article. And actually, the maximum allotted amount for wheelchairs was quoted to us as being only $2,000. But we never got anything, of course. I don't raise money for MDA and never will.

Also, I'll never take my child to their clinics. Thank you for the warning! I suspected it, and that's why I didn't take my child there. But now I know they won't take care of my child as an individual.

Thank you for writing this article!

I see no argument here against the MDA. Maybe there are big problems that I'm not seeing from this story, but there's no complaint against Jerry Lewis here. You're taking resentment against the hardships and indignity of disease, and blaming the guys that are trying to help.

I was expecting you to come up with some malfeasance - telethon money being spent on ripple and hookers or something. But there's nothing like that here.

Your complaint seems to be that they're not spending enough money on your boyfriend, who's not as "profitable" as children. Use of that word is a particularly low blow.

Perhaps they don't have enough money to buy $25k wheelchairs for any and all. Is that reason to spite them for doing what they can?

You speak as if it was scandalous that their doctors let insurance pick up as much of the tab as possible. Why would that be bad? It would be irresponsible for them to waste their limited resources paying for something that insurance could be picking up.

A large part of the high wheelchair cost is likely due to product liability insurance. If a disabled person were able to contract product liability away, the price might be alot less and there might be alot more manufacturers producing them.

Regarding MDA, first, after 56 or so years of existence, you can bet the regular progression of bureaucracy has taken a toll. Second, and more fundamental, in 1950 the MDA formed.

In 1953, a scientist discovered MDA was truly a dystrophy disease. Look dystrophy up in the dictionary. Most of MDA is probably a biochemical genetic defect resulting from nutriotional deficiencies in the mother or a grandmother, when her eggs were forming before her birth. The defect affects nutritional ability in a debilitating way, which then leads to gross deficiencies, and then disease.

Why has MDA not done a massive amount of research in this area? There are Internet stories of individuals curing their children via supplementation with vitamins and minerals critical to muscle formation and maintenance.

Why do so many people leave their lives strictly up to their doctor, hearing only what their doctor says, and do what their doctor says, instead of think and research for themselves? It reminds me of a woman who called in on a radio show one time, crying about how she had to get a hysterectomy because the doctor said she did, and she called to ask, "Do I really have to?"

A large part of the high wheelchair cost is likely due to product liability insurance. If a disabled person were able to contract product liability away, the price might be alot less and there might be alot more manufacturers producing them.

Regarding MDA, first, after 56 or so years of existence, you can bet the regular progression of bureaucracy has taken a toll. Second, and more fundamental, in 1950 the MDA formed.

In 1953, a scientist discovered MDA was truly a dystrophy disease. Look dystrophy up in the dictionary. Most of MDA is probably a biochemical genetic defect resulting from nutriotional deficiencies in the mother or a grandmother, when her eggs were forming before her birth. The defect affects nutritional ability in a debilitating way, which then leads to gross deficiencies, and then disease.

Why has MDA not done a massive amount of research in this area? There are Internet stories of individuals curing their children via supplementation with vitamins and minerals critical to muscle formation and maintenance.

Why do so many people leave their lives strictly up to their doctor, hearing only what their doctor says, and do what their doctor says, instead of think and research for themselves? It reminds me of a woman who called in on a radio show one time, crying about how she had to get a hysterectomy because the doctor said she did, and she called to ask, "Do I really have to?"

I absolutely agree with Al Barger. Jerry Lewis is
a wonderful man who has done a great job for us all these years. If it wasn't for Jerry and MDA, myself and other Jerry's Kids wouldn't have nothing.

A lot of Jerry's Kids (Orphans) do have nothing. However, if you want to be pitied Denise that is your choice.

Most of us, don't want to be pitied, called crippled, called waterbeds, or be treated like we are stupid.

Like it or not, Jerry has said some very callous things towards the disabled, but if you can overlook that because he didn't say it to you then that is fine. I'm thinking of everyone else with MD and not just myself and they deserve better then Jerry.

Dominick

When I approached the MDA after first finding out about my son's Muscular Dystrophy. This was in 1993. I was sent a 3 year old pamphlet on the characteristics of some M.D.'s. I actually found the U.K. to be much more progressed in the matters of ...respite care, medical research, and availability of clinics. Childrens medical equipment is much easier to secure, although it took 6 months to get a wheelchair. Six months to a terminally ill child is a long time. I have since felt that Jerry Lewis and MDA exploit M.D.'s youngest victims, while securing large amounts of cash for Dr.'s. My son never saw 50 cents. The camps are costly. The clinic was just as described earlier. No warmth like the telethon portrays. No support groups as if you could really get to one when you are caring for a disabled child. With tools like the internet..it just seems that the MDA could do so much more for individuals than lining a few pockets.

I was wondering where all this misinformation is being gathered from? I read alot of people's comments talking about how the mda doesn't help people, but I would like to see some proof of this fraudulent accounting. I have sent kids to the summer camp and know they dont pay a dime for this. The kids that go have a wonderful time and truley are greatful for this one week. I have spoken to countless families with MD and they are very appreicative of the help being recieved by the MDA.

All I am saying is if you are going to try and slam a good organization, you best have solid evidence to back up your claims. Also, one guy's opinion who feels he was disowned by the MDA a long time ago does not count as reputable research.

I have statements from insurance showing they paid and not MDA. I can also get statements from the guy who does the equipment not only for me but for MDA. He's worked tirelessly on getting my chair and he was quite frustrated with MDA only paying a certain amount.

I have letters from MDA showing their refusal to pay and also would put myself in court if I had to to prove the woman broke the law by giving my mother my medical information when I had specifically asked MDA not to.

The only thing MDA ever did was send me to Camp...but now I'm 25. I can't go to Camp and even if I could...without a wheelchair what good is Camp??

Dominick

the MDA was not set up to help patients but to keep patients from finding out what md is. ALL MD'S including als are demylinating disorders as is aging and that which occurs in diseases like aids (wasting) and cancer (cachexia). Aids muscle wasting is treated. The drug is SEROSTIM and it is strictly controlled by the FDA. These diseases are the MOST studied of all genetic diseases and are studied under the medical terminology hypopitartism and adrenal insufficiency. The reason they will start treating patients soon is that there are 78 milllion boomers that the government can't afford to put in nursing homes. the name for muscle wasting in the elderly is sarcopenia-a made up name by the NIH.

I must admit, I was shocked to read this essay. There are some issues with MDA that I don't necessarily agree with, but this article was founded on the basis of one person's experience and a website. Literarily, it is good that this is an opinion article, because the research is lacking.
To comments, the fact is, how can you say that camp was costly? In my years of association, I have never seen my family or anyone else's pay a dime to attend summer camp. I have never liked MDA's use of children as their poster people, but I understood that is what raises the money. I have done research on where the money has gone. When MDA was founded there was relatively little known about muscles at all. The majority of what you read in a text book was found by doctor's funded by MDA. Recent readings are pointing to a cure in as near as 14 years. Golly gee, according to you, what a waste of money! I would much rather them pay for some of these wheelchairs with all the bells and whistles possible.
I know firsthand that MDA charges insurances to save the money for those that don't have it for clinic visits. If your family needs it, MDA will pick up the bill. Trust me, I know. It does make me sad that clinics aren't all the same, because one we attend has the most attentive staff, that talk to us. They know us, and care about us.
All I am saying is that MDA really is a good organization, with good people working there, who are trying to do what they can for those of us affected by these diseases. There are many things that I think could be done better, but I know that MDA is trying.

I have no idea what it is like to have a disability. I admire those who stoically wake up every day and face their situation head on. The expenses from so many of these entries are staggering. I vaguely remember after, I believe it was Hurricane Andrew (?) that MDA lost so much money, they had to cut back on a lot of their services. I am not sure if that is textbook, but I wonder if that is why you remember MDA providing things when you were little that they no longer provide.
I have known a lot people helped by MDA, and all of them have always had wonderful things to say about the organization.

I have MD and at the age of 28 I do not like to go to MD clinic. It seems as if I am suppose to live a certain life, a life filled with limits, but that is not my case. I work, drive, etc and have never been able to walk. If I listened to the doctors advice I would not be living the life I am today.

Here is your proof that MDA does not do or benefit any child with Muscular Dystrophy.My son was introduced to MDA six years ago,since then he has only had one appointment annually,which was only an appearance assessment,not other medical care that MDA claims to provide, in this book they send you,making you think,wow this is great,I found help.The cases were then turned over to a non qualified,though sponsored through MDA,only available ortheapedic.MDA refused to write a prescription for my son to get physical therapy.Lied to my face telling me that MDA and medicaid did not cover any braces.I paid 735.oo for one pair of night splints and 485.00 for just one blood test.Then I find one year later after my own research that medicaid did in fact cover braces and devices the whole entire time,they maliciously made my son go without, For what.They tried to stick him on steroids, but do you know that steroids are used for inflammation.Fact: There is no inflammation involved in muscular Dystrophy.Look it up. Steroids are given to parents only to make you think you are doing something for your child, they claim some have walked longer,steroids actually make bones brittle and can cause type two diabetes.That is only an insurance title used,so they can be warranted to continue to legally adminster them.They have no proof that it helps or hurts,same as with exercise.If steroid usage is so prevailing why is Mr.Lewis himself written in a national magazine as desperately trying to break his own steroid habit with cystic fibrosis,yet still condoning it for children.MDA denied me a presciption for a wheelchair.They lied again to me saying my son had scoliosis and needed lukay rods inserted,myself being a medical provider and in radiology at the time,ex-rayed him myself:No scoliosis.They wanted the insurance money,not caring whether my child trully needed it or not.After this I even went so far to offer my own resume and volunteer to help in any way that my nonprofit and medical experience could solve these problems through MDA.They did not want my help.I watch telethon after telethon,my son gets nothing.Then I get a call from MDA,I think they want to recify what my son had gone through,instead,they want to shut me up by offering me to host the telethon and answer three questions,I was so offended by the questions I immediately called MDA telling them number one question:talk about my son,I told them I don't want publicity, I want adequate care for my son.Number two:How has MDA helped my family.They haven't and I explained every bit of my past experiences with them again.Number three:Why should viewers donate.They shouldn't and that I would not get up and fabricate or glorifly anything for the sake of MDA.I wrote letter after letter to MDA asking for some kind of logical response,nothing.I went to legal angencies, wrote the congressman, the insurance examiner, who told me there was nothing they could do it was only a severe grievance that I had against MDA and though they were negligent that unfortunately it is only limited to injury or death not, someone who is non ambulatory.So they can away with anything they want and turn around and say well, it was age appropriate anyway because of the illness.I told MDA to stop sending me propaganda be a star, it doesn't take me giving them 5,000 dollars for my child to be as they claim a star.My child is already someone in his own right,not to be exploited and used to make people feel sorry for and donate that none of these children will ever see.I removed my son from anything to do with MDA and turned to Shriner's who did more for my child in two visits then MDA did in his whole entire life. MDA then lied about the reasons why I removed my son from their care,or rather lack of it.They refused to give me a copy of my son's chart.I wrote MDA five more letters called twelve times.Threatened to go to the news.I went to check out the camp, they refused to let me look around.Bike week raised fifty thousand dollars, where is it? Winn Dixie, I can't even shop there anymore, aisles of smiles, bunch of bologna. I proved to Channel 9 news that I had proof and can refute four out of the five places MDA claims their money goes towards.They said they would contact me in a week, because they said, if your child and these children aren't getting the money, Who is?It has been two months and I haven't heard from them, come on people this Jerry Lewis, not the mob, everyone is so afraid to face the MDA or being sued.I again contacted channel 9 ivestigator,telling him not only am I fighting for my son but many others who are counting on me to get MDA to be held accountable for their actions and have everyone know the truth of MDA, or at least come through with something now.I asked for them to try to do something for my neighbor's child who died two weeks ago,who had Muscular Dystrophy and MDA had never helped him either.How many more children have to die while MDA ceo's sit there living it up off the proceeds of the children with MD, never see. I will continue go to every news channel until someone airs the story, so no more people donate thinking that their hard earned dollars goes to these children. I also came to found out that MDA selectively chooses their spokechild and only one based on a wealthy level of income and who have donated over 20,000 dollars already.Most people I talk to I ask what do you think that money goes towards they say, to you and your child, healthcare,handicapped transportation, funeral expenses.Ask MDA where the money went,Oh, okay.They will avoid you at all lengths. I only know people to do this, that having something to hide.

Wait,I forgot finally MDA has come up with an answer. Research.I researched and tried to figure out why MDA doesn't really help my child and others with MD,I found no answer. I researched steroids and proved the negative effects over the alleged benefits.They still prescribe steroids anyway.I proved MDA negligent.What has any of this research changed.NADA.Why put all your eggs in one basket.Is there a cure? No.Is one going to be found? Maybe one day, maybe never.They say advances are being made,but in the last several years the same prognosis gentemyocin has showed more promising,so why hadn't they furthered that research. Myostatin inhabition, transfers,you hear of all this but what has it changed nothing.Except the population of lab rats.I have theories,have they asked,no,you have theories,have they took anything in account,other than everyone's money? Realistically they don't know any more about this disease than the rest of us five years ago.Maybe in the meantime,if they were to actually take one day to come and visit these children(as human beings,not items of research,with little money signs attached to their heads)in their environments to compare and see what children are doing better than others and why? Why don't we put our emphasis on the life of disabled people right now,their immediate needs.Has MDA ever called anyone at anytime to ask what that exactly is? No.That, in the end is what improves the overall quality of a person's life.IF there is no cure in sight at least give them something,to have, other than a pipe dream.Get your head out of the clouds MDA and get real about helping these children.Most cures that have come about weren't from millions in dollars of research, most were stumbled upon accidentally by somenobody.Moreover someone who has the disease themselves.

I have two children with Muscular Dystrophy (Duchenne). MDA clinics are different across the country. Sometimes you need to find the correct one. Within 1/2 hour from my home is a clinic which I found worthless untill I learned that I needed more than just the neurologist who was the one who saw my son in clinic. I also needed a pulmonologist, orthopedist, rehab and physical therapist. Once I found those people in my area those are the people I used. Before I figured that out I was driving 4 hours to a clinic who had all those people in the clinic. Why are all the clinics different, probably because of what the hospital that hosts the clinic is willing to put together, sounds crude...but that's the truth....all hospitals in this country offer you different types of care..that's a fact whether you are disabled or not. MDA does not give you money directly..they need to be billed. It is up to the company/medical provider who is providing you that service to bill MDA directly. Both my boys received new wheelchairs this year and the company who fitted them billed MDA for the $2,000 for each chair. Shame on those who don't do their research.....you need to know what will be covered by your health insuracne company whether it is private or Medicade. Different doctors do different things. Not all health insurance was created equal. MDA itself does not write scripts. They are written by the correct doctors for the care you are seeking. A good rehab doctor can write the script for a wheelchair...you need the right person to do that. I found the people who work for companies who supply them are the best in helping your primary care doctor write the script. If you have medicade you have a social worker to keep you certified with medicade and they usually know a good physical therapist to write the medical necessity letter etc. etc. I think people are expecting the MDA to be able to take care of all your needs..MDA raises a lot of money...this money goes mainly for research... and they tell you that. Are you aware of how many doctors are out there looking for the answers? Three years before my son was born the research had finally identified the defective gene that causes the disease, without that how can a cure even be found...in the last 17 years they have been able to lengthen the life of my children. My oldest is 17 and when he was diagnosed I was told he would live into his late teens. Now I am being told he and my other son may live into their 20's. This is because of research ...many of these new types of treatments are not coming directly from the MDA clinic. They are the pulmonogist, cardiogist, etc. that are treating these children on a daily basis. As for MDA camp...again.. many of these are camps for the disabled who open them up for one week in the summer just to host MDA kids..many are not set up to take Adults... My sons have been attending camp for many years (11 and 4 years). I have never paid for camp. My insurance has also never paid for an MDA clinic appointment. If you receive a bill from your insurance company or a statement that they paid...that should be forwarded to your local office to be taken care of. Predisone is not only used to treat inflammation ... do they really know how it helps all these kids, no, but it does help their immune system and with my kids it has kept colds at bay and I have seen the results in many of the kids who take it. Again, it is a personal choice if you choose to use this type of medication as a treatment. Just like many other medications for other diseases, it has side effects. Just like any other disease and a doctor gives you options for treatment, you have to decide what is right for you. MDA was set up to raise money to find a cure. There are other organizations out there (MDA Family Foundation) who do not search for a cure and try to help families. Do I wish that the MDA would just take care of all my sons needs, you bet.. but if they took that on who would be funding the research for a cure, mind you for years without help from our government. And if they took that role... is there enough money to help all the children with all their needs? Seek out the doctors who are treating these kids. No one knows why Jerry Lewis took this on to find a cure... but maybe someone should take on the roll of raising enough money to provide all the services to all the children/adults affected by a neuromuscular disease.... you'll need a whole lot more than he raises!!!!!!

Wow! After all the research I've done on MDA, it seems to me that many care more about medical care. Duh MDA cannot do everything, but they are geared towards helping kids . They cannot help everyone. Instead of focusing on this, focus on who they do help!

THe person before me is right, seems like a lot of people are pessimistic and unjustfully bitter.

Go MDA GUY, Caren, and Bob!!!!! You are sooooo totally right!!

oh yeah, MDA RULES!!!!!!!!!!!!!

Pretty sad that some out there have to complain about everything. Would you rather have MDA abolished? If you're unhappy, ask Bill Gates if he'd like to cover the deficit to help EVERYONE...jeez!

No one is asking MDA to do evertything, because I myself have been the first one to offer a positive solution and take the initiative to call local people, to see if they are satisfied with the care they receive, go to their homes, listen to their needs, help in any way I can, tell them the places and things that are beneficial, going to the funerals and giving what I can to hear the frustration of the same thing:I wish MDA would have provided the same care, not just medical, as children in other states receive. I realize that MDA cannot be everywhere at once, but when you have been made aware of a problem in a certain state by numerous parents of MD patients, that you place an MDA emblem on it becomes your responsibiliy to make sure it is up to par and reflecting what you stand behind. Not to say oh well, people in Pennsylvania aren't complaining or it doesn't affect me.So let's not worry about it. These are children's lives in the balance.It's easy to type a few lines on your computer and judge others and be defensive because you work there and you like jerry lewis on tv and pat everyone on the back.But if your child was going through the same thing would you just accept it? I at least have done something. Have you? I know where and what my money is going to. Do you really know for a fact if your money is going to what MDA claims and if it is in fact helping the children besides research? Then that is what they should only claim and say we are no longer providing the four other services we list any longer.Make their specific money given and itemized statements open to the public. If you know 100 percent of children getting help through MDA please give me the name and number of the person so others in my state can do the same.It is true that jerry lewis was the only one aimed at fighting Muscular Dystrophy and that is to be commended.Every great plan has flaws,we all do, but to be able to admit when inadequacies occur and do something to change the situation to improve it is important.But to become desensitized and neglect the way an organization once ran, because you refuse to be open about the things that need to be addressed or listen to the people you are representing that have founded grievances,is wrong and bad business practices on any level.What does that say for a company? Research is important, but shouldn't stagnate and then be released at different intervals as a new discovery when in fact it is apart of the same repeadative collective study for years that can't go beyond the animal testing stage. With the decoding of DNA there have been breakthroughs and the gene which is on the 27th exon.But not significant enough for the money spent or that anyone with a limited medical license couldn't tell you themselves.It is coming from different sources of research and MDA adapts and discloses it as it's own if it pertains to Muscular Dystrophy. Prednisone has helped with colds and lung development, but I was only speaking of the long term use for atrophy. I'm not saying they should spend all their money on personal needs, but out of the millions they gather,set aside something at least. Even if it was a one time death benefit of hardly nothing, people would at least know they took two minutes to care to acknowledge the lives of the child who had muscular dystrophy,that they weren't only a number that suffered from research not advancing. I'm not rich in any means and I was able to help without donating hundreds of dollars.I'm not asking or expecting anything other than what I would give myself.If I could raise enough money I certaintly would and I would make sure every child was given the same chance.Not by abolishing MDA,never but redifining and re-constructing the way it is ran.There would never be a way to please everyone, but I would at least make an effort to respond or apologize,try to fix the problems that arise,than to do nothing.

I am a neurologist and director of an MDA clinic. I have read this site with interest. Although there is a certain amount of misinformation presented, all opinions should be heard and appreciated. I can assure you that the the physicians and scientists I know who are funded by the MDA are extremely passionate about their work, attempting to provide good care and future treatments. I would encourage those who are not happy with their care to call the MDA for suggestions on a different clinic or approach to treatment. I would also encourage those who are unhappy with how the MDA divides it's dollars to contact them. This may benefit the individual, if there are misperceptions, and the organization, so that they can partner effectively with patients and patient advocates.

Each MDA office runs differently, as a former employee of MDA I can say that my local office was corrupt. Don't misunderstand, however, because the majority of the MDA offices around the country are great, do great things and have passionate people. As the saying goes, a fish rots from the head down.
As far as Jerry goes, he has never said why he decided to get involved, but he is a true volunteer so even if you don't like the delivery of the message you have to at least give him credit for the heart that he has put into the telethon and MDA over the years.
Also, on the topic of the telethon,most people assume that the money shown during the telethon is actually raised live on the air. In actuality the funds are raised from telethon to telethon and the money raised during the year is announced on the air anually. A majority of the pledges that are called in during the telethon (as real as they are) do not actually get paid... seems like there are two wrong parties here. First, MDA for attempting to convince their audience that millions of dollars are being raised in 24 hours (not that it is really believeable) and second, the caller who pledges to send a donation but fails to follow-through with their commitment, providing only false hope.
I stated earlier that my local office was corrupt, that is because the director does not care about the cause... the title gives her a good image in her community and that is all that she cares about. It is extremely unfortunate, that one indivudal can ruin the image of an organization that does good (despite opinions and common misconceptions). However, I do know several directors who are passionate about their job and care about the cause... that tends to get overlooked by the vast majority.
Overall, I believe that MDA does a lot of good. I have met with hundreds of patients and their families during my time as an employee with MDA and as a volunteer. I also had a brother with Duchenne's so I see things from all angles.
To see the faces of the children who get to go to camp and be "normal" for a week is truly amazing. Someone mentioned earlier that MDA does not pay for camp, that is not true... whereas some regions may be able to get camp space donated, most have to pay per child, not to mention supplies such as fans (since most camps do not have A/C), food for special diets, games and items for various activities for the week (the final cost typically ranges from $400 per child and up ... it may have increased over the years). They also have to pay for background checks on all of their volunteers for the safety of the children (they do not ask the volunteers to pay for these checks because they are already donating enough).
Since each office is run differently, one cannot intelligently make a blanket statement that MDA does not do any good... from my experience, even with an uncaring, uncompassionate, and selfish indivual as a leader the staff level still cares and are passionate about their roles and continue to provide excellent service for the patients and their families.
Nothing is free, when MDA holds a support group they typically have to pay for space, and in some areas they may pay to have a van pickup patients that would otherwise be unable to attend the group. Some areas even have to pay the facilitator of the group (some will donate their time). Not to mention the money that they put into research, it is apalling that someone would assume that anyone would receive funds for research the whole time knowing the cure... besides, most of the reseachers are not employed by MDA and are conducting studies for other diseases simultaneously since there are quite a few connections with other diseases.If they were sitting on the cure for MD, they would most likely be sitting on several other cures as well (but I suppose dyou haev a conspiracy theory for that too)
My goal was to shed some truth, and dispell some of the myths that I read above before they are spread too far. Don't stop giving, if you truly believe that they are not spening the money properly then specify where you want your donation to go (i.e. camp, clinics, flu shots etc.). The undisputable fact is that there are a lot of children and adults that need support, and there will be for a long time... don't neglect them because of these myths...

I don't have it but i am doing a report on it. It seems hard to live with.

I have gone through the majority of the comments and most of them are negative. Though I do believe that MDA does SOME good, they are a corrupt organization. Former Directors, like myself, we were made to lie to people who participated in the "lock ups." Lying by telling them that they are being called up for having a "good heart." While there are some referrals from people, they are few. The fact is that telemarketers get a list that MDA provides by zip code. They then go through the list to recruit...when people asked how their name was given, that's when the lie comes in. Sometimes people beg for the person's name, but we are trained to come up with every different type of answer - because there isn't a name to give them! It's a joke. The telethon is a joke as well...There are NO funds that come to the local office. All money pledged goes to the national office. District directors are also made to sign an F-7 report that lists how their time is spent in the last three months...when the majority of it is spent on fundraising, the report comes back to you that you have to sign - it's been changed to show that the majority of time was spent on public health and information...that's to show on their annual report that time isn't spent fundraising but on education. It's a total fraud. Not to mention how they treat their employees. I referred to it as working for the Giszhtapo...One of the worst organizations I have ever worked for. I will never donate money to them. These are just a couple examples of their corruption.

I have FSHMD and was diagnosed when I was 12 (I am now 25). I was a very healthy kid, hopping fences, playing sports, anything you could picture a rambunctious youth with a lot of energy doing. At 14 I was in a weight lifting class in junior high and was noticing my strength get better in many parts of my body, but was prevented to continue at the request of fascist mda doctors who coerced the gym teachers. Plus my mommy wanted gimp money from the state for having a freak child, she is a selfish bitch, but that's another story. These doctors lie. They will tell you there is no hope, no natural alternatives, they will say physical therapy such as yoga or weight lifting is ineffective and weakens you quicker. If you are young and have parents who think they know everything, even against the will of that child, and all the sudden you come home from school one day and your mother says to you "why are you postured like that?". perfect for them. perfect in the sense that a child who has parents who don't try to teach that child to love ones self and makes that child feel like a freak, crushing an already vulnerable self esteem. They want us on pills, in wheelchairs and on operating tables. I'm a naturalist and still walking. Western medicine is corrupt. surgery does not heal disease. love yourself, ask questions get answers and share knowledge. there is an herb for everything. look into traditional chinese medicine. nutritional therapy. light physical regimens to start such as yoga or tai chi. the day you quit trying and just go with their bureaucratic, profit-driven bullshit, they will win and you will be one of their guinea pigs. Jerry Lewis, burn in hell. And all of you butcher surgeons will reap what you sow. By the way, all the Shriners are also high ranking freemasons.

What confuses me is where the sense of entitlement is coming from? MDA did not cause this disease. MDA is not a government agency. MDA does not require any fees from its families. MDA does not owe anyone anything EXCEPT its public obligation to account for how it spends its money. There isn't even a responsibility for HOW it spends the money, just that it does report how it is done.

So why are people mad that MDA limits what it spends per person with a form of MD? Because they are in the extremely unfortunate situation that they are faced with social stigma, unfair laws, unfair health care systems and the reality that they are facing disease. It is too easy to blame MDA for not providing enough because they are in the public eye through the Telethon, but the real problem isn't MDA. The real problem isn't the families facing these diseases. The real problem is that far more needs to be done to fight these diseases.

Does anyone believe that there is an organization that has it right? Cancer has been around just as long as MD. No cure there either. And there are over 100 cancer charities each covering different forms of the disease and providing different services. Diabetes? Parkinsons? No.

The worst part about the posts that I read is the misinformation and unwillingness to really get down to the truth. The strong emotions don't allow for it. Its a shame. If MDA doesn't give you what you need, do some research and find who does. If you don't like your doctor, find a new one. If you don't like your local MDA office, call their national office, the BBB or the police and report thier "corrupt" actions.

Stop whining. Get moving. Be responsible for your own situation and make it better. All the rest is just a pity party, the exact thing that the Orphan's claim is wrong with the Telethon.