Jerry Lewis must DIE!

Not every parent of a child with MD is grateful to Jerry Lewis - and the whole attitude that they should be grateful is part of the problem. Another is the way the kids are paraded like they’re in a sideshow. Feel sorry for these poor sick kids! And all this talk about “finding the cure for MD”. That’s like saying “finding the cure for cancer”. MD is a diverse group of diseases, and even assuming they’re all curable, it’s highly unlikely that one treatment will prove to be The Cure for all of them.

Flodjunior has what is probably benign congenital hypotonia, which is in the muscular dystrophy spectrum. But it’s not fatal, it’s not crippling, it’s nothing like the Jerry Lewis Vision Of MD. Of course, no one has ever heard about it, either :rolleyes:

Oh yeah. As if I made my first million working one weekend a year. Most of the folks working (myself included) do not get paid in anything other than a heartfelt “thanks, we love you for it, please come back next year.” And we do. Most people who do work for pretty much all of the charitable organizations get paid in the same manner.

Perhaps the MD sufferers on this board haven’t read this thread. Perhaps they have, and don’t feel like responding. Perhaps they, like you, think Jerry Lewis is a fraud. Whatever their reasons, it’s fine by me. I never said I liked Jerry Lewis, either. I just said he believes in what he’s doing.

Wow, I saw Jerry on the tube today and he looked like he was about to keel over. He looked bloated and his right eye apppeared to be clouded over and twitching. He never did stand up or move from behind his desk.

Yah, I truned it on for a minute and thought he had really gained the weight.
I used to watch it years ago, when he got burned ot at the end of it.
Did they even have anyone remotely famous on this year?

<apropos of nothing>
Just for the record, the French think Jerry Lewis is a Telethon genius.
</apropos of nothing>

Have you ever even been to MDA’s web page? Do you even know what all they do? They run free clinics for MD suffers. They pay for my ankle-foot orthotics. They paid for my genetic testing. I’m going back to the clinic in three weeks to find out how to utilize the other services they offer, including physical and occupational therapy. They also publish a magazine for MD sufferers which offers the latest research news and advice for daily living, they offer support groups, and they run summer camps and fishing derbies for children. MDA isn’t about just finding a cure, but making life a little more livable.

As for Jerry Lewis himself, last February he spoke before congress to increase NIH funding for MD research from $19.9 million to $100 million.

http://www.mdausa.org//publications/Quest/q82senate.cfm

But look at those numbers. Last year, government funding was $19.9 million. The telethon earned $54.6 million. Oh, no, I’m sure telethon dollars haven’t helped a damn bit!

Chas.E.:

MD is cured! We don’t need any more charities! I don’t think so. What is “gene therapy”? And for which genes? They haven’t even identified all of the different genes that cause each individual variety of MD. You do realize that there isn’t just one disease called muscular dystrophy, don’t you? Yes, I’ve heard rumors of new discoveries and breakthroughs, especially in the area of Duchenne’s MD, but so far as I know boys afflicted with Duchenne’s are still dying before their 21 birthdays, so it’s not a done deal yet.

(Side note, a while back I posted a GQ about gene therapy. The answer I was received was, maybe someday for infants or fetuses, but for a full grown adult? Not likely.)

flodnak:

My sister attended the MDA summer camp for 7 or 8 years, and most of the kids picked to be local poster children seemed to consider it an honor. It’s their 15 minutes of fame, their moment in the spotlight. The whole “pity” aspect probably doesn’t occur to them. Hell, it didn’t even occur to me until just now when I found out how many people are indignant on my behalf.

Geez, I’ve never liked watching the telethon just because it’s long, boring, it preempted my cartoons, and my sister sobbed all through it because half the film clips they show of happy frolicking summer campers are people she knows, and half of those have died since the film was taken.

So, as an FSHMD sufferer, here is my final tote board:

MDA: useful
Jerry Lewis: schmuck who serves a purpose
telethon: boring, but also serves a purpose
pity: yes, please :stuck_out_tongue:
Chas.E.: grade A schmuck who serves no purpose

Before anyone accuses me of hypocrisy or dishonesty about my real feelings towards MDA, here is a excerpt from my FSH page:

All I can say is I have a negative attitude and when I wrote that page I was feeling particularly low (Reader’s Digest won’t ever be doing an inspirational story about me). See my previous post, I am aware of some of the things MDA pays for and part of the point of my upcoming visit is to find out what else they can do. Their scope is frustratingly limited in some areas, but I don’t harbor the ill will towards them that Chas.E., who has never even had to deal with them!, seems to feel. Good grief, man, don’t judge the organization or their spokesman until you’ve had to walk in the mocassins of a person who actually depends on them! What can you possibly know about what they do and don’t do??

On a side note, I recently read that MDA will pay for one physical therapy visit a year to teach the patient and their family how to perform physical therapy themselves. So there, no pity therapy from them, they EXPECT disabled people to take care of themselves. Happy? :stuck_out_tongue:

(And I do think I’ll modify my page a bit-it’s quite a downer, isn’t it? It makes being disabled sound downright unpleasant.)