Last night Jerry Lewis got an award for his work for muscular dystrophy (MDA). I wish he had spent few minutes talking about what MD is and why everyone needs to get involved. Missed opportunity and the audiance did not even stand up for such an outstanding humanitarian work. I blame the presenter for not talking about the significance of MDA.

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I didn't get to watch the oscars.
"I'm telling people about a child in trouble! If it's pity, we'll get some money. I'm just giving you facts!"

"Pity? [If] you don't want to be pitied because you're a cripple in a wheelchair, stay in ya house!"

Jerry Lewis, CBS News Sunday Morning, May 20, 2001
oh - I also forgot about 1991, where he referred to people in wheelchairs as "half-persons".
Even though I support MDA, I still have many areas that I will voice my opinion and say why has Muscular Dystrophy been a hush hush illness! Many other diseases such as cancer, diabetes, etc. everyone has heard about.
So, many boys have DMD or other forms of MD live amongst other families, yet so, many don't know about MD! Everyone here calls it MS even after I openly talk to them about what Adam has, if I am going to open my heart up and tell you about MD, please do me the favor of remembering what I just educated you about it is MD not MS ( I have told people this ).

I am not here to belittle cancer or any other life threatening disease, but when someone hears that a person has cancer they empathize with them and support them, their support system is grand, there are always fundraisers going on that many support and know that these fundraisers are happening in their communities and these aren't organized solely by cancer individuals and their families like we MD families are doing all the time living the Duchenne Journey and plus going that extra mile to raise the funds by ourselves for our boys! When we have MDA walks there are maybe less than 50 walkers, when there are cancer walks there are 1,000 of walkers, when there are March of Dimes walks there are 1,000 of walkers. What I am saying is that not one terminal illness should be more important than any other terminal illness, they all need to be looked at on the same playing field. Ponder about this for a minute.....there are many survivors of cancer and yet today in 2009 there are still no survivors of DMD, BMD of ALS! We feel the same feelings as cancer families, the sadness, the hurt, the roller coaster of emotions, the empty hole in our hearts, we all want the same for our love ones no matter what their terminal illness is named! Not one terminal illness should take preference over another form....they all do the same thing rob families of their love ones! I can quarantee if someone that works with cancer research, etc, instead of MD had received that award there would have been a standing ovation, we do need to stand up to MDA and tell them changes need to be made re: awareness of MD and educate the world about our Journey as it is just as important as the other Journeys other families are on!
Wow, Cheryl! I whole-heartedly agree. My husband and I were just talking about this last night. It is so unfair!
Wow, Cheryl! Everything I've ever thought but never said! Since my son's diagnosis our local MDA office has been nothing but good to me. They have gone the extra mile every time needed. I don't know about National MDA but I am very proud of the staff in our local office!
That is what I have been saying since my son was dignosed. I was thinking about finding out what can be done about getting license plates for the MD here in florida. And starting some other fundraiser. Because before he was dignosed I had no idea what DMD was. When the doctor said he might have I went home and researched it for hours on the computer.
Our Local Maine MDA Office is also employed with very hard working dedicated individuals that are awesome!
Kulwant Pannu said:
Wow, Cheryl! Everything I've ever thought but never said! Since my son's diagnosis our local MDA office has been nothing but good to me. They have gone the extra mile every time needed. I don't know about National MDA but I am very proud of the staff in our local office!
Let's all write or e-mail the Oscars Production and the presenter ( not sure who it was ) and also to Jerry Lewis and share our thoughts and concerns!

I am game if you are,
Cheryl

Don't forget about MDA going GREEN! and purchase your Shamrock today at participating businesses in your communities....and check out on my page about "Scents for Duchenne" Feb. selection and why it was chosen...ordering deadline is this Saturday 2/28/09!
I hate to say it, but the only time I ever hear from the MDA is when I get the envelope with Jerry on it looking for a donation. They only thing they have done directly for my family has been to pay for my son's scooter that we bought a year and a half ago AND I had to walk THEM through the process. We' ve been through a few directors since my son was diagnosed almost 5 years ago. So we moved on a year into this and found PPMD.

It's just a shame that when you watch the telethon each year, people get the impression that the MDA pays for everything --- physical therapy (NOT!), power wheelchairs (NOT), etc. I know that is what people I know think and look at me wide eyed when I inform them otherwise. They are literally in shock. I'm lucky to live in a state (NJ) where they have a catastrophic illness fund to help families that is really awesome. I don't know what Jerry Lewis' schtick is with MD but I don't like his comments about "cripples" but then again, he is a holdover from the old days when that is what they called people. Who knows why he does this but he does do it year in, year out. It's just too bad all those 50+ years of research and all we still have is steriods. Show me the money,.show me treatments to slow this *&$#@@ disease down! Now I will step down from my soap box.
Patti in NJ
www.caringbridge.org/visit/kevinfrank
Most of the families I know here in Maine, if you don't have medical insurance thru a parent, then most are on Mainecare ( state ) and Mainecare pays for everything from wheelchairs, hospital beds, flu shots etc.. After my husband left us in 1993 Adam was covered under Tricare thru his dad being in the Air Force and he also qualified for Mainecare. So, the MDA Office here hasn't had to pay for anything. I did get them to cover for a new manuel wheelchair for Adam, as it is good to have both a manuel and motorized chair....manuel in case the motorized one breaks down, or to get the boys into places that aren't accessible with the motorized chair, they give up to $2,000.00 for a chair, so, Mainecare covered his motorized chair and MDA did pay for the manuel chair ( his first one he got at age 12, he outgrew, but we still used it as it was in good condition still ), no support group in my area ( have to travel to Bangor to attend 2 1/2 hr. drive ).....I am going to approach them and ask why can't they supply gas funds and a hotel special rate for MDA families to attend, they pay mileage and for hotel rooms for their employees to travel and attend MDA events/fundraisers.....hey, go to the Natl. MDA site and you can look up jobs available at MDA Offices across the USA and see what they make and what benefits they get.....think most of the money the telethon raises and we Duchenne families raise goes to pay their salaries....am sure they must pay for some who don't have medical insurance either because their parents don't have medical insurance thru their jobs or make too much to qualify for state insurance. This year at the telethon I am going to tell the people who interview us live to not ask me what MDA does for us, because they don't do anything.....Adam went to camp once and neve went back, it just wasn't for MD kids, they say he is going to MDA camp, but it isn't there are other kids there with CP, etc.. I did, get them to pay for a adult camp weekend of fishing which was fun, I went with him....I told them he doesn't go to MDA camp, so why can't you pay for this camp trip....they did! I have done more for MDA since learning of Adam's dmd dx back in 1990 while living in SC then they have ever done for us and clinic visits are a joke! ( Just in case your MDA Office hasn't told you, that when you travel to clinic visits they reimburse you for fuel, just send them your mileage and gas register reciept, here I was a single mom and working 60 hrs. a week to support Adam and myself after his dad left us and they never told me this, I just learned a few yrs. ago )

You know I have always wondered too why Jerry Lewis is so strong in the Muscular Dystrophy community.....my mom once told me he was married and never paid attention to the kids afterwards.....I may be sticking out my neck and may be wrong, but, since she told me this ( she said she read this about him along time ago ), that maybe just maybe one of his kids from his first marriage could of had MD and he regrets not paying attention to him before he passed away....he has told the public before when people have wondered the same as us and asked him why he is so involved with finding the cure.....he said he will explain once the cure is found! This could be all hear say, that I have heard or read about.....but, it does get you thinking!
Where is the money going...lately we hear about all these big bank CEO's and other CEO's living high off the hog with everyone else's money......here we are raising funds for our boys while living the Duchenne Journey and educating the public and still no one knows what Duchenne MD is until you are told your son or even daughter has one of the over 40 forms of MD! Why is it a hush hush illness, why isn't it known as well as cancer, diabetes, CP, etc..
Patti I feel just like you!
Thanks for sharing your feelings,
Cheryl
I think it's a little unfair to say that MDA doesn't do anything for our boys. They've funded literally hundreds of millions of dollars of research. They funded the foundational research that is the basis for much of what's hapenning today - things like discovering the dystrophin gene. They continue to fund research in all NM diseases still today. We'd be 20 years behind where we are today if we waited for the government to do the research that MDA started. The telethons have brought in more than $1.5 billion dollars since they started. They've raised a tremendous amount of awareness. If anyone thinks MD doesn't have the awareness it deserves - imagine what it would be without the telethons and Jerry Lewis.

You can certainly argue that MDA could use more of their raised funds for programs. They're only rated a 2 star charity by Charity Navigator. You could also take issue with which programs they choose to spend on. But, they spent $146 million on programs for people with NM diseases in 2007, so they're definitely doing something for our boys.

Personally, I'm thankful for the MDA and Jerry Lewis, and all they've done to advance this cause.

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