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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Keith,

I don't often respond to threads, but I agree with you. I don't believe that Jerry Lewis had any ill intentions of what is being quoted that he said. I don't believe that and unfortunately there are many many awful diseases in this world that fall underneath the MDA umbrella. I feel the same way that nothing is coming fast enough for our boys, but I feel that there is benefits maybe not as many as we want, but MDA does provide benefit to all of us. Suggestions are great for the MDA, but anger is not the way.
Hi Keith:
You are correct. They have funded much reasearch and I would not want the MDA to go away or we'd never get any money for DMD, but they need to do a little more for individual families they way they portray themselves each year on the telethon. All my relatives and friends have commented so many times over the years thinking we get help from them and we really haven't. That is my feeling. Don't portray things in a skewed manner -- they don't pay for PT and really don't pay for much. The hard part is that they haven't come up with any treatements yet -- yes, many things are in the pipleline. My son is 9 1/2 and the clock is ticking. There is a lot of hope for us all but it just seems as if the research for DMD hasn't been enough or we would have had something by now. It's finally being stepped up and I think it is in part to PPMD and Pat Furlong's efforts. However we get there I'm fine with that. My uncle had DMD and died 65 years ago from this. Is it too demanding for me to think that some kind of treatment (other than steroids) to be here by now. I'm not even talking a cure. I'm not a researcher, so maybe my expectations are too high. Maybe not.

Patti

Keith said:
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.
Yes, we would be maybe 20 years behind if Jerry Lewis wasn't supporting MDA for his own personal reasons of what keeps him year after year supporting MD research. But, once again if it weren't for adults with MD and parents of children with MD that sat around their kitchen table back in 1950 MDA wouldn't have been founded, ( such as Pat and other parents of MD children sat around their kitchen table and founded PPMD ). And the same goes for CureDuchenne and Augie's Quest....all started to help speed the research to find the CURE!

If some researchers would band together with researchers trying to find Cures for all terminal illnesses and not waste precious time at trying to allow people to order their baby the way they want them to be as I learned about on Headline News today! Trying to make the perfect baby instead of trying to find Cures for deadly diseases....this is why FDA has a time with approving more stem cell research to help find CURES for terminal illnesses and not for fertility doctors to help people select the sex, eye color, hair color, height etc. of their unborn child. Others are taking advantage of what stem cell research is for....it was founded to help CURES for so many illnesses out there today.

The hardest part to me about raising a son or any child with any disability is trying to help them have a positive attitude and to love who they are in a world that is so, prejudice to people who look different.

Jerry's words have been misquoted many times! It is true he is just telling the public about a child in trouble and he is just telling the true facts....it is the public that thinks he wants them to pity MD Families and he is saying if that is what they feel for us then let it be that as it is bringing money in for our cause to find the CURE! What he does is no different than Children's Hospitals with Marlo Thomas ( may have her name incorrect ) when they show kids with cancer.....or the Children's Miracle Network....they don't get slammed for showing sick kids during their Telethons to raise money for their cause, they are doing the same thing that Jerry does during his Telethons.......you have to sell the cause it is the American way.....if he has to show little children with any form of MD to get some pity from some viewers to help our cause by touching their hearts thru this method, then go for it Jerry. But, at the same time he shows alot of positive during the Telethons each year!

I always felt that where many things are covered either thru insurance or even state programs that more money coming into MDA each year should ge to research, and it does now, MDA made many changes over the years to make sure more funds do go towards research.

I may touch on something that I know I feel and it may explain what others are trying to say about MDA......I am feeling the same pain at losing a love one to DMD, just as a family feels knowing they could lose a love one to cancer.....there are so many places in every community that supports these cancer families....support groups everywhere for them......MDA says they support their families thru support groups......where is my support group from MDA.....I deal with alot alone! I feel as if my feelings don't matter as my son only has DMD and not cancer......you know alot of times I wish Adam had cancer and not DMD.....because my hands wouldn't feel tied as they do with him having DMD....because with cancer there are things to try such as chemo to give him a chance at living.....like I said before there are many survivors of cancer today and still no survivors of MD!

I think alot feel like where is the support for our families like the support is out there for cancer families.....we are dealing with the same thing......losing a love one to a illness!

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