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Celine Dion's cousin injured

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    #16
    Thank you, Belle. Max, you need to learn more about the issues around the MDA Telethon. Many people with MD and other disabilities find this a degrading and dehumanizing experience that attempts to use pity to get money from people instead of addressing fund raising in a professional and compassionate way (such as Rally for the Cure)

    (KLD)
    Than the happy para would be ok, and ads would not have to portray a vent dependant quad. And wheelchair sports would be ok. If I remember correctly the rally for the cure was high priced and then it was lowered to attract a sea of people in wheelchairs. Oh, yea it was so they could meet and mingle. The wheelchairs weren't for pity.

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      #17
      LOL...YA THERE GO!!!

      Now its about Para vs Quad,wheelchair sports and socializing wheelchair folk...PERFECT..That should just about cover everything...

      DAMN YOU CELINE DION,DAMN YOU TO HELL....THAT GOES FOR YOU TO LEWIS...

      ~We must save the princess,or die trying~..Mickey Mouse

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        #18
        Originally posted by Belle:

        There's a bit of controversy areound the MDA and and the telethon these days. Some of the afflicted folks feel that it is too much of a pity party for their comfort and puts forth a highly negative image of the disabled as people unable to help themselves. I can't speak for the nurse, but I would guess this is where she is coming from.

        *************
        AB wife of T8 complete para
        I have never seen controversy cure a damn thing.
        Disabled people can help themselves quite often believe it or not.
        Now curing themselves sometimes becomes very very tricky.

        Everybody needs help sometimes with something.

        If the controversial folks could show a definate way of bringing in huge..necessary..
        charitable dollars without showing the reason for these dollars please do so right now.
        Not just talk..BIG HUGE monetary gains to be used to fund research, equipment, (that BTW
        insurance companies don't often fund)..and often the insurance companies don't fund for the care of some individuals in this country..so why not get on them..instead of people trying to find the money..
        And insurance companies don't give a damn if you go to summer camp.
        Many of the people we are talking about are too young to get a job..and many won't LIVE long enough even to get one..so how do they contribute?
        Now take that away too..it's not important?

        You want to have a controversy have it over
        why the government won't pass Mr. Reeve's bill..not over successful fundraising.

        Most of the fundraising people involved are over 50 and over 60 and 70.
        Now is the prime time for cures..and people are too concerned about one ailment vs. another.

        The scientists need money not controversy.
        And don't tell me that the SCI population wouldn't give their right nut for a Jerry Lewis type personality.
        Well they are a dying breed. Hooray for evolution..this might be something you don't want to become extinct in this greedy ass world we live in today.

        What about ST. Jude's? Are they wrong too?
        Are the cures they are finding wrong too?
        Are those kids wrong to show how fing awful
        their disease is..sure the world now runs on pity sometimes..but without it people are relatively numb.

        Help is on the way.

        [This message was edited by Lindox on 09-11-04 at 05:31 PM.]
        Life isn't about getting thru the storm but learning to dance in the rain.

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          #19
          To Lindox:

          Here here...applause..

          Thank YOU!!!!

          Mary
          1FineSpineRN

          Comment


            #20
            get cash for cure and care by whatever means so long as they're legal

            use pity if we have to - if an AB doesn't pity me because of my condition then they're probably callous - that needn't mean that I am pathetic person but my condition is pathetic

            I agree; Celine Dion's cousin's being injured is good news for us but very sad news for their family

            Comment


              #21
              There is something about "Professional"
              fundraising events.

              They have an aura and believe me you see it
              often in California, of being exclusive.

              SCI has a stigma around it..unjustified..but still it is there in the publics opinions..
              that stigma is HUGE settlements..the average
              person thinks this holds true for the entire
              SCI population.

              And when fundraising is done in an aura of
              exclusivity..well that re-enforces the myth.
              It doesn't get the millions of 25 dollar donations..because people feel it won't be necessary..or even do any good.
              This I don't know for sure..but could even include a hundred dollars and above range.

              Some fundraising..IE: political campaigning can survive and thrive in exclusivity...maybe
              SCI being a lower number of included may also be able to gain enough funding through this type of activities..I dont' know..but the cure is as expensive IMO as any other type of paralyzing condition..so what is the better way?

              Cancer, heart disease, even diabetis is funded through fear moreso then anything because a majority is involved.

              One thing neuromuscular diseases and SCI do have in common is people aren't as afraid of this happening to them in their lifetime or the lifetime of their children due to the odds factor..

              ALS has joined MDA..why?
              MO money..to stay exclusive sometimes when you are a minority just doesn't work.

              Help is on the way.
              Life isn't about getting thru the storm but learning to dance in the rain.

              Comment


                #22
                Lindox

                that's so true - people are not afraid of SCI because of the odds and because somehow they think disabled people are 'different' (didn't try hard enought to walk again) so SCI won't happen to them - and, yes, a lot of people do think that we're amply provided for even if we don't get a lump sum settlement - they must think it's the tooth fairey or something

                Comment


                  #23
                  Hi everyone!

                  Was very surprised at how this post went from Celine Dion's nephew being injured to the Jerry Lewis "thing". Wasn't sure if I should even post this.

                  I mentionned to my brother what I replied and he corrected some info I posted. I assumed the accident was very recent and that he went to Colorado shortly after - it wasn't that recent. It was a downhill skiing accident and he did spend quite some time at rehab in Montreal before going to Colorado. I also asked if Celine was ever spotted visiting? Not that he's heard and I'm sure he would have heard.

                  About Celine keeping it low key - she obviously is - maybe her contribution was paying for expenses in Colorado. It sure would be nice if she would get involved in SCI charity events or even making more people aware of SCI.

                  I am someone who had very little knowledge of SCI until my brother had his accident (7 weeks ago). I think I grouped all people in wheelchairs in the same group. All the information I have learned since has come from this and 2 other sites and I'm sure they were the best places for me - to get information and support. It just made me feel better talking to people who had already gone through it.

                  Even with Christopher Reeves out there, I don't think I was really listening to him - at least not to details. It would be great if people knew exactly what people with SCI have to deal with everyday (specifically someone who is not rich, nothing against Reeves, he's made people more aware but I think everyone needs to see what "non famous people go through.)

                  There is not much good about a SCI - the one good thing about it is, with every SCI injury there are hundreds of new people who knew nothing about it that start learning about it. I know in our situation, between Gerry, myself, my siblings, my parents and many friends (all telling others about it) there are so many more people who now know a lot about SCI. It's too bad that it seems to be the only way to really find out about it - there should be a better way.

                  I'm curious to know if Oprah has ever done a show on SCI (not one with C. Reeves)? Maybe we should all write to her - that would be a good way to educate millions of people on this and maybe with people understanding more about it getting money for it would be easier - maybe not.

                  I agree with Lindox - I don't have "nuts" but if I did, I would also give my right one for a Jerry Lewis personality.

                  Dee

                  Comment


                    #24
                    Originally posted by Dee L.:


                    I'm curious to know if Oprah has ever done a show on SCI (not one with C. Reeves)? Maybe we should all write to her - that would be a good way to educate millions of people on this and maybe with people understanding more about it getting money for it would be easier - maybe not.



                    Dee
                    Only thing I've seen on Oprah was on a 'Worst Mistake of My Life' episode a girl about my age appeared. She had broken her neck in a MVA while reaching down for her phone. Oprah found out she had actually been heavily drinking the night before the wreck so would not let her on the show for lying. The girl eventually was on the show fessing up to what really happend...

                    Btw I do not watch Oprah or whoever she is!

                    Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know that, so it goes on flying anyways--Mary Kay Ash
                    Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know that, so it goes on flying anyways--Mary Kay Ash

                    Comment


                      #25
                      Originally posted by Mary:

                      To Lindox:

                      Here here...applause..

                      Thank YOU!!!!

                      Mary
                      Mary,
                      Don't need thanks..but your welcome.
                      This really gets to me..sorry for the extended rants.
                      It is a shame Jerry missed his mark..not for him..for the kids.
                      I've worked the phones in LA for them quite a few times..and boy those people are sincere..
                      and work hard to get those much needed bucks.

                      Help is on the way.
                      Life isn't about getting thru the storm but learning to dance in the rain.

                      Comment


                        #26
                        Hi, I am new to this forum, but noticed this post. I too was in rehab at the same time as Celine's nephew. It was a downhill skiing accident, happened last winter. He was in rehab a long time (and still is, though not in Montreal). He left MTL in September, to go to the US for rehab. He is very nice and so is his family.

                        Originally posted by Dee L.:

                        Hi Chris and SCI Nurse,

                        My brother Gerry is in rehab in Montreal. Was transferred to a new room and was told Celin Dion's nephew (he is only 17 years old) had just left the same room. He also said the nurses mentionned that he's a pretty high quad (not sure but I think he said it was a skiing accident - must of been water skiing if it happened recently, even up in Canada we are nowhere near having snow yet) He left the room because he was being transferred to Colorado.

                        By the way guys, I posted an update on Gerry a few days ago and would like to hear your thoughts on it. (New SCI, Desperately awating info on SCI - C7)

                        Hope to hear from you soon.

                        A friend from the north

                        Dee
                        Marieke

                        Comment


                          #27
                          Hi MK1 welcome to carecure forums. [img]/forum/images/smilies/smile.gif[/img]

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