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Thread: Miami Project

  1. #41
    Hi Barb, I'm not against cure research at all. I feel it is very important to continue on. What I'm against are these Foundations and docs saying a cure will happen in 5 years, 10 years, trials are starting now etc.. That's all well and good but what they don't tell those who are fervently waiting for a chance at it is that even if the trials are successful it will be years and years before it will be allowed for public use. They make it sound like we'll be walking but it's going to take more and more money. After so many years of this talk, it gets jaded.

    One of the things I would change is that Foundations tell us exactly what percentage of the funds raised is going towards research. As many of the posts here stated, they tried to get info from RHF on amounts for that and were rebuffed.

    Do I feel cure should be researched; absolutley. I also think Care should be funded as much because a Cure isn't going to do anyone any good if they can't benefit by it because of "care" issues. No one has been cured yet but our lifespan and quality of life has increased dramatically in just a few short years. this is mostly in part because of "Care" research. More people are walking out of ER centers rather than wheeling because of research into better first response. They aren't being cured, they had better care.

    Foundations are Private enterprizes, if we as a population don't feel they are doing enough about the research timetable, don't donate to them. If you don't donate to them quit the bitching about what they are doing and not doing. That's what I'm saying.

    Cure research etc. I agree is my not fight. Mine was accessibility, better equipment, acceptance, jobs for disabled, asccessible education,better care. Those who are injured in the last 10-15 years have no idea what life quality was like. Anyone C5 and above was usually regulated to long term facilities. Pearson Hospital was chock full of high level quads. I won't name names but you personally know a few that were there. I may be a little biased about care vs cure but it is because of those days that I am.

    Maximize your potential to the fullest, don't give up hope and have a good life. That's my message.
    Last edited by Patrick Madsen; 10-23-2011 at 05:04 PM.

  2. #42
    Miami Project saved my life in a way back in 87. It gave me hope and gave me re-socialization which I desperately needed at the time. Everyone involved was so comfortable, accepting of those of us with SCI, we always had social, fund raising events, parties....at 19 that was most important....still kinda is

    I'm no longer sure of a cure but the hope is important for many and accepting, living our lives as we are is the most important until something better comes.
    "The sweet is not as sweet without the bitter"
    ~"Vanilla Sky"~

  3. #43
    Patrick Madsen-isms!

  4. #44
    Senior Member KIM's Avatar
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    Quote Originally Posted by Lorrie View Post
    Miami Project saved my life in a way back in 87. It gave me hope and gave me re-socialization which I desperately needed at the time. Everyone involved was so comfortable, accepting of those of us with SCI, we always had social, fund raising events, parties....at 19 that was most important....still kinda is

    I'm no longer sure of a cure but the hope is important for many and accepting, living our lives as we are is the most important until something better comes.
    That attitude will keep us on a chair forever.

  5. #45

    Angry this the CURE FORUM!!!!!!!!!!!!!!!!

    Quote Originally Posted by Lorrie View Post
    Miami Project saved my life in a way back in 87. It gave me hope and gave me re-socialization which I desperately needed at the time. Everyone involved was so comfortable, accepting of those of us with SCI, we always had social, fund raising events, parties....at 19 that was most important....still kinda is

    I'm no longer sure of a cure but the hope is important for many and accepting, living our lives as we are is the most important until something better comes.
    then why come here to this forum! it amazes me how people come to the "CURE" side CareCure message board to say how "comfortable" and "accepting" they were and STILL ARE with living with a sci.

    they should join the rick hansen org. he like the bouncantis love fund raiser, they are pros at it. between MP and RH they have raised close to half a billion dollars and for what? but i regress. i have never been to one of their socials or fund raising events...........they just might be "tha shit". they might so great that i might just fall in love with living with a sci.
    "I'm manic as hell-
    But I'm goin' strong-
    Left my meds on the sink again-
    My head will be racing by lunchtime"

    <----Scott Weiland---->

  6. #46
    From your post, you sound like one of those that likes to sit around , grunting and complaining because others aren't doing what you think they should be doing. Have you ever donated to any Foundation or done any work towards the cure? You do nothing, as your post states, yet have the audacity to critisize those who do; Lorrie is actively engaged in SCI related areas, what are you doing?

    It's not a matter of loving to live with a sci, it's a matter of this is what we have and yeah, I love living with a SCI more than I do, not living. Get used to it man, cause a practical cure is years down the road. At least we can say there will be a cure someday. Before, that was never even said. You want it to happen faster, get out and start something up yourself. Rick started one while broke, I know I was there, you can do the same.
    Last edited by Patrick Madsen; 10-24-2011 at 03:41 PM.

  7. #47
    Orgs like RHF, Buoniconti,.... will never change the way they are working and their objetives, and they have the rights to act like they want, so why are we still talking about them in this forum?
    Let threads like this die in peace.
    Last edited by Isildur; 10-24-2011 at 04:13 PM.
    -Ramps in buildings are necessary, but it would be usefull to have another ones for people (mind/heart).....

    -Hoc non pereo habebo fortior me

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