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Thread: Christopher & Dana Reeve Foundation

  1. #1

    Christopher & Dana Reeve Foundation

    From the Christopher & Dana Reeve Foundation Web site:

    Areas of research:

    ....scientists and clinicians increasingly are turning their attention to biomedical devices and new forms of rehabilitation that already are restoring some measure of independence to people with severe spinal cord injuries.

    http://www.christopherreeve.org/site...The_Basics.htm

    Are we happy with that??

    I am NOT!!!
    In God we trust; all others bring data. - Edwards Deming

  2. #2
    Senior Member lunasicc42's Avatar
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    that is wack!!!!
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


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  3. #3
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    Dear Paolocipolla,
    I am not happy either. Our problem is the SCI field is not a major money maker to many companies. That is why some companies like Re-walk and Berkley E-legs are spending big bucks to push their products to the insurance industry/Medicare. If they can convince them to pay for the units , you will see them come to market even faster. A good example was the I-bot wheelchair. They stopped making it because the insurance companies and medicare would not fund them. Insurance companies are worried for positive clinical trials for SCI,. I truly believe this. They don't want to spend tons of money for Rehab. It is a vicious cycle with companies. The problem is we need tons of money for more research. I wish I had millions to pour into a research fund for all of us. We have to find a way to look like a profitable business. An example is Cancer. Boat loads of money are poured into cancer research. Why, because of the payback. I wish I knew a better answer. I wish you and your family a very Blessed Christmas season. A Blessed Healthy New Year Too!
    Best Regards,
    Joe Monte

  4. #4
    Senior Member 0xSquidy's Avatar
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    They published on twitter a link to an article talking about their funding. Most of it were going to equipment and pt stuff, where they said something like "we are funding the most promising research"....REALLY? EQUIPMENT? They usually answer my tweets, this time though, they didnt:

    "@ReeveFoundation Really? Is that the most promising research you are funding?"

    This stinks so much.
    Don't ask what clinical trials can do for you, ask what you can do for clinical trials.

    Fenexy: Proyecto Volver a Caminar

    http://www.fenexy.org (soon in english too)

  5. #5
    I wrote a series of letters to the foundation this summer inquiring about their research projects. I was disappointed by their response, so I'm not surprise about the link posted above. I was dismissed. Maybe I should post my letter? It is hard to be critical sometimes online, because of how sci's are often told that we are divisive.

    The foundation has been of great benefit to us in the past, I feel they have lost their fire and focus.

  6. #6
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    JoeMonte-

    You make a persuasive argument about insurance companies sabotaging SCI research, as a good stem cell treatment would of course require lots more PT.

    Logically that leaves government as the entity in whose interest it is to find a "cure". Medicaid is the one spending 70% of funds on disabled folks. Yet government is strongly for short-term gain in these years. It would take a leader of John McCain's caliber and integrity to even get visibility for this issue. Good old democratic pressure on our fellow voters isd the only road open, I think.

  7. #7
    It's not just the insco's although they certainly deserve their share of blame. It's also the ancillary medical industry as well. In the words of the late, great Chuck Carson, the SCI population represents a "statistically calculable source of income" to those with a vested interest. Don't count on Big Brother to help either regardless of which political party is in power.

  8. #8
    guys, YES!!! feel we need to cut throgh as much --it as we can. As far as I CAN SEE RIGHT NOW, THERE ARE 2 TRIALS FOR HUMANS WITH SPINAL PROBLEMS; GERON AND WISE. All I can say and recommend is that we all focus on these trials and follow thru hard and identify any new real advancements with schedules that are believable. I most certainly know that groups and researchers are only interesed in protecting their turf.
    keeping on

  9. #9
    paolo, I've contacted TheReeve Foundation about their commercials showing wheelcahirs climbing mountains and concentrating on mechanical devices. when I contacted them, I got a response from their research team that they go to work everyday thinging of a cure. I then asked what and be specific are you workin gon right now that will become a potential therapy fo rus. and more impritantly, when. No answer.

    keeping on

  10. #10
    www.christopherreeve.org

    You can join their forum discussions and receive their email newsletters at their website. Lots of information is posted and discussed.

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