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Thread: Ten frequently asked questions concerning cure of spinal cord injury

  1. #521
    swh2007, I appreciate your post; I'm commited to move forward with those that want to move forward. I think if we can unite our voices to the right parties, we can become a focus for discussion by those that could and should help.

    I want to make sure that Dr. Young agrees with the path forward. He has dealt with everything and anything on this matter. Let's all hope that the trials that he is conducting yield positive results; a ralling cry for all of us.

    We must stand together and look past those who want to postpone advancement; but include those same people for a race for improvement. I want all to benefit in someway. Include all, but focus on moving forward.

  2. #522
    Senior Member
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    Thanks. What can we all do to unite to achieve common goals, do our best to take care of our own, build our active membership and grow our voice, and be an effective voice to raise awareness, raise money, and influence research and other matters that affect us in a positive way? To me, these are the important questions for the CC Community to answer and act upon.

  3. #523
    swh2007; can't be any clearer than that. I've asked Wise for his take on whether we sould contact Tom Harkin as a group or individually for input on what the Senator is doing or what he knows. Do we unify as one voice making ourselves known; not that we're not known,or do we run the risk of starting something we don't want at this time. We have Wise's human trials and other possible advancements goin on though out the world. We may have some concrete evidence of a possible cure this year. Again, I'm only saying maybe the possibilty of a cure; don't want to get ahead of myself. But Tom Harkin has a website on his profile. I've e-mailed him but got no response thus far. He is known as a champion of our endeavors and we can support him as he supports us. Let's keep talking and take appropriate action.

    Thanks'
    T.J.

  4. #524
    Tom Harkin has a nephew with spinal cord injury. He is very aware of what it is like to have spinal cord injury and understands the need for research to achieve a cure. The important thing when talking to politicians is to know what you are asking for and not just ask the politician for general support.

    Tom Harkin has the power and will to put more appropriations into the Christopher and Dana Reeve Paralysis Act (he knew both of them personally). It has been passed by both houses of Congress but the appropriations for NIH for this particular act has not been made. The level of appropriations comes from the Health and Human Services Committee that Tom Harkin chairs.

    I urge people who want to be involved to read about the history of the bill from our Legislation and Advocacy Forum and to find out the latest status of the law and how much funding has been appropriated and whether any part of it has been implemented. Armed with that information, then find constituents in Iowa (there are many families with spinal cord injury who are on this site) and put together a visit to his office there. In addition, a team can visit his office in Washington. Off your help, listen to his staff concerning what he would like to do, and what you can do to help.

    This process is called finding a champion for your cause and supporting that champion to achieve what legislation and appropriation you would like to see.

    Wise.

  5. #525
    Wise; my understanding from you is that funding is defective and not what we would like it to be; rather than looking for clues; I'm wondering if Sen Harkin is on a plan for funding and for a path for a cure; ie. your trials or any other investigation he has investigated and deemd worthy. I'm well aware of the path that these take and also the fact that stem cell therapy is controversial. That's why I asked if the latest finding on using unbilical cord blood cells without the probl;em of rejection would eliminat the problem of insufficent amounts. You have sited numerous times that this was a formidible problem in terms of cost. You also have indicated that this finding announced last week was a significant breakthrough. So my point is does Sen Harkin nees our help or does he have a plan going forward? If so what is his plan and what can we do to help.

  6. #526
    Dr Young, I noticed that the posting of the 10 recovery questions is 7/1004. My question to you is; doew the statements still apply or do they need updated? If so, could you give us an updated version.

    ThNks in advance,
    T.J.

  7. #527
    Quote Originally Posted by keeping on View Post
    Wise; my understanding from you is that funding is defective and not what we would like it to be; rather than looking for clues; I'm wondering if Sen Harkin is on a plan for funding and for a path for a cure; ie. your trials or any other investigation he has investigated and deemd worthy. I'm well aware of the path that these take and also the fact that stem cell therapy is controversial. That's why I asked if the latest finding on using unbilical cord blood cells without the probl;em of rejection would eliminat the problem of insufficent amounts. You have sited numerous times that this was a formidible problem in terms of cost. You also have indicated that this finding announced last week was a significant breakthrough. So my point is does Sen Harkin nees our help or does he have a plan going forward? If so what is his plan and what can we do to help.
    Keepingon,

    Federal funding of spinal cord injury is deficient. The Christopher & Dana Reeve Paralysis Act was passed by the money for the act from NIH had not yet been appropriated. I don't know the answers to the following questions:
    • How much money was appropriated if any for the act at NIH?
    • If not, why not. If yes, how much? How can we increase it?
    • What is the impact of the recent budget limitation agreement on NIH?
    • Will there be a cutback of spinal cord injury research funding?

    Wise.

  8. #528
    Quote Originally Posted by keeping on View Post
    Dr Young, I noticed that the posting of the 10 recovery questions is 7/1004. My question to you is; doew the statements still apply or do they need updated? If so, could you give us an updated version.

    ThNks in advance,
    T.J.
    T. J.,

    I have made continuous commentary on the original post over the past five years. I don't think there has been sufficient change for me to remove or update it right now.

    Wise.

  9. #529
    Thank you Wise; carry on!

    T.J.

  10. #530

    SCI Cure or regaining function, what's the real issue?

    Looking for a "cure" seems to me that you are hoping for a quick fix. Retraining is the answer. Have a look at Project Walk - Google it. Amazing results.

    Just finished a course there with my son and in the 4 weeks we were there we saw several improvements. Not a quick fix but progress by any means is still progress. We left with a complete program of what to do to continue progressing.

    May not be for all but any good information is information worth sharing.

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