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Millions of Americans Living With Paralysis Provided Hope with the Introduction of the Christopher Reeve Paralysis Act of 2003

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    Millions of Americans Living With Paralysis Provided Hope with the Introduction of the Christopher Reeve Paralysis Act of 2003

    Millions of Americans Living With Paralysis Provided Hope with the
    Introduction of the Christopher Reeve Paralysis Act of 2003
    To: Assignment Desk, Daybooks
    Contact: Maggie Goldberg of the Christopher Reeve Paralysis
    Foundation, 800-225-0892
    Colleen Dermody of Witeck-Combs Communications,
    202-887-0500 ext. 18

    News Advisory:

    -- Millions of Americans Living With Paralysis Provided Hope
    With the Introduction of the Christopher Reeve Paralysis Act of
    2003

    -- First-ever Paralysis Legislation Will Fund Research,
    Rehabilitation and Quality of Life Programs at The National
    Institutes Of Health (NIH), the Centers for Disease Control and
    Prevention (CDC), and the Department of Veterans Affairs (VA)

    WHO:
    Christopher Reeve, Chairman, The Christopher Reeve Paralysis
    Foundation (CRPF)
    U.S. Congressman Michael Bilirakis (R-FL) (invited)
    U.S. Congressman Sherrod Brown (D-OH) (invited)
    U.S. Senator Arlen Specter (R-PA) (invited)
    U.S. Senator Tom Harkin (D-IA) (invited)
    The Honorable Tommy Thompson - Secretary, Health and Human
    Services (invited)
    The Honorable Anthony J. Principi - Secretary, Veterans Affairs
    (invited)
    Joined by other Members of Congress

    WHAT:
    News Conference to announce the introduction of the Christopher
    Reeve Paralysis Act of 2003. If enacted, this bi-partisan
    legislation would authorize additional funding for paralysis
    research at the National Institutes of Health (NIH) through the
    National Institutes of Neurological Disorders and Stroke (NINDS).
    The legislation would also expand rehabilitation research
    activities through the National Center for Medical Rehabilitation
    Research (NCMRR).

    In addition, the legislation would develop new research programs
    on paralysis within the Veterans Health Administration (VHA) and
    would authorize the CDC to identify projects to improve the quality
    of life and the long-term health of persons living with paralysis
    and other physical disabilities.

    WHEN:
    Wednesday, May 7, 2003
    2:30 p.m.

    WHERE:
    TBA

    ------
    The Christopher Reeve Paralysis Foundation (CRPF) is committed
    to funding research that develops treatments and cures for
    paralysis caused by spinal cord injury and other central nervous
    system disorders. The Foundation also vigorously works to improve
    the quality of life for people living with disabilities through its
    grants program, paralysis resource center, and advocacy efforts.
    For more information about CRPF, please contact CRPF at
    800-225-0292 or visit our website at http://www.christopherreeve.org.

    http://www.usnewswire.com
    -0-
    /U.S. Newswire 202-347-2770/
    04/24 13:48

    Copyright 2003, U.S. Newswire

    http://www.usnewswire.com/topnews/qt.../0424-132.html
    http://stores.ebay.com/MAKSYM-Variety-Store

    #2
    YESSSS!!!!

    The revised version is finally here!!!!

    The Christopher Reeve Paralysis Act bill is the first of its kind ever! The future of spinal cord injury research in the United States is riding on the passage of this legislation!

    I have already written Michael Bilirakis who is my district's Congressman. I'm glad to see that he was invited.

    For all of those who haven't contacted their representatives to support this bill, please do so immediately!

    For more information about this bill including how to contact your reps. and sample letters, please see the following topic:

    http://carecure.org/forum/showthread.php?t=17225

    http://carecure.org/forum/showthread.php?t=17319

    The passage of this bill will ensure that spinal cord injury research gets an additional 100 million dollars a year in NIH funding. Guys, this is our chance to make a difference!!!!

    [This message was edited by seneca on 04-25-03 at 10:45 PM.]

    [This message was edited by seneca on 04-26-03 at 11:20 PM.]

    Comment


      #3
      Send an email to your whole address book

      asking your friends and family for a few minute's time to contact their representatives on your behalf. The phone numbers are always listed in the blue pages of the phone book, and all they need to do is call and say they'd like to see this bill passed right now.

      These forums are always full of people arguing vigorously in favor of this or that position . . . support for this bill is a no-brainer! Nothing to dispute, but something to DO. Let's use the arguing time to raise our voices where it could do some good.

      Comment


        #4
        Millions of Americans Living With Paralysis


        millions???????????

        Comment


          #5
          DA, Yes millions, remember all the "fuzzy math" during the elections ? As far as Bush needs to know, yes , millions are living with paralysis. 450,000 aren't worth fixin.

          Comment


            #6
            "Millions" I can believe.

            The Christopher Reeve Paralysis Foundation (CRPF) is committed
            to funding research that develops treatments and cures for
            paralysis caused by spinal cord injury and other central nervous
            system disorders.
            This will include Parkinson's, MS, ALS, TBI and stroke. So....millions is accurate.

            What is hard to believe is that "The passage of this bill will ensure that spinal cord injury research gets an additional 10 billion dollars a year in NIH funding." Ten billion dollars per year for SCI research? Man, I hope so. I had previously thought this bill was for a lousy three hundred million over three years. Significant, but not earth shattering. Ten billion per year, however, really is earth shattering. Even if it gets spread across all CNS conditions and not just SCI. That kind of money is what will definitely cure us. I really hope it's true.

            ~See you at the SCIWire-used-to-be-paralyzed Reunion ~

            [This message was edited by Jeff on 04-26-03 at 05:00 PM.]
            ~See you at the CareCure-used-to-be-paralyzed Reunion ~

            Comment


              #7
              Is it 10 billion per year or 300 million over the next three years?

              Comment


                #8
                I guess we'll have to wait until May 7th to know for sure. This years bill may include changes to the amount of money directed towards cure research but based on the 2002 bill, 100 million is probably a safe bet. According to Dr. Young:

                We should try to get the Christopher Reeve Paralysis Bill passed...in 2003.. If successful, this should provide approximately $100 million per year for paralysis research with an emphasis on spinal cord injury.
                It is asking for $300 million to support spinal cord injury research, rehabilitation, clinical trials, and education programs.
                [This message was edited by seneca on 04-27-03 at 12:09 AM.]

                Comment


                  #9
                  the easiest thing in the world is to fraud medicare. frauding nih should be easier. who will insure that the money goes toward real hard core research versus using millions toward painting smilely faces on a sliding board?

                  Comment


                    #10
                    The original bill was written after extensive negotiations and discussions with NICHD, NINDS, CDC, and the other federal agencies who are involved with the implementation of the bill. I have not seen the rewritten current draft of the legislation yet and therefore don't know what changes have been made. In the first bill, which was pulled last year, there was language and appropriations for the establishment of a clinical trial network, as well as consortia of laboratories that will work together. In preparation for the bill, I know that both NICHD and NINDS have been holding meetings and also organizing scientists and clinicians who might be potential applicants for grants.

                    Wise.

                    Comment


                      #11
                      Wise,

                      Assuming passage of the bill and funding is secured, how long do you estimate establishment of a clinical trial infrastructure and subsequent initiation of human trials? 2, 3, 4, 5 years?

                      Comment


                        #12
                        Schmeky, I have been urging NICHD for the past two years to initiate such a clinical trial network. Although the administrators were sympathetic, they had so many other priorities that the SCI Clinical Trial Network kept slipping off the agenda. Congress actually passed legislation suggesting a Traumatic Brain Injury Clinical Trial Network about two years ago and they got that going in less than two years.

                        I think that NICHD is planning the clinical trial network as soon as funding becomes available. Much depends on the response of the clinical community but I expect that many centers will want to be part of this network. If NICHD puts together a program, it has to go through all sorts of internal review and approval. This may take 6 months. You have to give people at least 6 months to write and submit the application. The review may take 3 months. Therefore, the earliest that the network would start would be a year from now. The network then has to work together, discuss the therapies that they want to test, and implement. This may take a year. So, two years is probably a reasonable time.

                        Wise.

                        Comment


                          #13
                          Comment

                          "The Foundation also vigorously works to improve
                          the quality of life for people living with disabilities"
                          And "vigorously works" to finance disabilities and reduction of health to be pervertly inflicted into imprisoned women and men, who are so related in their brains to those of our kind, that one can straight deduct to those of our ape mammal kind due to our kinds' high brain similarity.

                          One might assume that parts of such money would be used to further disgrace our history with more of such atrocious crimes.

                          Comment


                            #14
                            Wise, probably a stupid question but are you being consulted (along with many others in the field of paralysis study) as to how, where, when these monies are spent?

                            What do you think is the first/primary priority?

                            More importantly, what do you think the holder's of the purse strings (i.e. gov't) believe is their first priority?

                            Comment


                              #15
                              Phebus,

                              By virtual of having been in the field for a long time, I haveparticipated in most of the major developments of spinal cord injury research. In 1997, when I moved from NYU to Rutgers, I believed that we needed two things for the field.

                              1. more and better scientists doing spinal cord injury research
                              2 a clinical trial network to facilitate movement of therapies into trials.

                              In the mid-1990's, I worked very hard with Arthur Ullian to double the NIH budget in the mid-1990's. In order for the field to take advantage of the budget increase, however, we needed more and better scientists to apply to NIH for grants. In 1996, we reached the nadir of spinal cord injury research. There were only about 100 NIH grants supporting spinal cord injury in that year. When I moved to Rutgers in 1997, my highest priority was to train as many scientists as possible to carry out more spinal cord injury studies.

                              Over the past five years, at Rutgers, we have been holding 4 spinal cord injury workshops per year, training as many as 50 scientists a year to do spinal cord injury research. I don't know whether our efforts have had anything to do with it, the number of NIH grants for spinal cord injury has been increasing steadily during the period (see graph below). NIH is currently funding over 400 grants that is related to spinal cord injury research.

                              The next step is to get more spinal cord injury clinical trials going. I pushed for this on two levels. The first was to convince the industry that spinal cord injury is worth investing into. In 1995, there were no companies that had spinal cord injury as its primary mission and certainly no company that had money to invest in spinal cord injury clinical trials. The large pharmaceutical companies thought that spinal cord injury was a small and risky market. So, the only solution was to form a company that had spinal cord injury as its primary mission. I worked closely with Ron Cohen to form such a company (Acorda), in the hopes that it could lead the way for the rest of the companies. The second was to convince NIH to fund more clinical trials and a clinical trial network. Hopefully, this will happen soon. In the meantime, overseas clinical trials are going on. Our goal should be to make these trials as good as they possibly could be and encourage them to publish in U.S. journals.

                              The following graph gives the number of NIH grants supporting spinal cord injury research. Note that it was at about 100 grants in 1996. The number has risen steadily to over 400 grants in 2002. The numbers for 2003 are not accurate because the year is not yet over but I anticipate that it may be over 500 grants. Incidentally, by comparison, I included data concerning spinal cord injury grants involving stem cell (SC) transplants, embryonic stem cells (ESC), and olfactory ensheathing glia.

                              Wise.
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