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Thread: Letters needed to Senator Judd Gregg of New Hampshire to gain his support of the Christopher Reeve Paralysis Act

  1. #1

    Letters needed to Senator Judd Gregg of New Hampshire to gain his support of the Christopher Reeve Paralysis Act

    New Hampshire's Senator Judd Gregg's support of the Christopher Reeve Paralysis Act is essential for the passage of the bill. We need people, particularly his constituents in New Hampshire, to write letters to him to urge his support for the passage of the bill.

    He is a Republican with a strong record in supporting legislation for special educational funding ("No Child Left Behind") and protecting the environment (see http://www.senate.gov/~gregg/). He chairs the Senate Health, Education, Labor, and Pensions Committee. He also is a member of the Senate Appropriations Committee and the Budget Committee. His support of the bill will ensure that the bill receives sufficient funding.

    The Christopher Reeve Paralysis Act is S1010 (attached), introduced by Senators Harkin, Spector, and Kennedy. It calls for NIH to establish a multicenter clinical trial network to improve functional mobility, promote behavioral adaptations to functional losses especially to prevent secondary complications, assess the efficacy and outcomes of medical rehabilitation therapies and practices and assistive technologies, developing improved assistive technology to improve function and independence, and to understand the whole body system responses to physical impairments, disabilities, and societal and functional limitations. The following statement was included in the Congressional record:

    STATEMENTS ON INTRODUCED BILLS AND JOINT RESOLUTIONS -- (Senate - May 07, 2003)

    Due to efforts led by the National Institutes of Health and the Christopher Reeve Paralysis Foundation, our Nation stands on the brink of amazing breakthroughs in science for those with paralysis. However, the biotech and pharmaceutical industries have not invested in paralysis research because they believe the market does not support the private investment. There is an urgent need for the Federal Government to further step up its commitment in this area. The Christopher Reeve Paralysis Act would do just that.

    テつ*テつ*テつ*By establishing Paralysis Research Consortia at the National Institute of Neurological Disorders and Stroke, we can substantially increase our ability to capitalize on research advances in paralysis. These consortia would be formed to explore unique scientific expertise and focus across the existing research centers at NINDS in an effort to further advance treatments, therapies and developments on one or more forms of paralysis that result from central nervous system trauma and stroke.

    テつ*テつ*テつ*Additional breakthroughs are underway in rehabilitation research on paralysis. Federal funding for rehabilitation research at the National Center for Medical Rehabilitation Research at NIH is showing real potential to improve functional mobility; prevent secondary complications like bladder and urinary tract infections and ulcers; and to develop improved assistive technology. These rehabilitation interventions have the potential to greatly reduce pain and other complications for people with neurological disorders and stroke and, at the same time, save millions in health care costs.

    テつ*テつ*テつ*Over the past 20 years, overall days in the hospital and rehabilitation center for those with paralysis have been cut in half. Those with paralysis face astronomical medical costs, and our best estimates tell us that only one-third of those individuals remain employed after paralysis. At least one-third of those with paralysis have incomes of $15,000 or less.

    テつ*テつ*テつ*To date, there are no State-based programs at CDC that address paralysis and other physical disability with the goal of improving health outcomes and prevent secondary complications. This bill will, for the first time, ensure that individuals with paralysis get the information they need; have access to public health programs; and support in their communities to navigate services. Ultimately these programs will help remove the barriers to community participation and help improve quality of life. The bill also establishes hospital-based registries on paralysis to collect needed data on the true numbers of individuals with these conditions, and it invests in population-based research to see how various therapies impact different people.

    テつ*テつ*テつ*We are on the brink of major breakthroughs for individuals with neurological disorders and stroke that result in paralysis. This bill will ensure that the federal government does its part to help more than 2 million Americans.

    テつ*テつ*テつ*When Christopher Reeve was injured, he put a face on an issue that has been neglected for too long. Since then, his tireless efforts to walk again, coupled with his passion and commitment to improve quality of life for others with paralysis, make him an inspiration to all Americans.

    テつ*テつ*テつ*It is a pleasure and an honor to lead a bipartisan group of Senators, along with the support of a number of disability groups, including the American Stroke Association, the American Heart Association, the Christopher Reeve Paralysis Foundation, the National Family Caregivers Association, the National Spinal Cord Injury Association, Paralyzed Veterans of America and Easter Paralyzed Veterans, in introducing this bill.
    The bill is currently in the Health, Education, Labor, and Pensions Committee (referred May 7, 2003).

    You can send Senator Judd Gregg an email at http://www.senate.gov/~gregg/sitepages/e-mail.htm. Although his staff "regrettably" only responds to emails from New Hampshire, I think that they will sit up and take notice if they get several hundred emails supporting the Christopher Reeve Paralysis Act. His fax number is 202-224-4952. The following is a letter that I wrote to provide a guide.


    The Honorable Judd Gregg

    Dear Senator Judd,

    Within the next week, the Senate Committee on Health, Labor, Education, and Pensions will consider the Christopher Reeve Paralysis Act (S.1010). As you know, this important bill will direct the NIH to focus its efforts to advance therapies for paralysis that result from central nervous system trauma and stroke. I strongly urge your support of this bill and providing the necessary funding to enable the NIH to achieve the worthy goals of this bill.

    I am a spinal cord injury researcher who has worked for the past 20 years to develop therapies for spinal cord injury. While our research has improved the lives of many people with spinal cord injury, we do not yet have effective therapies that restore function to people with chronic spinal cord injury. Over 2 million Americans suffer from paralysis resulting from brain and spinal cord injury and stroke.

    Most scientists in the field believe that it is not a matter of if but a matter of when therapies will be available to reverse paralysis, including treatments that regenerate the brain and spinal cord. Time is of the essence. The Federal government has not invested sufficiently in the field to allow promising basic research to reach clinical practice. For example, while care of people with spinal cord injury costs this nation over $10 billion per year, we have invested less than $100 million, i.e. 1% of cost, into research to reverse paralysis.

    The Christopher Reeve Paralysis Act (S.1010) will address major deficits in this nation's paralysis research:
    窶「 Paucity of clinical trials testing promising therapies that reverse paralysis. S.1010 will direct National Institutes of Health to establish a clinical trial network to accelerate translation of promising research into clinical therapies.
    窶「 Inadequate rehabilitation research. Recent studies suggest that intensive and aggressive rehabilitation play an important role in restoring function. S.1010 will support rehabilitation research aimed at reversing paralysis.
    窶「 Limited national information. S.1010 will support state-based population based research organized by the Center for Disease Control to assess the impact of paralysis and therapies.

    It is crucial that the Christopher Reeve Paralysis Act gets the requested amount of funding. Insufficient funding will just prolong the agony of millions of families who have been waiting decades for research to yield restorative therapies. The investment will be worthwhile not only from a humanitarian perspective but also economically. A single therapy that restores function to even 10% of individuals with paralysis will save the government over 10 times the cost of the investment.

    Thank you very much for your attention.

    Sincerely,



    Wise Young, Ph.D., M.D.
    Professor & Chair, Dept. of Cell Biology & Neuroscience
    W. M. Keck Center for Collaborative Neuroscience
    Rutgers University, 604 Allison Road, Piscataway, NJ 08854
    email: wisey@pipeline.com, web: http://sciwire.com

  2. #2
    Here's the contact information for Senator Gregg:

    Address
    The Honorable Judd Gregg
    United States Senate
    393 Russell Senate Office Building
    Washington, D.C. 20510-2903

    DC Phone
    202-224-3324

    DC Fax
    202-224-4952

    E-mail Address
    mailbox@gregg.senate.gov

    You can access more information about Senator Gregg by clicking here.

  3. #3
    More on Senator Judd's priorities: http://gregg.senate.gov/sitepages/bio.htm

  4. #4
    Thx Wise, Sen.

  5. #5
    Here is the letter that I actually sent.

  6. #6
    I recently did a quick search of our registered membership and found ten people who are residents of New Hampshire. I was wondering if people would mind joining a private topic to talk to some of the people who are leading the fight to get the Christopher Reeve Paralysis Act passed...

  7. #7
    Senior Member 94Vette's Avatar
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    Just tell me what I need to do Dr. Young.

    I live in Stoddard New Hampshire.

    Originally posted by Wise Young:

    I recently did a quick search of our registered membership and found ten people who are residents of New Hampshire. I was wondering if people would mind joining a private topic to talk to some of the people who are leading the fight to get the Christopher Reeve Paralysis Act passed...

  8. #8
    Senior Member kilgore's Avatar
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    Here's my letter. It doesn't matter that we're not all from NH. Let him know how important this is!

    Senator Gregg:
    Eleven years ago this summer, I hiked to the top of Mt. Washington. Five years later, I fell at a construction site and suffered a devastating spinal cord injury. Every day, I check the progress of the latest research to cure spinal cord injuries and similar conditions, and I am convinced that I will make it up that trail to the Mt Washington lodge again. If I am to make it there as a young man, I will need the kind of support and medical infrastructure outlined in the Christopher Reeve Paralysis Act. I urge you to support this legislation. It provides the shortest path to a better life for me and millions of other disabled Americans.
    Thank you.

  9. #9
    Senior Member 94Vette's Avatar
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    Thanks for the info Seneca.

    I have faxed a letter to the Senator and emailed everyone I know in NH with a plea to contact him also. Wise, hope you don't mind but I plagiarized a good bit of your letter.

  10. #10
    Senior Member kilgore's Avatar
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    Well, my email was bounced back because I didn't include a New Hampshire street address. Short of mail fraud, I can't think of a way to get through. I guess that's his intent.
    Go get 'em, New Hampshire CareCure members!

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