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Thread: Clinical Trials Who to Contact for Public Funding (the sticky axon gets the grease)

  1. #1

    Clinical Trials Who to Contact for Public Funding (the sticky axon gets the grease)

    People to contact to request increased public funding for SCI clinical trials

    Obama Administration White House Office of Science and Technology Policy
    http://www.whitehouse.gov/administration/eop/ostp

    Dr. John Holden is Science Advisor



    National Institute of Health- National Institute of Neurologic Dsorders and Stroke (NINDS)
    http://www.ninds.nih.gov/find_people/ninds/index.htm

    Office of the Director (OD)
    Name
    Official Title
    Bldg/Room
    Phone
    Fax
    Story C. Landis, Ph.D.

    Director, NINDS

    31/8A52

    301-496-9746

    301-496-0296
    Walter J. Koroshetz, M.D.

    Deputy Director, NINDS

    31/8A52

    301-496-3167

    301-496-0296
    Joellen Harper Austin

    Associate Director for Management and Executive Officer

    31/8A52

    301-496-4697

    301-496-0296
    Maryann Sofranko

    Deputy Executive Officer

    31/8A52

    301-496-4697

    301-496-0296
    Alfred W. Gordon, Ph.D.

    Associate Director for Minority Health and Research

    NSC/2151

    301-496-3102

    301-594-5929


    National Advisory Neurological Disorders and Stroke council (NANDSC)

    http://www.ninds.nih.gov/find_people/nands/index.htm

    http://www.ninds.nih.gov/find_people/nands/index.htm Member Roster List

  2. #2
    Sample Letter

    Dear ________

    I am writing to request that more public funding be made available into embryonic stem cell and other potentially useful therapies, specifically clinical trials of these therapies, that will lead to an effective treatment for spinal cord injury.

    Currently, about 300,000 persons in the USA live with spinal cord injury, and about 12,000 new cases occur each year, primarily affecting young adults. The costs in human suffering and pain cannot be tallied. Each injury profoundly affects the person injured, their families and their communities.

    The lifetime costs of treating and living with SCI are astronomical. According to the Spinal Cord Injury Statistics Center, the overall lifetime estimated costs that are directly attributable to SCI vary greatly according to severity of injury but range from between almost 5 million to 1 million dollars per person. The indirect costs to society in terms of lost wages and productivity and incalculable.

    Spinal cord injury occurs in and affects everyone; however when comparing statistics of those injured between1973-1980 and those injured since 2005, SCI has roughly doubled in African-American and Hispanic populations.

    The recent advances in regenerative medicine, nervous tissue transplantation and embryonic stem cell therapies in tandem with a better understanding of the biology of repair and regeneration in the central and peripheral nervous systems have made very possible what once was a forlorn hope; ways to regrow functional nerve cells. This is an incredible medical advancement, yet the applications and possibilities of nerve cell regrowth that will lead to effective treatments for SCI are not being researched and investigated to the fullest extent. Embryonic stem cells in particular show incredible promise in clinical studies.

    It is incredibly unfair that more public funding is not available towards clinical trials for effectively treating SCI. A cure for SCI will not only profoundly affect those with SCI but will also have tremendous impact for virtually any disease or trauma that affects the central nervous system. The list is endless; stroke, traumatic brain injury, Parkinson’s disease, multiple sclerosis are just a few examples of the many disorders that will benefit from research that cures SCI by restoring function.

    Again, I request that more funding be made available towards clinical trials for a ‘cure’ for SCI, specifically effective treatments for SCI that focus on nerve regrowth and regeneration to restore function. It would profoundly affect the lives of not only those with SCI but millions of others. A cure is no longer a lost cause, it is now within our grasp. But it cannot be achieved unless the researchers that can make it happen have funding for clinical trials to take their findings out of the laboratory and into peoples’ lives.

    Sincerely,


  3. #3
    Senior Member Leo's Avatar
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    avictoria, thanks for putting this together
    http://justadollarplease.org/

    2010 SCINet Clinical Trial Support Squad Member

    "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

    .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

  4. #4
    Leo, thank you.

    It is my hope that members of this forum and their families will send emails and letters to these public officials specifically requesting clinical trial funding. If half the people here emailed or even better snail-mailed Obama's science advisor and the NINDS director, they'd be deluged with letters regarding the issue. The internet makes it easy to contact them, as well as every other elected official, and I hope the sample letter is useful for those folks that want to voice their opinion but might be a little uncertain how to compose such a letter. I hope folks here read it and improve on it and sign it and send it off!

  5. #5
    Thanks!

  6. #6
    Thank you Victoria. What is the consensus on the SCI population? I thought I recently read 1.2 million.

  7. #7
    Great letter, we should try the same in the UK and European countries and Australia.

  8. #8
    chaz, everybody

    I got the stats from https://www.nscisc.uab.edu/public_co...eb%20Final.pdf

    University of Alabama National SCI Statistical Center https://www.nscisc.uab.edu/

    figured they ought to relatively accurate if there's an entire department devoted to it.

    Gawd what a job! Can you imagine crunching numbers all day....then again I have to take my shoes off to count to 19. heh heh.

    Am so glad ya'all like the info and the sample letter. Let's give 'em hell.

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