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History of SCI Organizations (1986) that I wrote

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    History of SCI Organizations (1986) that I wrote

    I wrote this little blurb a number of years ago in 1996 and found it recently posted on site.

    A brief history of SCI organizations 1975-1996

    by Dr. Wise Young
    January 18, 1996

    The following is a very brief history of some scientific, clinical, and private sector organizations interested in spinal cord injury research in the last two decades. During this period, the whole field changed. In 1975, if a researcher ventured the hope that treatments are possible for spinal cord injury (SCI), she would often be met with stony silence or perhaps even laughter at major national meetings. Most scientific, clinical, or private organizations at the time dared not discuss the concept of cure or even effective therapies for spinal cord injury. In 1995, most scientists and clinicians believe that effective treatments are not only possible but likely to be achievable within a decade or less if the field is provided with sufficient resources.

    Scientific Organizations.
    The Society for Neuroscience is the major professional organization to which most neuroscience researchers belong. In 1980, the Society for Neuroscience did not recognize SCI research as a legitimate entity and usually assigned posters and abstract presentations to either "miscellaneous" or "somatosensory systems" categories. There was simply no forum for SCI researchers. We had no journal.
    In 1981, a dozen frustrated SCI researchers arranged to meet privately the weekend before the Society for Neuroscience, starting a group that eventually became the Neurotrauma Society in 1988. Today, the Neurotrauma Society has about 500 members, including most of the active spinal and head injury researchers in the United States. It has its own journal (the Journal of Neurotrauma) and the fifteenth annual Neurotrauma meeting will be held at the Society for Neuroscience in San Diego this November and more than 400 participants are expected.
    In 1991, the first international neurotrauma symposium was held in Fukushima, Japan (bringing neurotrauma research to Japan and Asia); subsequent meetings were held in Glasgow (1993) and Toronto (1995), the next meeting is slated for Seoul in 1997. The International Neurotrauma Society (INTS) was formed this year to support the biannual international meetings; the Toronto INTS meetings was attended by 800 participants from all over the world. Before these societies, acute SCI researchers seldom spoke to regeneration scientists, scientists investigating head injury didn't know what was going on in the spinal cord injury field, and vice versa. These societies brought the scientists together and collaborative relationships are flourishing between laboratories. We have come a long way.

    Clinical Organizations
    Professionals who specialized in spinal cord injury were also banding together. The first professional spinal cord injury organization is probably the International Medical Society of Paraplegia (IMSOP) which began in England and has held annual meetings since the 1960's, all around the world.
    In the United States, the American Spinal Injury Association (ASIA) formed in the early 1980's and is composed mostly of physiatrists and orthopedic surgeons. The joint AANS/CNS trauma section emerged at about the same time, consisting of neurosurgeons from the two major national neurosurgical organizations holding annual meetings to talk about surgery of the spine.
    The Cervical Spine Research Society (CSRS) was formed by neurosurgeons and orthopedic surgeons who specialized in the cervical spinal cord.
    The American Paraplegia Society (APS) emphasizes rehabilitation, urology, and other affiliated specialties. Many other countries now have versions of such organizations, including the Japan Paraplegia Society, the Korean Neurotrauma Society, etc.
    The International Spinal Monitoring Society started in 1979 for clinicians interested in monitoring and protecting the spinal cord, meeting biannually (most recently in New York City).

    Early Private Sector Organizations
    In 1980, I remember participating in activities organized by the Paralyzed Veterans of America (PVA), the Spinal Cord Society (SCS), the Paralysis Cure Research (PCR), and the Help Them Walk Again Foundation. The PVA was concerned mostly with veteran rights, access, and lobbying. The SCS was then a young grass-roots Minneapolis-based organization organized by Chuck Carson and just beginning to fund some research [more to be added about the Spinal Cord Society]. The PCR is a Washington DC based group formed by a small group of spinal-injured people to fund research. The Help Them Walk Again group was a patient advocacy group based in Las Vegas and held one of the first major scientific meeting on the spinal cord injury that I attended in 1979.
    [by D.W.][The Spinal Cord Society has produced a littany of achievements in the field of cure-oriented spinal cord injury research -- its founder, Dr. Charles Carson, was cited in the State of the Union Address by President Reagan as one of the Nation's unsung heros -- as having dedicated countless hours (often 80 or more each and every week) voluntarily toward the cause of curing spinal cord injury. SCS has funded many key research projects. Perhaps most notable of SCS projects was the computerized walking demonstrations featured repeatedly on 60 Minutes. SCS also publishes a one-of-its-kind monthly international newsletter focused on cure-oriented research. Lastly, SCS is a grassroots organization of highly dedicated persons. For more info.. please call 218-739-5252].
    One of the very first spinal cord injury foundations was formed by Trink Gardner who had a spinal-injured husband; she funded the Bermuda Conferences on Spinal Cord Injury Research in the 1970's and endowed the Wakeman Award, the longest running (given biannually since 1972) and most prestigious award in neuroscience for research relating to spinal cord injury.
    Overseas, the International Spinal Research Trust Fund (ISRT) began in the early 1980's in England and now has active chapters in France, Switzerland, and Australia.

    Numerous Private Foundations
    I estimate that there are now at least 40 private foundations supporting spinal cord injury research in North America alone.
    Early groups included the Kent Waldrep Foundation and the Steven J. Camhi Fund. The Marc Buonocanti Foundation and the Miami Project started in the late 1980's, resulting in a world-class center specializing in SCI research; in 1990, the Miami Project recruited Dick and Mary Bunge from the Washington University to Miami and the group is now one of the leading laboratories working on SCI.
    Local foundations have formed in almost every state. The National Spinal Cord Injury Association (NSCIA) came into being in the late 1980's and has been a strong advocate of care issues in SCI. In New York City, the Daniel Heumann Fund and the Alan T. Brown Foundation started to fund research in the late 1980's. The Ameritec Foundation (Tom and Beatrice Hollfelder) from California started giving annual awards for spinal cord injury research.
    Several foundations are prominent in Canada and Europe. In Canada, these include the Canadian Paraplegia Association (CPA), the Canadian Spinal Research Organization (CSRO), and the Rick Hansen Man-in-Motion Foundation. In England, there is the International Spinal Research Trust (ISRT) with branches in several other countries, including the Australasia Spinal Research Trust (ASRT). There are several foundations in Switzerland, as well.
    Several attempts to meld these groups have failed. In 1987,the PVA formed the National Council for Spinal Cord Injury Associations (NCSCIA) but this group never quite got their act together and squabbling over funding made this group largely ineffective for years. In 1993, Arthur Ullian (a quadriplegic) was elected President of NCSCIA and began to re-orient the mission of NCSCIA towards lobbying of Congress for more federal funding of spinal cord injury research. Realizing that we need to push all of neurological research rather than just SCI research, Arthur formed The National Coalition to End Neurological Disorders (END) to complement NCSCIA activities. Working quietly behind the scenes and with educational groups like the Dana Alliance, END has met with many members of Congress and the White House. END and the Paralyzed Veterans of America are the most effective lobbying organizations on behalf of spinal cord injury and neurological research in Washington DC.

    The American Paralysis Association
    The APA emerged out of the original PCR group in 1981. Supported initially by David Camhi and Kent Waldrep, the first large grant made by the APA was to NYU Medical Center. A three-year grant made possible the experiments leading to methylprednisolone treatment of acute spinal cord injury, recruited Dr Andrew Blight (who developed the 4AP therapy for demyelination in chronic spinal cord injury), and supported Dr. John Gruner (who helped develop the NYU Impactor, the now standard rat spinal cord injury model in the field).
    By 1983, Kent Waldrep became President of the APA with Admiral Dick M.D. Van Orden as the Director of Research. Supported by David Camhi, Hank Stifel, Joe/Michelle Alioto, and others, the APA awarded small research grants to 5-10 researchers per year and supported many scientific meetings. In 1985, the APA ran into money problems and was taken over by the Henry Stifel Foundation (Hank and Charlotte Stifel). Kent Waldrep left to form the National Paralysis Foundation (NPF) in Dallas. The Aliotos formed the National Paralysis Project in California.
    The APA continued to fund many SCI research projects in the United States and overseas, giving out $30,000 (seed money for young investigators) and $60,000 (established investigator awards) grants. Over the years, the APA has seeded over 150 young investigators and has brought dozens of senior researchers into the field (including Martin Schwab, Eric Shooter, Carl Cotman, Rusty Gage, Ira Black, and others).
    APA funds research based on rigorous scientific peer review and its scientific advisory board is considered the best in the field.

    The Alliance and Consortium
    In 1994, Kent Waldrep joined the APA to establish an alliance with the aim of funding a consortium approach to spinal cord injury research. The NPF and APA merged scientific advisory boards, including representatives from the Miami Project. The Alliance refers to the group of organizations banding together to fund science.
    The Consortium itself is composed of seven leading laboratories working together to develop new therapies for chronic spinal cord injury. The headquarters of the Alliance and Consortium are situated at the APA. Strongly pushed by Mitch Stoller (the current President of the APA), masterminded by Susan Howley (Research Director of the APA), and strongly supported by the APA Board of Directors, the Consortium has begun its work. It is a first. The aim of the consortium is to get disparate laboratories to work closely together. A prestigious oversight committee watches the activities of the Consortium and advises the Alliance.
    The laboratories of the Consortium include the top researchers in molecular, cellular, systems, and applied sciences, carefully selected for their technologies and their commitment to spinal cord injury therapies.
    Limited space and memory does not allow adequate credit to many who have contributed but I hope that this helps answer your question. The history of the private sector side of the field will require a book to recount. There are many unsung heroes, like Charles Carson, Sam Maddox, Greg Winget, Ron Cohen, Benjamin Reeve, Shawn Friedkin, Ray Wickson, Larry Johnson, Lisa Hudgins, Peter Banyard, Margaret Brown, Marilyn Spivak, Bob Yant, Mary Ann Liebert, Vivian Smith, Cheryl Chanaud, Lesley Hudson, Walter Schafer, George Zitnay, Vivian Beyda, Tim Hanlin, David Mahoney, Gayle Stevenson, and many other people who have toiled beyond the call of duty to support the field.
    Several celebrities have contributed their time and hearts: Barbara Walters, Katie Couric, Diane Sawyers, Bill Utley, and of course Christopher Reeve. There have been many people from within the government who have helped the groups with advice and support, i.e. Murray Goldstein, Margaret Giannini, David Gray, Doug Walgren, and others. Many many scientists and clinicians have given unstintingly of their time to advise and raise funds for the organizations. And, I have not even mentioned the industry side of the equation.

    Very interesting, Wise. Thanks for posting.

    Please submit your photo and story of hope:


      thnx Wise

      "All you have to decide is what to do with the time that is given you."
      Gandolf the Gray

      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."


        Jeez, Wise, how do you keep track of all that?! As a postscript, I recall a think-tank that we (PCR) sponsored in 1979 (I think), in the Virginia countryside, attended by a dozen-or-so leading researchers in various fields relating to SCI from around the world. Did you attend that event? I recall Harry Demopolous and Jerry Petrofsky (computerized walking on 60-Minutes to which you referred) being there. In those "very early" days, I was also actively trying to raise capital for Drs. Harry Goldsmith for his work in omentum transplantation, Eric Naftchi at NYU and Stan Jacob for his research involving DMSO in Portland.
        Rick Goldstein
        GO! Mobility Solutions