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Thread: Cure Advocacy Organizations

  1. #1

    Cure Advocacy Organizations

    From Jeff http://carecure.org/forum/showthread.php?t=14481
    At least the researchers have formal organizations that give them structure and identity. We, the injured, have no one organizing us en masse the way some of the research coalitions do. We have no real goals of our own, no structure, no division of labor and little to unite us. If we spent half of the hours we spend here doing other things that make more of an impact we'd probably be in a better position, now. The closest thing we have is this web site. I only pray that our numbers will reach respectable levels and that some one or some thing will come along to organize us and bring out the potential we have.

    Once a cure is proven, I think we'll have more ammunition and more of us shooting. Once a cure is obvious things will change dramatically. We are still in the "hope" stage. It's too little to turn people on. No one wants to sponsor a bunch of us on Pennsylvania Ave. all demanding a cure. When it's obvious that relatively little federal funding is all that's required [$1B], maybe we can take to the streets.
    Jeff,

    Some historical perspective may help. There have long been organizations of people with spinal cord injury in the United States and Europe.

    National U.S. Organizations. The Paralyzed Veterans of America (PVA) was founded in 1946, along with the Eastern Paralyzed Veterans of American (EPVA). Among the first cure advocacy groups (that I know of) were the Spinal Cord Society in Minnesota (Chuck Carson) and the Paralysis Cure Research Foundation (PCRF). PCRF merged with the Kent Waldrep Foundation in the early 1980's and the Hank Stifel Foundation in 1985 to became the American Paralysis Association (APA), and is now the Christopher Reeve Paralysis Foundation (CRPF). At the present, there are at least three national spinal cord injury organizations: CPRF, The National Paralysis Foundation (Kent Waldrep), the National Spinal Cord Injury Association.

    Regional Foundations. There are numerous foundations, including the Danny Heumann Foundation, the Alan T. Brown Foundation, Mike Utley Foundation, Rick Hansen Institute, Help Them Walk Again Foundation in Las Vegas, the Paralysis Project of America in California, Foundation for Spinal Cord Injury Prevention Care and Cure, the Miami Project to Cure Paralysis, and many others. The Canadian Paraplegia Association has been active in Canada for decades. Some of these have spun off specific projects, such as the Quest for Cure which lobbies state governments for SCI research funding.

    Professional U.S. Organizations. The Dana Alliance was formed by prominent neuroscientists in the 1990's to educate the public and our government concerning the importance of neuroscience research. Likewise, a number of scientific organizations such as the Society for Neuroscience and the Federation of Societies of Experimental Biology (FASEB) have been active in Washington DC. The American Spinal Injury Association has a membership of some rehabilitation and surgeons who specialize in spinal cord injury and they are building a presence in Washington DC. Various orthopedic, rehabilitation, physical therapy, occupational therapy, and other groups likewise have been active in Washington DC.

    International Foundations. Several international and overseas organizations are very active, including the International Spinal Research Trust, The Spinal Research Fund of Australia, the International Campaign for Cure of SCI, and others.

    Most of these organizations do cooperate and work together. Almost all of them have "cure" as part of their mission although few have a presence in Washington DC. The PVA probably has one of the strongest and most effective voices in Washington DC on behalf of the legislation that benefit the spinal cord injury community. Although veteran benefits is their first priority, the PVA has been an important partner in most efforts to increase federal funding of spinal cord injury research as well as the state funding efforts. Of course, Christopher Reeve has been active in Washington DC as well. Finally, there are many ADA groups but most of these do not emphasize research as part of their lobbying effort.

    Wise.

  2. #2
    Senior Member Jeff's Avatar
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    ADA Organizations put us to shame

    I know the general disability community is vast compared to the SCI subset, but in terms of their passion translating into actual action they are much more visible.

    I live in Florida where so much is already being done to support SCI in one way or another that working toward state-sponsored research doesn't seem like much of an option for me.

    SCS members are often quite active in their efforts at the local level but it takes someone to get the ball rolling and start organizing events. I don't have that kind of time.

    CRPF reaches out in a modest way with their web site and newsletter but beyond informing and soliciting donations, little is done to organize us in any way.

    I'm just a little frustrated at what I see is the wasted potential of the few of us who care and the total waste of those SCI who aren't even in the loop. But, like I said, I'm expecting things to change dramatically when a chronic SCI gets on Sixty Minutes and tells how his incurable injury was cured abroad and that hundreds of thousands of us are needlessly wasting away in wheelchairs draining funds from society all because we were lax in funding research and clinical trials.

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

  3. #3
    Senior Member Jeff's Avatar
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    BTW, Thank you, Dr. Young

    We do have an impressive list of advocacy organizations. I'm thankful for all those people who had money or acquired funds to start foundations and trusts. A lot is being done within the community. I just see a big gap in organizing us all at the national, regional and local levels. Maybe with a nationwide registry we will get more of us involved. And when our hope becomes real, we'll all stand up to get things done.

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

  4. #4
    Super Moderator Sue Pendleton's Avatar
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    I am BACK!!

    As long as this patch job holds or the new computer arrives.

    Jeff, last year I heard of in Florida the SCI fund law there collected $15 million. Only $1 million went to research and the rest to services. A new, updated Quest For The Cure site should be up in about 2 weeks. You can then find your state people and help them pass laws. Until then you can do a lot on your own or with a friend or family to raise cash now. Bake sales at local hospitals---nurses and docs have major sweet tooths, raffel off something you can get donated. The Paralyzed Vets of Michigan got a Willy's Jeep donated. In the Fundraising Forum Patricia Morton gives her email and phone at the SCI Project. As long as you have a non-profit organization receiving the funds you raise it is not hard to raise hundreds to thousands of dollars.

    Florida...hmmm, howw about something for Spring Breakers like best legs on the beach? Entry ticket prices to go to research charity and have a beer or liquor company donate Tshirts and beach towels as minor prizes and maybe a trophy shop can donate a something cool for the winner...like a drinking cup with a wheelchair stand...

    It only takes one person to start especially smaller first efforts. A family near here raised $10,000 over a day for a girl with CP whose Father died in the Pentagon plane crash. It was a skate a thon and the coach at the rink helped her skate for the very first time. Her OT helped the family set up the event.

    So..take this over to the Fundraising Forum and start brainstormin with other Floridians. :-)

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