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Thread: How one can assure that donated funds are used appropriately in research?

  1. #11
    Stude911, there is a group called the Quest for Cure which has successfully lobbied nearly 20 states to pass legislation to support spinal cord injury research from various sources. It is estimated that the state support of spinal cord injury research may be reaching $38 million per year by next year. In any case, if you want to join the group, please email Patricia Morton intdevel@juno.com for more information. I am not sure but I think that there is a quest group in Tennessee.

    By the way, it is critical that people and families with spinal cord injury become involved in these state funding efforts, not only to get the legislation passed, but to serve on the commissions and to ensure that the funds are spent appropriately.

    Wise.

  2. #12

    Dear All,

    Some of the discussions on this topic have been very fruitful and interesting.
    What research organizations should the SCI donate to and why? I would like to hear different viewpoints from the members on this forum. There are many people on this forum with emotional and strong opinions where funds should be donated.

    Dr. Young, Can you think of an appropriate topic to post?

    Please note: I am not interested in hearing about Activity-Based Recovery Program or rehabilitation equipment. Please keep the topic on treatment for the SCI.

  3. #13
    Senior Member DA's Avatar
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    i say we grab some guns and copy that movie 'john Q'.

  4. #14
    Arturo,

    There is presently a diversity of choices for donors. They can donate to the Christopher Reeve Paralysis Foundation and know that they are contributing to support grants that are peer-reviewed by world-class scientists and that some of the money will also go to quality of life and lobbying efforts to convince the government to cough up more funds for spinal cord injury research. They can give to the Kent Waldrep Foundation and know that they will be supporting research in Texas and fostering collaboration by spinal cord injury researchers around the world. They can give to the Miami Project and know that they will be supporting a group that is led by Marc Buonicanti and his father who have every motivation to develop curative therapies for spinal cord injury. They can give to the Paralyzed Veterans of America (PVA) which has a Spinal Cord Research Foundation that funds a variety of rehabilitative and other spinal cord injury research. They can give to the Spinal Cord Society, headed by Chuck Carson, who decides what to fund. Or, they can give to individual universities and centers that are doing research on the subject.

    Perhaps the best example of a knowledgeable donor that I know is Werner Heumann. The father of a man with spinal cord injury, Werner personally visited the laboratory of every major researcher in the field, went to all the major meetings so that he could understand the research, judged the ability and integrity of the researchers, and then invested his money. In 1986, he came to my laboratory with his wife. A check came later for $40,000 to buy a microscope that we have used for over 15 years to study spinal cord injury. In my opinion, this single investment resulted in many dozens of papers that have shaped the field of spinal cord injury, including the discovery that very few axons are required for functional recovery, that demyelination occurs in spinal cord injury, and that L1 stimulates regeneration in the spinal cord. He came back every year to find out what is going on and how he could help. We became very good friends. Unfortunately, he died several years ago and did not see the flowering of the field that has occurred in the past three years. Werner invested in the Miami Project, gave Xao Ming Xu the crucial funding that he needed to develop the Schwann cell bridging experiemnts with Mary Bunge, to Michal Schwartz and Melitta Schachner, to Jerry Silver's laboratory, and many others. He raised money from friends and family. He planned his vacations around trips to major spinal cord injury centers and meetings. The Heumann foundation funds the phone calls that made Quest for Cure possible, an effort that is now yielding over $30 million per year of state funding for spinal cord injury research. In total, the Heumann Foundation gave about $2.5 million over 17 years to about 100 laboratories and organizations. In his own quiet way, he laid the groundwork for the current renaissance of spinal cord injury research. To me, Werner Heumann was like a Warren Buffet of spinal cord injury research.

    Look at Christopher Reeve and what he did after his injury. Contrary to popular belief, I don't think that Christopher was a very wealthy man at the time of his injury. Whatever wealth he may have had quickly evaporated after his injury because he could no longer work as an actor, at least in the beginning. But, within weeks after his injury, he determined that his goal was to stimulate spinal cord injury research to undertake the task of curative therapies. He took over the American Paralysis Association, breathed new life into that organization, and lobbied his friends to support spinal cord injury research. He travelled incessantly to support spinal cord injury research, lobbied the government, wrote his books and directed movies, and did what he could as an individual to bring the case of "cure" to the public. I don't know how much money he has raised for the field but it must surely be in the hundreds of millions during the last seven years. But his real gift to the field, in my opinion, was motivating scientists and daring them to go for the cure. He did all this despite a C1 injury that left him ventilator-dependent. He managed to do this, provide for his family, and work hard at recovery.

    Look at Nick and Marc Buonicanti. Yes, Nick was wealthy and well-known but not of the magnitude that would allow him to fund the Miami Project by himself. I was just at the 17th Sports Legend Banquet at the Waldorf Hotel. It raised $2 million but far more impressive was the number of sports figures who came to lift a glass and to support spinal cord injury research. They did not need to do this. Marc has now spent 17 years of his life pushing for spinal cord injury research. They have created the first major spinal cord injury center in the world, dedicated to cure. I not only want to applaud them for their achievements and contributions to the field but their perseverance. They started when there was no hope, no money, and no major donors. They brought credibility to the field, credibility that allowed other researchers to join. Without the Miami Project, in my opinion, we would still not be considered a legitimate field of research.

    Look at Kent Waldrep who was injured in 1974, in an age when recovery was not only thought to be impossible but any claim of recovery was believed to be fraudulent. He was a college football player whose career was ended by his injury. Over the past 25 years, Kent has raised $100's of millions of dollars for spinal cord injury research. He was the only person in the spinal cord injury community who gave moral and financial support to acute spinal cord injury research. In fact, he gave me my start in the field with my first grant in 1979. He founded the American Paralysis Association, funded both the National and International Neurotrauma Societies that brought brain and spinal cord injury scientists and clinicians together for the last 10 years, and worked behind the scenes to ensure that the field did not collapse under the weight of its squabbling. His wry sense of humor has saved many a relationship and meeting. He is the major reason why the field of spinal cord injury is as collaborative as it is.

    Each person must develop their own style and decide what they want to do to help the field. I want to emphasize that people do not have to donate money to contribute to the field. Scientists are people. Like all people, they are motivated by other people. The greatest donation that a person can give is not money but motivation. People should not hesitate to go visit and contact scientists because they don't have large sums of money to give. Peopel should go so that scientists can meet the people for whom they are doing the research. It makes a real difference. For those with money, donating well requires dedication, patience, and skill, as well as an ability to take risks. It is not unlike investing. One can either invest in a mutual fund or build one's own portfolio. For those who don't have the time or the inclination, giving to one of the larger organizations that fund a lot of research may be the answer. It is like putting your money in a mutual fund. For those who care to, investing in a few well-chosen institutions may yield more bang for the buck.

    Wise.

    [This message was edited by Wise Young on Oct 05, 2002 at 02:05 PM.]

  5. #15
    Great post Dr.Young,

    Lots of interesting information & many good points made.
    After re-reading your post, I have come to the conclusion (for myself anyway) that this is one of the most interesting posts I have read on this forum in a while. I especially enjoyed the story about the microscope and how it led to such a large discovery. Thanks for taking the time to share that.

    [This message was edited by chasb on Oct 05, 2002 at 03:34 PM.]

  6. #16

    Dr. Young,

    Thank you for your contribution! I wish that I could have stated the points that you made so eloquently as you did!! My only comment is: Many prominent neuroscientists have different beliefs in the type of treatment that will be the most beneficial and practical for the SCI. You're right...each person must develop their own style and decide what they want to do to help the field.

  7. #17
    Well said Dr. Young. Very enlightening, thanks for emphasizing the different avenues of support.

  8. #18
    Senior Member bill j.'s Avatar
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    Good discussion. I wrote the following before reading much of it. Guess I will leave what I wrote as is for now. I liked what Wise said.

    ##########

    Arturo, I've been thinking about your question. Where would I make a contribution - especially if it were a large one? This question has come up before on other forums.

    First, I think trying to find the research center doing the "best" work is nearly impossible. Who knows what is "best" research? The best, of course, is the one I think will come up with a cure. Which therapy being researched will produce cure? That is the one I want to finance!

    But which therapy is it? It is sort of like trying to pick the winner of a lottery.

    Right now, OEG therapy seems to be the "hot" area. An even hotter area might be OEG and stem cell combination. But I think that even at this point, crowning OEGs as the "winner" is vastly premature. But I still find myself praying that the results from OEG clinical trials in China and Portugal will be so outstanding that no one can deny the efficacy of the therapy.

    Martin Schwab's group is a contender. And I haven't heard much about Sam David's vaccine lately, or the clinical trials with electrical stimulation at Purdue, both of which might make a contribution to a cure. And what about Macrophage therapy? If one of the above proves to cause improvement, what would happen if you combined OEG treatment with them? Or inosine? I am getting confused as I write. The possible combinations probably number in the hundreds.

    I think the best research projects are ones that are exploring a variety of possible cures and are ones that keep an open mind to what other research labs are doing and the progress they are making. I think the Miami Project referred to this in a recent email as "Parallel" approaches and Wise has said it is important to have many different irons in the fire, not that each lab has the resources to put all of the irons in the fire. The best ones also collaborate with other centers because I think this whole effort of producing a cure will not come completely from only one lab or one scientist or from one idea.

    Now I know there are many here who do not like the Miami Project so I say this with some risk of being flamed, but I think the cure research part of the project is probably very good. We are all now following OEG research very closely, but Miami and Dr. Cueto were doing OED research long before we even started to hear about it.

    I also follow somewhat the work being done at Boston Life Science with Inosine. That companies scientists are mostly affiliated with Harvard, I believe.

    I also think the Rutgers Spinal Cord Project would be a candidate for a donation. I know of no one more passionate about finding a cure than Wise Young, although I am sure many scientists are. His lab takes time and effort to replicate results from other labs (most scientists don't like to do this but this druge work is very necessary) and his lab has trained scientists to do SCI research. I believe Dr. Cheng, who is doing OEG transplants in China, trained at the Rutgers lab. And I know how open Wise is to collaboration.

    I also like the work being done be Hans Kierstad at the Reeve-Irvine Center at the USC. I think (at least I heard through the grapevine) that Dr. Kierstad has formed a company to find funding and accelerate his work with OEGs and stem cells. I have a friend, Fran Lopes, who knows Hans and raises money for the Reeve-Irvine lab. Hans is very excited about his work and progress, according to Fran.

    Anyway, I think there are many centers doing ggod research - and many more that I have not listed here. Some need money and some don't. I once contacted the Schwab group about their need for money and got the response that with their Norvatis sponership, money was not a big problem for them.

    If I were making a large donation, I would interview scientists and know exactly how the money was to be used and ask for updates of progress. For example, if donating to the Miami Project, I would not like my donation being used for rehabilitaiton research but only for cure research. I would also like to know if the center I donated to was open minded enough to consider trying combination therapies using results from other labs.

    Usually when this question comes up, there are many that claim the Spinal Cord Society run by Charles Carson is the place to give money because Mr. Carson is so dedicated to finding a cure. The SCS has set up a new lab in Colorado devoted only to spinal research. Dr. Carson (who has a degree in geology, not medicine) is outspoken and calls a spade a spade. I do not always agree with his viewpoints, especially his criticisms of CR. But you always know where he stands. He does not give you a bunch of political goobledegook.

    Well, these are just some of my thoughts. Bill

  9. #19
    Bill, before Henreich Cheng starts sending email to me... let me say that he trained with Lars Olson in Sweden. Dr. Hongyun Huang who is doing OEG transplants right now in Beijing trained at our Center. Don't worry about the mistake. Wise.

  10. #20
    I've made large donations for embryonic stem cell research. From now on... I would try like hell to make sure my goals were the actual goals of whoever might get my money. And I'd try like hell to understand the research involved, including it's roadblocks to clinical usage (including technical and regulatory issues), the nature of its possible benefits, and the exact needs of my condition (or the condition I wanted to improve through my donation). Without a crystal clear knowledge of all these factors and how they relate, anything else is a shot in the dark. It sounds like OEG and a stem cell combination might be a "hot" area.

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