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

    How can individuals with private donations ensure the funds are going to the right scientist? I am bothered by how people swallow press releases and false claims, "hook, line and sinker." It seems to me that some neurologist are taking credit for a lot of things that are just not his/her to take credit for, "first time this, first time that," a lot of first" that are old news to anyone who has done a little checking.

    #2
    arturo, thanks... I have to run to a meeting now but I will try to answer later this evening. In the meantime, I would love to hear what others think. Wise.

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      #3
      I wish I knew--every time I donate I worry about it. I said about a year ago that I only donate to CRPF because they are the only ones I trust right now--hope I am correct about this. Being paralyzed already takes enough money from my family and donating just takes more, so I don't need anyone taking my money who's just gonna waste it ...

      EM
      EM

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        #4
        Trust

        It seems this has become quite prevalent in many of these national organizations. The Red Cross now, I believe, puts everything in their general fund because of the 9-11 problems. I recently interviewed an organization here in Arizona that is invoved with SCI. They refused to answer any questions regarding where specific funds go. They also wanted nothing to do with questions on cure research. Why not just publish a list of all the specific areas where the funds go? Maybe it is just to simple. Personally all my donations go directly to an individual in need, no groups!

        God Bless

        Arnie Fonseca, Jr.
        Neuro Institute

        Comment


          #5
          I only support projects like Will Ambler's. Something that has clearly defined goals, time limits & where the goal is to get people out of wheelchairs and not just basic research forever. The only bigger institution I would even THINK of donating money to would be Rutger's because I know Dr. Young wants to help us and not just have a great career and do golf tournaments at our expense.

          It'll be a cold day in hell when I donate $.01 to Miami Project.

          Good question though...
          "Oh yeah life goes on
          Long after the thrill of livin is gone"

          John Cougar Mellencamp

          Comment


            #6
            arturo,

            Let me try to answer your question generically first. When donating, it is important to determine not only the mission of the organization but the history of its use of funds. If an organization does not utilize the funds as expected, the most obvious recourse is to communicate this to the organization and not donate to that organization again. Most major fundraising or charitable organizations are anxious to get more donations and this is usually an effective tool for getting their attention and changing their behavior. It is, however, important for both donors and recipients to communicate their respective expectations clearly and to do so before donations are made or accepted. Unfortunately, donors often give based on certain expectations and recipients accept based on other expectations.

            Arnie mentions below that he gives only to individuals in need and not to organizations. I respect that view. However, if everybody gave only to individuals, we would not have charitable organizations that are capable of applying funds for larger and important projects. Arnie mentioned the Red Cross. This is a very old and venerable organization that has done much good in the past century. Unfortunately, the organization lost the trust of its donors in the aftermath of the 9/11 crisis. I would suggest that it is not time for the donors to stop giving to the Red Cross but rather it is time for the donors to work together to make the Red Cross regain that trust and achieve its mission better. It would be a shame if the Red Cross were damaged because of mismanagement of the trust.

            Let me try to answer your question from a more personal level. I believe that donors are partners. When somebody donates to our center, that person becomes a partner. I also believe that donations of knowledge and moral support are as or more important than money. Practice of these beliefs, however, is easier said than done. Until 1997, at NYU Medical Center, I did not have a means of communicating with the spinal cord injury community. I did not feel that our laboratory was ready for that partnership. At that time, 90% of our funding came from the NIH and 10% from private foundations and donors. Over the years, I had of course helped many organizations that raised money for spinal cord injury research, including the American Paralysis Association, the Kent Waldrep Foundation, the Daniel Heumann Fund, the Alan T. Brown Foundation, the Paralyzed Veterans of America, and many other charitable organizations that supported spinal cord injury research. From 1980-1997, I had received several grants from individuals. These individuals have become my closest friends and I hope that they agree that we have developed a level of trust that transcends politics. This approach, however, is difficult to achieve on a larger scale.

            When I came to Rutgers, I sought ways to communicate better with the community. As you know, I spend a great deal of time listening and trying to understand the people for whom our research is done. My colleague Patricia Morton spends many hours every day talking to families and people with spinal cord injury. We hold monthly "open houses" for people and families with spinal cord injury. Thousands of people have visited our Center in the last five years. I can honestly say that this input continually shapes our mission. But I quickly realized that partnership cannot be created and sustained without people understanding what spinal cord injury research is and our understanding what the community wants. That is one of the reasons why I spend so many hours on these forums, reading almost every posting.

            I am very concerned that the spinal cord injury community has not developed effective partnerships with its scientists. In my opinion, this is the single greatest obstacle to progress in the field.

            Wise.

            [This message was edited by Wise Young on Oct 02, 2002 at 09:57 AM.]

            Comment


              #7
              Honesty

              Dr. Young, I appreciate your honesty in your post. My question to those who are executives of these large organizations, why not just be open and honest with where the funds are going. If you are non-profit, what seems to be the problem with this approach. In this day of mis-trust it seems to be the only way to win back the trust of the average american. If you list in detail what or where the funds are going, then people can decide whether it would the best place for their money to go. As I said before, It seems simple, but why not?

              God Bless

              Arnie Fonseca, Jr.
              Neuro Institute

              Comment


                #8
                Arnie, I don't understand why the organization that you are referring to is not saying what they are using the money to fund. The answer seems to be simple. If a foundation won't say what they do with the money, people should not donate. Wise.

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                  #9
                  ask to see the financials and if they are audited by a reputable 3rd party.

                  Comment


                    #10
                    License Plate Funding

                    Hi, In Tennessee and probably other states the state legislature will authorise specialty plates to colleges, groups and charities in place of regular plates. The plates must represent a group. I would like to get a "SCI" license plate started for Tennessee, the problem is who would get the money from the plate sales? I need your help to get this project rolling. The state legislature can be reached through the state web site at www.state.tn.us

                    Comment


                      #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.

                      Comment


                        #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.

                        Comment


                          #13
                          i say we grab some guns and copy that movie 'john Q'.

                          Comment


                            #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.]

                            Comment


                              #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.]

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