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

  1. #1

    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. #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.

  3. #3
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    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

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    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

  5. #5
    Senior Member mk99's Avatar
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    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...

  6. #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.]

  7. #7
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    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

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

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    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

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