Scleroderma Information » Scleroderma » SD orgs – was What to read?
Question:
Yes, the United Scleroderma Foundation and the Scleroderma Federation do pool their research money. A Medical Advisory Board of SD doctors around the country review promising proposals and decide which ones to fund. There is also peer review. USF and the SF are similar organizations with a threefold mission — patient support, education and research funding. The Scleroderma Research Foundation, the third of the three organizations, has a different approach to research. I’m not as well versed in this, but I believe their approach is to send its money to specific "SD centers" such as Stamford and Johns-Hopkins, to name a couple of them. These are the three groups recognized as the "official" SD organizations by the medical community, etc. All are legitimate and very worthy. I’m not saying others aren’t legitimate or worthy, but I don’t know about them. SRF is different from the others, too, because they do not have patient support services (chapters, support groups, etc.). Their single goal is research. I try to support all three with donations, but mostly USF because I am on their board and most familiar with its programs. As I’ve said before, I agree one organization would be in the best interests of those of us who suffer from SD. Three organizations certainly are confusing, and many efforts are duplicated.
Response:
- Hide quoted text — Show quoted text -rmeiz…@carroll.com wrote: > In <19961204023300.VAA20…@ladder01.news.aol.com>, rsm…@aol.com writes: > >There has been some reorganization within both the USF and SF, which is > >one of the reasons talks about consolidation have been "on hold." The > >executive director of USF and the president of SF are talking now about > >setting a date for our next meeting. > What would be the benifits of merging ? > If the two orgs. are following different courses of research, > and one course would be eliminated by the merger, > perhaps separate is better ? > -BOBm > >>My Posts and Opinions are My Own<<
I think the two orgs (SF and USF) pool their research money. Perhaps Ronni can confirm this. I think having three groups is very confusing for the newly diagnosed. Between the local affiliates of USF and SF and SRF I was quite mixed up about it for several years. And I think for fundraising it would be easier if everyone knew there was one group to give to. Many people are suspicious of charities today, and they can’t be expected to keep track of several different organizations with almost identical names. I believe there is now a group that is pushing DMSO as a cure that has a name similar to the others. I often get emails from people asking if one or another of the groups is on the level, or is to be trusted, or asking "which group is the real group?" Kate Nance Upper Black Eddy, Pennsylvania Email: kna…@epix.net I HAVE SCLERODERMA http://www.epix.net/~knance/ Visit our newsgroup: alt.support.scleroderma
Response:
[...] – Hide quoted text — Show quoted text -> > What would be the benefits of merging ? > > If the two orgs. are following different courses of research, > > and one course would be eliminated by the merger, > > perhaps separate is better ? > > -BOBm [...] > I think the two orgs (SF and USF) pool their research money. Perhaps > Ronni can confirm this. [...] > Many people are suspicious of charities today[...] > I often get emails from people asking if one or another of the groups is > on the level, or is to be trusted, or asking "which group is the real > group?" > Kate Nance
I believe that the best is to donate the money DIRECTLY to the doctor that is doing the research that you want to support. In these times of widespread communication, patients can easily determine which kind of research they want to fund, or who they want to fund. Unfortunately, money that is donated even to Foundations, may not reach the doctor who is needing it to buy supplies for the "bench research". From pipettes, to buffers, to equipment, biomedical research requires constant cash reserves. Any donation, even of $10.00, is very useful in active labs. The way the Foundations assign the money to particular doctors is by having a multi step process. 1. Researchers write a complete research proposal (usually 10-25 pages); 2. The proposal is reviewed by a committee of doctors appointed by the Federation who understand the science behind the proposal. They score each proposal; 3. The Federation evaluates other non scientific aspects of the proposal. Thus, the final decision of who gets the money depends on many factors. I know that some very good proposals have received outstanding scores, and not been funded by the SF. I believe it is best to give your money directly to the doctor that you know is doing research in scleroderma, and who you know is committed to it. ——————-==== Posted via Deja News ====———————– http://www.dejanews.com/ Search, Read, Post to Usenet
no comment untill now