Hello All!
I'm sorry that I couldn't respond to questions earlier today. Ironically, I've been completely bogged down with a specific task related to our current research grant cycle -- a task involving deadlines. That task is finally completed--for now!
You've asked several questions and raised seriously valid issues. As I mentioned to Daveman and demografx in an email a week or two ago, the "world" of research grants is sort of like visiting a foreign county where you don't speak the language -- but only at first.
Usually, individuals or groups who wish to set up a research fund at NORD for the first time ask some initial questions, receive answers, and then more questions come up -- for months sometimes. This is usually accompanied by major anxiety about entrusting these hard-won funds to the wrong place -- the anxiety can be sensed from our side, even without it being expressed. Then, there is the major issue of our MAC ultimately making the grant award determination independently (i.e. how will they choose the best researcher/project for our needs when there is barely any research on it in the first place?) Also, there is always a worry (not on our part--on the part of the donors) that we'll choose a "pinhead."
Here are some comments and answers that I hope will clarify some of this--
B_Daniel -- thank you for expressing your confidence in our research grant program!
You asked how many of the 150 administered seed grants that we've administered over the years have left the donors unhappy about the outcome or the way the research was performed. The answer is unequivocally "NONE."
We have several groups who repeatedly have us administer their grants -- one group has actually advised that they want to utilize NORD's grant program for the next few years, at the least. They would like to have their own grant program, but realize that their disorder is RARE -- and many of their own medical advisory committee would want to apply. There would be no one left to review and determine the award recipients!
(2) There have been a few grants awarded (usually for rare forms of cancer) where the study looked at the use of specific drug combinations for treatment. If the study ultimately shows that these drugs did not work, there is always great disappointment for everyone (honestly -- the researcher is usually the most upset!). However, these types of studies in humans are extremely important. It's critical to know that something does not work, and to move on from there.
(3) We have one family, in particular, whose child has a very rare chromosome disorder. They have given thousands to NORD for research, and we did find some great researchers. One researcher -- probably one of the best in her field of chromosome abnormalities, produced a "mouse model" to further study the disorder.
However, we were unable to find a topnotch researcher the last time we posted their grant (last year) -- because chromosomes can't be fixed (think "Down's syndrome, which is a chromosome disorder--there is an extra pair of chromosomes that cannot be "removed") and there are very few researchers interested in conducting research on these rare chromosomal abnormalities that can't be treated or cured.
That family is still sending us funding - - they are hoping to collect enough funds to possibly start a registry and a clinic for that disorder, with NORD's help.
(4) Regarding anonymity of the donors -- this anonymity actually goes without saying! No one -- Absolutely no one aside from NORD's accounting department, me--and possibly our organization membership director (she would want to invite your group to become a NORD member org ---that would be the reason for her knowing about any group donations -- you can feel 100% free to not do so!) would be advised about who is donating research funds.
You could inquire about the total amount in your fund (or any of the other funds) at any time. That information is available to the public. But we could not advise any of you about the amount of individual donations to your fund.
To donate online, you obviously need to supply your name and credit card number -- this information is held in the strictest confidence by our accounting department. If you wanted to mail in a check and have it be anonymous , you'd need to send a brief note advising that the check is for the POIS research fund, and that the donation is anonymous (a bank check would do that).
As a non-profit organization, we always send an acknowledgment to the donor for his/her tax records (a note via postal mail) -- but if you don't want to receive that acknowledgment - - just advise in the note.
(5) Once the money is received at NORD for your fund, it is not returned (at least, this has never happened in the past, nor has there ever been a request for this that I'm aware of). So you must give this question careful consideration. (There may be a chance that the funds could be returned, but I've never seen it done, so would rather err on the side of caution here.) Assume the answer to be, "No."
Daveman-- the RFP would definitely need to meet the group's approval, but -- the money would stay at NORD. We would make that RFP work for you.
(I HATE to advise that the money stays at NORD, but it is true as far as I know--and I don't want to steer any of you incorrectly.)
Vandomelen and Vincent Marcus -- I think you both mentioned funding Dr. Waldinger's directly (aside from also funding NORD).
I am going out on a limb here, as Dr. Waldinger may read these posts. This comment of mine is not about HIM, so is not meant to offend him or anyone -- but it is about funding individual researchers and precautions.
Make sure you have a contract signed by the researcher, in which you spell out exactly how the funds are to be spent. Also, the funding should be given out as needed (not all at once), with reports back to you about expenses, progress, etc. Those expense reports need to be formally provided by the researcher's medical insititution.
Just passing some words of wisdom to all of you -- based on experience. :-)
If I've missed anyone--don't take it personally! Ask the question again.