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Rick

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RRDi required

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  1. Brady, This thread has raised two basic issues: - what is the funding model of RRDi? - what specific research related to rosacea should be funded? While the second is perhaps more fun to debate, it is a bit moot without a clear picture of the former. So far, I have detected several proposed models implied in this discussion: (1) RRDi operates much like NRS or RRF in that it raises funds from individuals and companies, and funds research grants submitted by outside researchers, with funding decisions and priorities set by the RRDi MAC and Board (2) RRDi uses its volunteer "grant writers" to submit proposals to some outside agency, and conducts the proposed research, using third-party funding, under its own auspices (3) RRDi acts kind of as a "clearinghouse" for rosacea research, bringing together potential funding agencies (e.g the Australia Meat and Livestock group) with potential principal investigators (e.g. R. Smith etal) to address rosacea-related research (e.g. the relationship between diet and rosacea). My understanding is that (1) is the dominant model. If this is the case, then your "grant writers" need to focus on raising funds, not writing grants, since you need a minimum of 25K (ala NRS) to attract any reasonable proposals. First step then would be to speak to David Pascoe and other RRF officers/alumni to understand how they raised $18K during their relatively short tenure. You also need to figure out how it is that the NRS raises enough money to fund on the order of $100K worth of grants annually. Once you have some funds, then you can solicit proposals, evaluate them via MAC expertise, and make decisions. I am not sure that you are in a position to pursue model (2) at this point. And model (3) is an option, but one wonders what value-add RRDi is providing in this model. Listen, I greatly admire your initiative to get RRDi started, and attract such a notable MAC. But you need to provide reasonable differentiation between RRDi and NRS. It is not enough to argue that (a) RRDi is run by rosaceans unlike NRS ( RRDi has an accessable MAC, and NRS does not © NRS has a broken financial model, with unacceptable administrative overhead that funnels too little money to actual rosacea research (d) NRS does not fund relevant or leading-edge research in rosacea With respect to (, I have corresponded privately with several members of the NRS medical board, and found them to be surprisingly resposnive and open to suggestions. With respect to ©, please see Sam Huff's letter at http://www.rosacea-research.org/pdfs/NRSThankYou.pdf. Please note that every single dollar donated by individuals since the grants program began in 1999 has gone to rosacea research. And if one gives $1000 to the NRS, then $1000 is immediately available to fund research because they have the remaining $24K to reach the required critical mass of $25K. Frankly, you need to provide a stronger motivation for participation via RRDi over NRS. You and I differ on (d). I do not necessarily support 100% of their funding decisions, but overall, I think Jonathan Wilkin and their advisory board have done a very respectable job. It is encumbent on all of us to share our own views of research priorities with them -- so far, I see no evidence that they do not welcome outside technical discussion. The bottom line is you need to focus on nuts-and-bolts marketing: raising funds, both from individuals and corporations, and providing differentiation of the RRDi funding model relative to NRS. Again, I commend you, the other officers, and the MAC or your efforts -- and I hope you are successful in the long term. Rick
  2. Brady, Thanks for the update -- I understand that this is a preliminary action. But I feel obligated to extend the arguments that Tricia made. The RRDi logo is "Finding the Cure". I fail to see how pursuing a connection between diet and rosacea addresses this broad objective. No cure can be found until the underlying mechanisms of flushing and rosacea are better understood. While doing "a hypothesis paper showing the biochemical and endocrine links between diet and rosacea" is of some interest, a much broader study might be framed about finding statistically significant differences in complete endocrinological workups in those who exhibit flushing and paired examples of those who do not. I suggest focussing on the root of the problem, not peripheral issues involving diet. Rick
  3. First, I strongly second Tricia's comments on funding priorities. But I guess I am a little confused as to the exact funding mechanism being proposed here. Are you suggesting that AML would fund specifically Smith, Mann, Braue, Varigos to do a similar study of diets as they pertain to rosacea? Or would AML fund any qualified principal investigators, again to study diet and rosacea? If it is the former, then I am not clear what RRDi's role would be, since Smith etal should write the grant and obtain the funding. If it is the latter, then it seems you need to identify the proposed PIs, and have them write the grant since they are the experts on the methodology. Rick
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