Guide

Rick, You may be right. I asked Dr. Cordain for some advice and got this reply today: Hi Brady, My plate is really full this semester, with two grant proposals to write, numerous papers and two major talks on top of my normal teaching load, so my time is precious -- I can give a little, but probably not what will be needed to steer this in the direction needed. I see extensive MEDLINE work ahead -- The best clue I can give you at this point is the EGF and EGF-R axis which I have mentioned previously -- the other clue is endogenous EGF in bovine milk and the ability of WGA to bind EGF and also act as a chimeric molecule pulling in peptide fragments in gut (both pathogenic and dietary) -- Also both the glycemic load and the n3 FA connection need to be thoroughly examined. Finally, a grant writer without an academician and facilities backing the project is a effort in futility. I cant really get behind this project until monies have been committed to do it right. Once again you are putting the cart before the horse. Your first priority as a private, non-profit entity will be to generate funds to underwrite and attract people capable of executing the project. A minimum of $100 K will be required to do a bare bones project (assuming you can get a researcher to take on the project basically gratis. Getting good control over diet for a sufficient sample size (power calculations needed) will take between $250-500K. Without a hypothesis to test, your grant writer will be groping in the dark. Since, the molecular basis for rosacea is currently unknown, it will take a creative and skillful mind, thoroughly familiar with not just rosacea, but also with an expansive knowledge of nutrition to get the project even slightly off the ground. Cordially, Loren Cordain, Ph.D. Professor, Department of Health and Exercise Science Colorado State University Fort Collins, CO 80523 __________________________________________end email It must be pointed out that since no research on diet and rosacea has ever been done, it can not be stated conclusively that the cause of rosacea is not related to diet any more than one can say the cause of rosacea is not related to flushing. The cause of rosacea is not known. The NRS lists a long list of dietary triggers for rosacea, which you no doubt are well aware of since most physicians will repeat this list of triggers, particularly spicey foods and alcohol. However there are no clinical research papers on this and this is based purely on anecdotal reports. What I suggest is that you begin a new thread in the ROSACEA RESEARCH section or another thread in the ASK THE MAC section on what research you would like done and get the MAC members to reply to this. Remember, the MAC members have only agreed to spend 15 minutes a month volunteering. They are busy professionals and we have spent most of their time this month on this topic. What we have here is unique. Try to get the Medical Advisory Board of the NRS to answer your questions. So write a good question or hypothesis and begin a new thread on what you would like researched. I think this thread barely passed and you can see the controversy this causes. Diet and rosacea is a hotbed of controversy. Always has been and always will be until we get some clincial research that settles this issue once and for all. Problem is that it is so difficult to even discuss it without emotion getting involved. The RRDi was formed because the members are not satisfied with the status quo research being done and we want some novel rosacea research that allows rosacean input into the process. Try suggesting your research to the NRS or any other non profit organization. What we are doing is unique and this first thread proved it. I appreciate your suggestion and hopefully Joanne will use your suggestion you make here about "finding statistically significant differences in complete endocrinological workups in those who exhibit flushing and paired examples of those who do not.'

This question was emailed to Dr. Boes on August 29, 2006: Dr. Boes, Is there any research you could suggest our grant writers could begin volunteering their time on that could help us? Brady Barrows Director RRDi Dr. Boes reply on August 29: Dear Mr Barrows, I am only learning about rosacea; being a PhD in immunology (I am not a dermatologist). A brief survey of recent literature lead me to think that money might be better spent on research why rosacea afflicts certain people of certain genetic background, or whether there is a link with early in life/abundancy in life of exposure to sunlight. A dermatologist from the panel may be able to support my assessment, or perhaps refute it. Take care, Marianne Boes

The Board of Directors have reached a decision and Joanne, our professional grant writer, has been given the go ahead to come up with something for this initial 'proposal' or thought on research involving rosacea and diet. Dr. Cordain suggested that a "a hypothesis paper showing the biochemical and endocrine links between diet and rosacea" could begin this process. Who writes this paper is the big question and Joanne no doubt has her hands full and could use any volunteer help or suggestions on what steps she should take next. This topic is still open for discussion. All we did with this thread is give Joanne the nod to go ahead and spend some volunteer time trying to come up with something. We still have a long way to go on this. For the record, I want everyone to know that I abstained from voting on this and four board members voted yes, one voted no, and one still is undecided or has not responded to any of this. But four votes carries the measure and gives Joanne the go ahead on this.

Basically, this has been the first 'proposal' put forth with any discussion. No one has come up with anything until this was suggested by Dr. Cordain, who now says he wasn't making a proposal. My understanding of this is that from what some have told me we are going about this all wrong, but at least we are discussing something. If anyone would like to come up with something better they can begin a new thread. Here is what an acquaintance suggested to me: Begin forwarded message: It sounds like you are asking the MAC to vote on whether your grantwriter should investigate the funding potential of the meat industry for a yet-to-be-designed study on rosacea and diet. Dr. Tseng asked for the grant proposal, which means he thought the study was already designed. Some of the other replies suggest similar confusion. What you and your grantwriter are suggesting isn't how it's traditionally done. So it seems there are two key points to consider as you evaluate the voting: First, are all MAC members aware that RRDi will ultimately be conducting the study (without at the moment a principle investigator or study design, only the desire to prove what feels intuitively clear to some of you, that diet causes rosacea)? There's a big difference between being a source of funding for others conducting research (the more traditional approach), and being a research institute that seeks funding to conduct it's own studies. Second, are all MAC members aware that the funding source being considered for this diet study is the meat industry, bringing to RDDi all the conflict of interests such a source entails? Dr. Cordain made a great suggestion: "Perhaps a better strategy would be for the scientists in your group to write a hypothesis paper showing the biochemical and endocrine links between diet and rosacea." I don't know which scientists he is referring to -- unless you know, he should explain if he is referring to members of MAC, or is he under the impression that RDDi has scientists in the background working for RDDi, to write papers and perform research? So while I don't know who would write it, such a paper could form the basis of a research proposal (making it much easier for your grantwriter). Also, having it published in a good peer-review journal would help legitimate your hypothesis of diet in some manner causing rosacea, and so make it easier to find funding. I think Dr. Cordain's last two emails to you, both dated 8/24, made critical observations about RRDi's approach in a gentle and tactful manner. ___________________________________________ end of email I sent the above suggestion to our grant writer, Joanne, who replied with this to me: Hi Brady, Okay, I think there seems to be agreement that we are going about things in an unusual way. But that was due to the type of grant we were hoping to ask for, which requires the investigator to be identified first. Otherwise, we need to put our efforts first into the fundraising campaign, meaning we ask for money for yet-to-be-determined projects. Perhaps the best thing would be to leave the meat association aside for the moment then, and I will look into the possibility of writing a hypothesis paper. I will also need to look closely at my work contract, as I suspect the rights to all my scientific thoughts now belong either to the institute where I work or the agency who pays my fellowship. But if the institute is happy for me to use their name, it would give this paper a good boost of credibility. I will be away most of the coming week, but will be in touch when I return. I like the new logo, by the way. Joanne __________________________________________________end email So I suppose Joanne will hopefully begin something with what we have learned from this first discussion on what to do about our first grant 'proposal.' We are still waiting on the board of directors to decide what to do about this. The board may decide to not do this and tell Joanne to forget about it. Diet and rosacea has always been a very big contraversy. Yet the NRS lists a long list of diet triggers that have never been clinically researched ever and are totally anecdotal reports. Everyone knows the list of diet triggers that the NRS publishes and no one cares that any of this has ever been researched. Yet when we discuss doing anything about studying the relationship of diet and rosacea you can see how the professionals feel about this subject simply by reading this thread. That is why the RRDi was formed and at least we have a membership that can discuss such subjects with professionals. There is one point that should be made clear. The RRDi is the 501 © (3) approved non profit organization sponsoring the research. Corporations like Galderma, Pfizer, and the American Beef Council can donate to the RRDi and receive a tax deduction for their donation. The RRDi can then use the money as they see fit and give the money to a respectable clinical researcher who will no doubt use the money to do the research. I am confident that once the money is received by the RRDi that clinical researchers will be happy to apply for the grant and take the money. In what order this is done remains to be seen, but I am happy to follow the traditional approach or create novel new ways to do research.

One of our volunteer graphic artists, Kelli, came up with our new logo and the board of directors approved it.

Dr. Cordain sent me this email today: From: Dr. Loren Cordain Subject: RE: First Grant Proposal Considered Date: August 24, 2006 7:56:59 AM HST Brady, I really think you are putting the cart before the horse and will make legitimate scientists shy away from this project. You need to have strong theoretical justification for doing a diet/rosacea study with a testable hypothesis or hypotheses. A grant writer without knowledge of the molecular and biochemical underpinnings of the disease is like an airplane without an engine -- it simply wont fly. A necessary and first step in writing any grant will be to uncover and logically present the role that diet may play in rosacea. Without identifying potential mechanisms, you have no hypotheses to test. Whether or not a random group of scientists think or don't think a proposal should be written is completely irrelevant without first knowing what objective issues the proposal would address. Diet and disease is a huge ocean to randomly dwell. You have taken the first step in generating interest among some of the players in the field, but to my eye, a fund raising campaign for your organization would be a more logical next step. Without sounding overly pessamistic, I don't believe that the people with the potential knowledge to pull this venture off will participate gratis. Thus, the need to generate a funding base is not an afterthought but an essential step that will make the difference of whether this ship will sink or sail. Regards Loren Cordain, Ph.D., Professor Department of Health and Exercise Science Colorado State University Fort Collins, CO 80523 _________________________________________________________________ My reply to Dr. Cordain: Dr. Cordain, If you would discuss this with the grant writer that would be great. I can forward all this to her for you. All we are doing at this point is simply deciding whether or not Joanne Whitehead should even spend any time on this or not. If we told her to take on this project and then later find out that the MAC disapproves of this grant from the get go she would be wasting a lot of time. The grant will have to go through many hoops to get the MAC's final approval. If you would read the discussion in the private forum at this url you would see that Dr. Wedrychowski has changed his vote to YES > http://www.members.irosacea.org/viewtopic.php?t=59 We are all very new to all this and learning as we go. From this experience we are trying to streamline the process of decisions. You are the only one to propose a grant and tell us where the money is. Others have mentioned some proposals and having us figure out where to go to get the money. Maybe we do put the cart before the horse, but at least we are trying to do something. Brady Barrows director@irosacea.org _______________________________________________________________ Dr. Cordain replied August 24 > Brady, First, I have not proposed a grant. I merely suggested that for any diet/rosacea project to get off the ground it will require funding. Secondly, any grant proposal will have to be written by someone with knowledge of the underlying dietary mechanisms that may be involved in rosacea. A quick MEDLINE search revealed that there is next to nothing directly related to the topic. So, unless your grant writer is an independent thinker capable of connecting the molecular dots linking certain dietary elements to rosacea, the project is doomed from the start. You must have a testable hypothesis with a reasonable rationale for testing it. To date, except for a few comments I have previously made, you have zilch. To be even more blunt, most legitimate scientists will not donate any substantial time or effort to any project without some form of remuneration, as most have real jobs that take priority. Now, if you were first able to raise a funding pool, and then write what is called a RFP (request for proposals) and submit it to the academic community, you would have a fighting chance. Money talks, and you will be able to turn scientific heads with a funding base and an RFP. Asking a group of scientists to say yea or nay to having a professional grant writer (whatever that means? what are her qualifications?) write a grant without aims, or testable hypotheses is a complete joke and a waste of time for all involved. Finally, writing a grant without an RFP to direct it to represents an effort in futility. A brief check of the names of scientists on your list is indicative that they are not new to the grant writing and funding process. You are the one who is new to the process and you need to understand the NIH model before you proceed. Additionally, I have not told you where "the money is". The MLA was interested in Neil's project because he had prior contact with them and knew that they would have vested interest in a diet/acne project. He wrote the grant based upon the hypothetical mechanisms I had outlined in prior publications and in numerous email correspondence we had. MLA is not a cash cow like NIH, but rather a private entity with modest resources for funding diet related research. Neil's funing represented a one off situation. The MLA may or may not be interested in doing a diet/rosacea study, but the crucial element will be to generate interest among scientists capable of pulling the study off. I applaude you for "trying to do something" but your approach is naive. Again, you need to first initiate a funding campaign and generate sufficient monies to get key players involved at a level and committment that will make a difference -- 15 minutes a month wont work. Cordially, Loren Cordain, Ph.D., Professor Department of Health and Exercise Science Colorado State University Fort Collins, CO 80523 _______________________________________________________________ Brady replied: Dr. Cordain, Joanne Whitehead replied to your last email with this response: "Dr Cordain makes some valid points, and I understand his reasoning. Of course we are missing much in the work plan, as we can't proceed even to a preliminary application without having a principle investigator. However, at this early stage, a positive response from the MAC and corporate members would simply allow me to make the first step, which is to communicate with researchers who do have the expertise and resources to carry on a study of this type. Whether we can convince anyone to take on this project is of course a long shot, given that reserchers have their own agenda to pursue. On the off chance that we do have a positive response from a qualified specialist, then we can begin to work out the study design - what factors do we want to address and how do we want to address them. This would be mainly up to the investigator, of course, with us at RRDi giving as much support as we possibly can. I realize there is a very real possibility that this will not progress even to a preliminary application to the MLA, and that is fine. But I strongly believe there are different ways of addressing the issue. One is to have a hypothesis based on molecular mechanism, which can be tested with a direct dietary intervention. The other is to demonstrate what we (almost) all intuitively know, which is that diet affects rosacea, in a manner which would elevate this principle from anecdote to experimental data. Once we are firmly in the realm of science, we will have the credibility to make further exploration possible. These are only my personal opinions, but I think we have nothing to risk by putting the word out to scientists that we would like to pursue this line of research. This is all we are asking of our members at this point. Joanne Whitehead" As to your reply below I posted it as well in the private forum in the ASK THE MAC section. All I went by when you initially made the 'proposal' was what you said in an email to me dated July 9, 2006 which reads as follows: Hi Brady, "My colleague Neil Mann at RMIT has just completed a dietary intervention showing that a high protein low glycemic load diet ameliorates acne symptoms. See attached abstracts. I believe a similar study could be easily conducted with rosacea patients. Neil failed to control for at least 2 dietary factors which I believe are also crucial in not only ameliorating acne symptoms but also rosacea symptoms. I have outlined these mechanisms in my book, "The Dietary Cure for Acne". Our research group is currently in the middle of a clinical trial testing the hypothesis that dietary WGA enters plasma via the EGFR I spoke of earlier. We believe that WGA adversely influences hormonal and cytokine function that underlie a number of skin diseases and other health problems. Cordially, Loren Cordain, Ph.D." Joanne picked this ball up and went with it. When she posted she was going to try to do what you suggested above, I thought it best to run this by the entire MAC before she spends many volunteer hours on this and then later finding out the MAC disapproves her trying to get this grant. So far, the results are a tacit approval of Joanne pursuing this grant with the following votes: Dr. Cordain: YES Dr. Schaller: YES Dr. Brodell: YES Dr. Latkany: YES Dr. Cremers: YES Dr. Sun: YES Dr. Johnson: YES Dr. Tseng: YES Dr. Wedrychowski: YES Dr. Boes: NO Dr. Plewig: NO Dr. Lehmann: NO Dr. Wedrychowski initially voted against this but after Joanne posted her comment in the ASK THE MAC section as follows: "Drs Cremers & Sun both mentioned lacking understanding of mechanisms with respect to known triggers. I have just seen that the National Center for Complementary & Alternative Medicine (a branch of the NIH) lists as their first research priority 'mechanisms of action'. http://nccam.nih.gov/research/priorities/index.htm#5 If we play our cards right, we could demonstrate a dietary correlation in the MLA study, then use it as leverage to apply for an NCCAM grant to explore the mechanism. Joanne Whitehead" Dr. Wedrychowski changed his vote to YES and posted this statement in the ASK THE MAC section: "In my opinion we should proceed with it. This site convinced me: http://nccam.nih.gov/research/priorities/index.htm#5 " The above post can be found at this url > http://www.members.irosacea.org/viewtopic.php?t=66 Joanne is a very capable grant writer and will address all the MAC's concerns so that we can get a well respected, non biased, clinical research scientist that the MAC will approve awarding this grant to. If the Australian Meat Association awards this grant, I would like to ask the American Beef Council to match it. We could attract someone at Cambridge or Oxford or other reputable research center to do this grant. Maybe I am naive but I am also hopeful and had a dream that will hopefully come true. Brady Barrows director@irosacea.org

Just thought I would let the corporate members have a poll on the first grant proposal ever considered by the MAC and the board of directors to see how the corporate members feel about this. The topic is mostly discussed in the ASK THE MAC section at this url > http://www.members.irosacea.org/viewtopic.php?t=59 If you would like to vote in this poll and make a comment as well, it will help the board of directors to decide the final decision. At this point, the only decision is whether or not our professional grant writer should proceed in trying to obtain this grant. The final grant will still be reviewed by the MAC and approved before it is approved by the board of directors. There are several major hoops to go through before any research is done. This is only the very first step. Thanks.

On Aug 21, 2006, at 6:29 AM, Dr. Scheffer C.G. Tseng wrote: Can you append as an attachment of this grant proposal for me to reveiw? For any proposal, we at least should identify the missing link between what is known and what is not known. The two papers cited need to be reviewed as well to see the validity before a new proposal can be best judged. Can you send pdf files of these two papers? Scheffer C. G. Tseng, M.D., Ph.D. Director, Ocular Surface Center Medical Director, Ocular Surface Research & Education Foundation Director, R & D Department, TissueTech, Inc. Brady Barrows responded: Dr. Tseng, Here is what I came up with and will contact Dr. Cordain to see if he has copies of the entire articles: Loren Cordain, Ph.D., says, "I believe that like acne vulgaris, rosacea results from interactions between genetic and environmental factors, and that diet plays a key role in the etiology of this disease via its modulating influence upon cytokine and hormonal homeostasis. In support of this notion are recent studies showing that EGF receptor blockers elicit non-comedo acne symptoms similar to rosacea. We now have preliminary evidence to show that a substance found in whole wheat, wheat germ agglutinin (WGA) competitively binds the EGFR in gut (thereby displacing the endogenous ligand) and enters plasma via this pathway. Because WGA displaces the endogenous ligand, it will upregulate the EGFR in a manner similar to pharmaceutical EGFR blockers. We believe that diet also elicits a number of other endocrine responses that are intimately linked to the pathophysiology of rosacea." In an email to me on this subject, Dr. Cordain said, "My colleague Neil Mann at RMIT has just completed a dietary intervention showing that a high protein low glycemic load diet ameliorates acne symptoms. See attached abstracts. I believe a similar study could be easily conducted with rosacea patients. Neil failed to control for at least 2 dietary factors which I believe are also crucial in not only ameliorating acne symptoms but also rosacea symptoms. I have outlined these mechanisms in my book, "The Dietary Cure for Acne". Our research group is currently in the middle of a clinical trial testing the hypothesis that dietary WGA enters plasma via the EGFR I spoke of earlier. We believe that WGA adversely influences hormonal and cytokine function that underlie a number of skin diseases and other health problems." Dr. Cordain further states, "In regards to sugar (sucrose) being a trigger for rosacea, I believe this phenomenon occurs because the fructose moiety of sucrose elicits a transient and/or chronic hypertriglyceridemia which upregulates keratinocyte EGF receptors. Additionally, high glycemic load carbohydrates like sucrose simultaneously may increase a number of pro-inflammatory cytokines such as IL-1a which is associated with opthalmic rosacea symptoms." Dr. Cordain wrote the book, The Dietary Cure for Acne. as well as The Paleo Diet. Here are the abstracts mentioned in paragraph above: Smith R, Mann N, Braue A, Varigos G. Low glycemic load, high protein diet lessens facial acne severity. Asia Pac J Clin Nutr. 2005;14 Suppl:S97. Background - Acne vulgaris is a multi-factorial skin disorder which affects the 85-100% of the adolescent population in Western civilizations. Despite its high prevalence in the West, acne prevalence is extremely low or rare in non-westernized societies. It has been proposed that refined, high glycemic foods common in Western societies may accentuate underlying causal factors responsible for its proliferation. Objective - To determine whether a low glycemic load diet, comprised of high levels of protein and low GI foods, can alleviate the severity of acne symptoms in young males. Design - Male acne sufferers [n=43, age=18.3 +/- 0.4 (mean +/- SEM)] were randomly assigned to either the dietary intervention (n=23) or control groups (n=20). The intervention diet consisted of 25% energy from protein and 45% energy from low glycemic index carbohydrates. The control group received no information about diet nor were they given dietary instruction. The efficacy of dietary treatment versus control was clinically assessed by a dermatologist using a modified Cunliffe-Leeds acne scale. The dermatologist assessed facial acne by means of lesion counts and was blinded to the subject's group. Outcomes - Dietary intervention resulted in a reduction in total lesion counts (-23.1 +/- 4.0 lesions, P <0.001) and inflammatory counts (-16.2 +/- 3.0 lesions, P <0.001). The control group also showed a reduction in total lesion counts (-12.0 +/- 3.5 lesions, P <0.01) and inflammatory counts (-7.4 +/- 2.5 lesions, P <0.05). However, between group analyses showed that the reduction was significantly greater in the intervention group for total counts (P <0.05) and inflammatory counts (P <0.05). Conclusion - These data indicate that a low glycemic load diet, comprised of high levels of protein and low GI foods, significantly decreased the mean number of facial acne lesions, therefore alleviating the severity of acne symptoms. However, the multi-factorial nature of this condition is reflected in the fact that the control group also showed a decrease over time, thereby suggesting that other factors are at play. Smith R, Mann N, Braue A, Varigos G. The effect of a low glycemic load, high protein diet on hormonal markers of acne. Asia Pac J Clin Nutr. 2005;14 Suppl:S43. Background - Acne vulgaris is a common endocrine condition affecting adolescents in Western civilizations. Acne typically manifests during puberty when there is a transient decrease in insulin sensitivity. It has been suggested that high glycemic nutrition during puberty induces hyperinsulinemia which increases the bioavailability of androgens and certain growth factors. These changes may induce follicular epithelial growth and increased sebum production - two factors responsible for acne proliferation. Objective - To determine the effect of a low glycemic load diet, comprised of high levels of protein and low glycemic index (GI) foods, on hormonal makers of acne vulgaris. Design - Male acne sufferers [n=43, age=18.3+/-0.4 (mean +/- SEM)] were randomly assigned to either the dietary intervention (n=23) or control groups (n=20). The intervention diet consisted of 25% energy from protein and 45% energy from low glycemic index carbohydrates. The control group received no information about diet nor were they given dietary instruction. Venous blood was collected at baseline and 12-weeks for an assessment of testosterone, sex hormone binding globulin (SHBG), free androgen index (FAI), dehydroepiandrosterone - sulfate (DHEA-S), insulin-like growth factor (IGF)-I and IGF-binding proteins -I and -3. Outcomes - Dietary intervention resulted in a significant reduction in FAI (-9.1 +/- 4.5, P<0.05) and DHEA-S (-0.72 +/- 0.33 umol/L, P<0.05) and an increase in IGFBP-1 (5.3 +/- 1.6 ng/mL, P<0.01). No significant changes were observed in levels of IGF-I, IGFBP-3, testosterone or SHBG following dietary intervention. The control group showed no change in any of the blood parameters measured. Conclusion - These data suggest that a low glycemic load diet may reduce androgenic activity (as indicated by a reduction in FAI and DHEA-S) and may oppose the growth promoting effects of IGF-I by increasing levels of its binding protein, IGFBP-I. This implies that a low glycemic load diet may reduce hormonal influences involved in acne pathogenesis.

Many of the MAC members are having problems accessing the private forum and have responded by email as well. Here are their votes: Dr. Cordain: YES Dr. Schaller: YES Dr. Brodell: YES Dr. Latkany: YES Dr. Cremers: YES Dr. Sun: YES Dr. Johnson: YES Dr. Tseng: YES Dr. Wedrychowski: YES Dr. Boes: NO Dr. Plewig: NO Dr. Lehmann: NO I received these replies by email which you can read the full comments: From: Robert Latkany, M.D. Subject: Re: RRDi Medical Advisory Committee [MAC] Date: August 18, 2006 2:36:47 AM HST To: director@irosacea.org Dr Latkany gives the okay but questions what the exact grant is because all I see is a proposal for diet and rosacea and there are plenty of books devoted to this so please clarify so I could better answer this. relief@dryeyedoctor.com -- Robert Latkany, M.D. Founder/Director Dry Eye Clinic NY Eye & Ear Infirmary Center for Ocular Tear Film Disorders at Laser & Corneal Surgery ____________________________________________________________________ From: Andrzej Wedrychowski Subject: Re: RRDi Medical Advisory Committee [MAC] Date: August 18, 2006 1:29:09 AM HST To: director@irosacea.org No, we should not pursue this diet idea. If anybody is able to show me that I am wrong I will listen. Take care, Brady Andrzej On August 24 Andrzej changed his vote to YES - see this post > http://www.members.irosacea.org/viewtopic.php?t=66 _________________________________________________________________ From: Sandra Cremers, MD Subject: RE: RRDi Medical Advisory Committee [MAC] Date: August 18, 2006 9:45:11 AM HST To: director@irosacea.org Hi Brady, I¬¥ll be on vacation till beginning of Sept, but a quick note: a project on diet & rosacea is not a bad idea. It has been researched before without conclusive data on the underlying etiology (ie it is known that red wine makes rosacea sx worse in some rosacea pts but it is unclear why). Thus if a full literature review reveals a gap in the understanding of which foods trigger rosacea & why, then such a project would be a good one. S _________________________________________________________________ From: Jenny Sun, MD Subject: Re: RRDi Medical Advisory Committee [MAC] Date: August 18, 2006 12:52:54 PM HST To: director@irosacea.org Jenny Dear Mr. Barrows, I am not sure how to use the post so I just write to you directly. I think it is a good topic because in real life we know that alcohol and spicy food could worsen Rosacea. To study how alcohol and the active incredients in spices effect the smooth muscle cells and endothelium cells may provide insight for possible mechanism of the development of Rosacea. Thanks, Jenny _________________________________________________________________ From: Marianne Boes, Ph.D. Subject: Vote Date: August 21, 2006 4:42:33 AM HST To: director@irosacea.org Dear Mr Barrows, I voted against pursuing the grant proposal on diet and rosacea. I think time and money would be more wisely spent on investigating why certain populations develop rosacea more than others. While I am not familiar to rosacea research as such, my fulltime job here at the Harvard hospitals for the last 8 years focuses on immune responses. A more routine step to take to investigate underlying mechanisms that cause the development of rosacea would be to compare immunological backgrounds of afflicted individuals, in comparison to a control group. It may well be that, as in many disorders, a genetic predisposition is found. I would focus on HLA typing initially (as HLA has a clear link with many autoimmune diseases). Then perhaps focus on questionnaires to afflicted individuals and their non-afflicted siblings on their life-time exposure to direct sunlight. Both genetic background and sunlight appear to me as more valid lines to pursue than diet, which is widely variant amongst individuals. Marianne Boes -- Marianne Boes, Ph.D. Assistant professor, Department of Dermatology, Brigham and Women's Hospital, Harvard Medical School On Aug 23, 2006, at 6:26 AM, Marianne Boes wrote: While most voted yes, most MAC members appear skeptical as I gather from their comments. Only deciding based on their yes/no vote would be an unwise decision, I think. Best, Marianne Boes ___________________________________________________________________ From: Loren Cordain, Ph.D Subject: RE: acne diet studies Date: August 22, 2006 11:57:04 AM HST To: director@irosacea.org Hi Brady, I spoke with Neil last November while in Melbourne & I believe that he plans to publish a series of papers on his diet/acne study. I dont know the status of these papers to date except that they are not yet in print. To my way of thinking a free form grant proposal may be premature at this point, particularly if the grant writer is unaware of the molecular and endocrine data linking diet to rosacea. Perhaps a better strategy would be for the scientists in your group to write a hypothesis paper showing the biochemical and endocrine links between diet and rosacea. Perhaps some of the best evidence surrounds the EGF cascade I have previously pointed out and that EGF-R blockers elicit a non-comedonal acne similar to rosacea. Once a peer review paper has been written outlining the theoretical link between diet and rosacea, it may be possible to approach a private agency with vested interest (ala the MLA) to provide modest funding to obtain pilot data similar to Neil's study. Cordially, Loren Cordain, Ph.D. Professor, Department of Health and Exercise Science Colorado State University Fort Collins, CO 80523 ___________________________________________________________________ From: Dr. Gerd Plewig Subject: RRDi Medical Advisory Committee Date: August 22, 2006 6:10:45 AM HST To: director@irosacea.org Dear Brady Barrows You asked for my opinion about the proposed research project concerning diet and rosacea. Without knowing details, I feel that this is not an appropriate way to study a disease. Dietary factors have long been suspected in almost any disease. Except for very rare genetic diseases or hypersensitivity situations like gluten-enteropathy diets play no role in the prevention, therapy or aggravation of a disease. This certainly is true for rosacea. Therefore I cannot recommend such a project. You say time and especially money should be spent for serious projects. Sincerely yours Prof. Dr. Dr. h.c. mult. Gerd Plewig, FRCP Ludwig-Maximilians-Universit?§t M?ºnchen Klinik und Poliklinik f?ºr Dermatologie und Allergologie Frauenlobstr. 9-11 D-80337 M?ºnchen ___________________________________________________________________ From: Dr. Tseng Subject: RE: acne diet studies Date: August 23, 2006 2:21:58 AM HST To: director@irosacea.org Of course, YES. Scheffer C. G. Tseng, M.D., Ph.D. ___________________________________________________________________ From: Dr. Lehmann Subject: AW: Diet/Rosacea Grant Proposal Date: August 24, 2006 4:07:07 AM HST Dear Brady Barrows, I have difficulty in foloewing the PC pathways since I do not have my password available. Anyhow, I do not think from the available data that there is any evidence on the relationship of rosacea and special diets. I therefore, would vote against the promotion of this project. Since there is evidence, tthat rosacea may be related to an increased activity of reactive oxygen species (ROS) and a deficient function of the antioxidant system, the study of these related systems would be much more promising. With best regards Prof.P.lehmann ___________________________________________________________________ NOTE: My advice is that if we can't get at least seven of the MAC members to agree to the initial proposal to discuss this and give at least a tacit approval there is no point in pursuing this. We can't ignore the advice of the MAC or we will use all credibility as an organization. However, if seven of the MAC members give at least a nod of approval to pursue this, the board of directors should then be given the task of deciding whether to approve this, since the board makes the final decision. I am abstaining from voting on this so four of the board of directors will need to vote and approve this before Joanne (our volunteer grant writer) begins pursuing this proposal (I don't want anyone to accuse me of a conflict of interest). I know all this is a bit cumbersome and awkward, but this is actually the FIRST time we have ever done this, make a decision about what the MAC approves of or not. Eventually we will streamline this process but for now we are all learning how to go about making a decision on something. This is a historic moment for the RRDi. The MAC is still learning how to use this forum, the public corporate members are still very new to this process, and not to mention the board of directors is just as new to this as everyone else. Everyone needs to be patient, kind, respectful, and above all dedicated to volunteering their talents and energy to this.

Ask Dr. Tseng, Dr. Cremers, or Dr. Latkany.

Adrian gave me the link to the application form and I filled it out. Here is Google's response: From: googlegrants@google.com Subject: Thanks for applying to Google Grants Date: July 26, 2006 2:30:38 PM HST To: director@irosacea.org Thank you for your interest in the Google Grants program, and for submitting your application. Our grants committee reviews applications and selects award recipients every quarter. Within six months of your submission, we will notify you by email about the status of your application. Because of the high level of interest in our program, we're not able to respond to requests for information about the status of individual applications. We appreciate your patience in the meantime. Thank you again. Sincerely, The Google Grants Team

Jen, I think the brochure is fine but noted one thing we need to get permission on. Mentioning David Pascoe's r-s would be inappropriate unless we get permission from David first. David has expressed his support for the NRS and may object to having r-s mentioned in our brochure. Run this by David before we publish to get permission. We haven't had much support at all from David or the r-s group. Warren's group is officially tied in with the RRDi and that is a good idea to mention. We have no official connection to David's group. I have over 1000 members in my two yahoo groups but I don't want to have this connected to the RRDi since I think that would be inappropriate. And we should also run this by the board of directors to have r-s be officially connected to the RRDi if David Pascoe gives us permission to do this. We need the board's approval as well. I think that we should discuss this matter in the private board 'room' at the botttom of the members' forum.

We have been accepting paypal since 2004.

All we need is permission from the individual that the RRDi may publish the photo. Why would the NRS or a doctor need to be involved? We could publish each photo as we see fit either in print, pdf, or on the web, if we have written permission from the individual. We need to keep all the permission emails in a safe place. If something comes up we need each photo categorized, labeled with an identity number or referrence to who gave the permission. And Warren, do you know how to fix the "quote" error we are getting? Steve has been busy and can't get around to fixing this.

Adrian, I would like to propose that that the RRDi compose a rosacea photo campaign asking rosaceans to donate a photo of their rosacea face to the RRDi so we can choose the ones we would publish in our new brochure. Donors of such photos must understand that permission is being given to use the photo in any way the RRDi sees fit, for instance, on our web site or in a publication. We would also have to decide if the eyes should be blacked out or not. I imagine that such a campaign, once announced and spread throughout the internet, would bring in dozens, if not more than enough photos to choose from for our brochure. The photo section in the Rosacea Forum is a good place to start to ask if we could use those photos, not to mention the rosacea yahoo groups.

Dr. Cordain suggested the following: "Neil Mann's study was funded by the Meat and Livestock Association of Australia & cost about $100,000 and started with an n=47. I believe that a similar study could easily be pulled off with rosacea patients. A well executed pilot project would make a tempting carrot for further diet/rosacea projects..." The two studies are the following: Smith R, Mann N, Braue A, Varigos G. Low glycemic load, high protein diet lessens facial acne severity. Asia Pac J Clin Nutr. 2005;14 Suppl:S97. Smith R, Mann N, Braue A, Varigos G. The effect of a low glycemic load, high protein diet on hormonal markers of acne. Asia Pac J Clin Nutr. 2005;14 Suppl:S43.

Dr. Peter Crouch has announced with regret that he is unable to volunteer on the RRDi Medical Advisory Committee due to professional constraints and other personal commitments. He wishes the best for the RRDi and is sad to have to leave the MAC.

When setting up the non profit corporation in Hawaii, there is a choice to either allow corporation members or not, and I elected to allow corporate members so that individual rosaceans may help direct the RRDi. Corporate members of the RRDi elect the board of directors which is the only legally established 501 c (3) non profit organization for rosacea research that allows this. Other non profit organizations are closed board of directors that do not allow anyone to have any choice who the board of directors are who decide how the money is spent for the organization. In order to be a legal corporate member of the RRDi you are required to identify yourself with your name and mailing address so that the RRDi can contact you. Your name and address is held in confidence by the RRDi and will never be disclosed to anyone without your permission. So tecnically, you are a member of the RRDi which is a non profit corporation established in the State of Hawaii.

I like your ideas Adrian and we need to funnel your energy into something so we can use it. Maybe you would synergize others to help. As to mentioning our 'direct contact with the largest 2 rosacea discussion boards' we should remember that the RRDi is officially connected to the Rosacea Forum as the public forum to discuss rosacea. However, the RRDi is not connected to any other board. Many of the members of the RRDi are members of other boards. Not all these other boards are supporting the RRDi directly or indirectly. I think we should indeed look into AWARENESS campaigns since companies sponsor such events. The NRS has a 'Rosacea Awareness Month' in which they no doubt get such sponsorship from pharmaceutical companies. At this point, we are just beginning to send out letters to find out what the response is from the major pharmaceutical companies. Jenny's letters are a good start and we will probably be doing this for months, if not years, before we find out what we are doing. Another route to take is to hire grant writers which is what many non profits do, along with hiring many other professionals to do the work that the RRDi is doing with volunteers. Volunteers are nice, but the sad fact is that volunteering has its limits. Most people don't have the time to volunteer and need to be paid for their services. Patience is the word with volunteers. Whatever anyone volunteers for, they should be commended and appreciated. And Adrian, I appreciate your thoughts. I hope we can use your energy to get some of your ideas working.

Jenny, Looks great. We can put up a 'donors' page and list who donates with a link to their web site if they want it. As you may already know, many non profits acknowledge their sponsors. I think your letter is fine.

The current board members are listed on the RRDi website at this url > http://irosacea.org/board/ You are welcome to ask the board members any question or make a suggestion here in this forum.

Mike, Yes. There is a Ask the MAC... forum for this purpose. All the physicians and the PhD are very busy professionals but have agreed to answer some questions about rosacea research and what the corporate members want the RRDi to spend any funds on rosacea research. That is the whole concept of this corporation. Rosaceans are invited to have a say into what research should be done. The MAC can answer questions about what is practical or best since they all have experience in the field of research. We may not get these professionals to post hours and hours of posts, but they have agreed to spend a little time with the RRDi private forum. The Ask the MAC... forum is the place to post your questions. In time, we hope to hear from each member of the MAC. Before anyone asks the MAC it would be a good idea to discuss in the ROSACEA RESEARCH forum with other corporate members what rosacea research the corporate members want. We can use the poll feature to vote on different suggestions. Then, once a concensus is reached we can move over to the ASK THE MAC forum with the results. We can take all the time we want discussing this subject in the ROSACEA RESEARCH forum and not waste the time of the MAC members until we have reached a concensus. The MAC may enlighten us on what we want isn't really practical or some other information that we didn't know. The MAC will at least listen to us. The charter says the MAC advises the Board of Directors on what rosacea research the RRDi should engage in. The Board of Directors makes the final decision. The corporate members have a vote on who serves on the Board of Directors. There is no other non profit organization for rosacea research that allows rosaceans a say into what research rosaceans may want. And all this has been done with volunteers.