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    Charter

     

    The purpose of the Rosacea Research & Development Institute [RRDi] is to fund research and development for finding a cure for rosacea by establishing a Medical Advisory Committee [MAC] of the best available minds on rosacea and to publish the results of this endeavor to the public and professional groups. This MAC will provide the direction of the research. Research may also include studying various treatments for the control of rosacea in multi-center, double blind, placebo controlled clinical trial studies. The RRDi is commited to support patient advocacy for those suffering from rosacea. This organization is open to the public and membership is free and has been organized by rosaceans for rosaceans. This organization is a non-profit corporation registered in the State of Hawaii and 501 (c) (3) tax-exempt status approval has been obtained from the IRS effective June 7, 2004. The Articles of Incorporation, the Bylaws, and the Conflict of Interest Policy are available for the public.

     

    Membership is open to the public and is free. Rosaceans are specially invited to join. All who join become members of the corporation and for now this number is not limited but may be revised in the future by the institute. There are two categories of members: 

    Voting Member (a member who choses voluntarily to provide contact information such as first and last name, mailing address and phone number, email addresses)

    Non Voting Member (a member who only provides one email address)

    A rosacean is anyone who is diagnosed by a physician as having rosacea. All that is necessary to be designated a voting member is a statement from the member that a diagnosis of rosacea has been obtained from a physician as well as the contact information mentioned above for voting members. Voting members should be rosacea sufferers (rosaceans). 

    Non-rosaceans are permitted to join and should identify themselves as such upon demand from the institute. Non-rosaceans are those who have not obtained a diagnosis of rosacea by a physician. 

    Any member of the institute may be removed from the membership at any time at the sole discretion of the institute. Rules of the institute are published and available to the public. Violation of the rules may be grounds for termination as a member of the institute. Membership in the institute is a privilege.

    Funding will provide a rosacea MAC of the best available minds on finding a cure for this disease. The selection of who is chosen to be in this MAC will be based on not only the qualifications of the individual but also from nominations by both rosacean and non rosaceans members of the institute.

    Sources of funding to the institute will be publicized including the name of the donor unless the donor requests anonymity. Expenses of the institute will be publicized down to the last cent, showing where all the spending went and for what purpose since transparency is a core principle of our non profit organization. 

    The philosophy and spirit of this institute is that funding should predominately be used for research and development and not for the administration of the institute. Volunteers are an integral part of this spirit and we hope to include member rosaceans and non-rosaceans who are willing to help the purpose of the institute become a reality. We need your help to find a cure for rosacea, to research rosacea, to publish the findings of this research and provide a MAC of the best available minds on rosacea. The views and suggestions of rosaceans will be an integral part in directing the research on rosacea, in choosing the MAC and the directors of the institute. Voting members of the institute will have a voice in the decision making of the institute, although directors of the institute will make all final decisions.

    Members of the institute will not profit from the institute however the Medical Advisory Committee members or members may be compensated for services rendered to the institute.

    Members will elect a board of directors which will include:

    Director, Assistant Director, Secretary, Treasurer and other board members. The board of directors will decide all matters of the institute and will be volunteers.

    Funding on rosacea research by the RRDi will not be used on animal testing.

    Our Mission Statement may be read by clicking here.

    This charter may be revised from time to time by the institute when deemed appropriate at the sole discretion of the institute.

  • Posts

    • Skin Pharmacol Physiol 2007;20:199–210  DOI:  10.1159/000101807  
      Beneficial Long-Term Effects of Combined Oral/Topical Antioxidant Treatment with the Carotenoids Lutein and Zeaxanthin on Human Skin: A Double-Blind, Placebo-Controlled Study  
      P.  Palombo,  G. Fabrizi,  V. Ruocco, E. Ruocco, J. Fluhr, R. Roberts, P.  Morganti 
    • From 1998 through 2005 there was an incredible volunteer spirit that drove the formation of the RRDi. Since 2005 the force that motivated so many to bring together rosacea sufferers into a non profit organization has dwindled to just a flickering wick. Why is it that rosaceans (rosacea sufferers) don't volunteer anymore?  Andy Seth, an entrepreneur, has a blog post, The Way We Think About Volunteering Is Dead Wrong, states, "research shows that the happiest volunteers are those who give 2 hours per week. That’s it. 2 hours."   If the RRDi could get any rosacean to volunteer 2 hours a weeks, that would be miraculous. Are there volunteers who actually volunteer that many hours a week? There must be, otherwise the study is bogus. If we could get any RRDi member to just post their thought or experience with rosacea for 15 minutes a week that would be incredible. We have dotted the RRDi forum with requests to RRDi members to simply post anything and the 1200 plus members as of this date are simply miniscule when it comes to posting. Getting our members to post is a challenge. If you have some insight how to get our members to post, we are all ears. You can reply to this post and comment to your heart's content. Of course, that is the issue, the RRDi members' hearts are not content to post. Why is that? The research Mr. Seth referred to may have been the study commented on by the American Psychological Association that reports, "Volunteers lived longer than people who didn't volunteer if they reported altruistic values or a desire for social connections as the main reasons for wanting to volunteer, according to the study." This same study, Andrea Fuhrel-Forbis, the co-author concludes:  "It is reasonable for people to volunteer in part because of benefits to the self; however, our research implies that should these benefits to the self become the main motive for volunteering, they may not see those benefits."  One of the benefits is what is called 'helper's high' which has been scientifically confirmed. [1] Of course, if a RRDi member who has rosacea helps another rosacea sufferer that would be the basis for receiving the 'helper's high.' Rosaceans supporting rosaceans.  In trying to understand why volunteering amongst rosaceans has continued on this downward course, and googling this for an answer, The Guardian has an article about this subject and concluded, "But while the benefits of volunteering are clear, there is worrying evidence that the people who could benefit most from giving their time are precisely those least likely to be involved."  Volunteer Match (which the RRDi has joined) has an article on this subject and states that the Bureau of Labor Statistics Report shows "that volunteer rates have been steadily declining for over a decade," [2] and comments, "There’s an endless supply of reasons that could explain why volunteer rates are falling. Last year, upon seeing the results, VolunteerMatch President Greg Baldwin argued that volunteer rates are falling because we as a nation don’t invest enough resources in the nonprofit sector. Without resources, nonprofits simply don’t have the capacity to effectively engage volunteers. Someone in the comments of that post argued that the falling rates can be attributed to the fact that more people are overworked with less time on their hands. Others say people are simply lazier than they used to be. I personally think it could be attributed to a shifting trend away from community involvement, due to the emergence of online communities, young people moving more often, and other factors." [3] In the above article mentioned [3] there are a number of comments and I think Ron from Florida's [April 16, 2016] comment is insightful: 
      "When I was younger, volunteering and giving back was part of life. It was something that we did and didn’t think twice about it. I don’t see that same philosophy these days. It’s to the point that schools here require some level of community service to complete your graduation requirements." Stem Learning reports, "It is suggested that stagnating volunteer numbers and in some areas, reducing numbers of volunteers, along with cuts made by local authorities falling disproportionately upon the volunteering sector funding, suggests a potential fall in people volunteering per se. Furthermore the 2015/16 Community Life survey, highlighted 14.2 million people formally volunteered at least once a month in 2014/15 and although rates are mostly unchanged, it appears irregular volunteering appear to show a 5% drop!" Carey Nieuwhof lists 6 REASONS YOU'RE LOSING HIGH CAPACITY VOLUNTEERS. I don't see how those six reasons are related to the RRDi, but I am all ears to anyone who can point out to me what the RRDi isn't doing or not doing with regard to Carey's six reasons. Our page on volunteering covers most of what Carey is discussing.  Without a doubt this explains the situation. Any thoughts on this subject would be much appreciated.  Online Volunteering Dr. Natalie Hruska says that the studies indicating a drop in volunteering over the past decade "do not factor in kinds of volunteerism today, like virtual volunteering" and writes there is "a necessity to redefine what volunteerism is and how we understand it today." [4] End Notes [1] Helper's High: The Benefits (and Risks) of Altruism, Psychology Today [2] According to the 2015 report, 24.9% of the U.S. population over the age of 16 volunteered at least once in the past year. In 2011, this percentage was 26.8%, and in 2005 it was 28.8%. [3] The U.S. Volunteer Rate Is Still Dropping. Why?, Tess Srebro | March 25, 2016 | Industry Research | Engaging Volunteers, Volunteer Match [4] Dr. Natalie Hruska, April 12, 2016 POST to the article in end note 2. Dr. Hruska has a video below that discusses online volunteering:  Dr. Hruska has written a book on this subject, Managing the First Global Technology: Reflections on a relevant application of the Internet, in Kindle or Paperback. 
    • Dr. Ben Johnson, RRDi MAC Member, discusses a holistic approach to treating rosacea in an interview with Lori Crete, Licensed Esthetician, Spa 10. 
    • I had a mole on my forehead that I was told that 3% Hydrogen Peroxided might remove, so I dabbed a little on the mole and after some weeks it did indeed remove the mole. However, I noticed that the rosacea or seb derm on my forehead that was near the mole also cleared up. So I experimented and began putting 3% Hydrogen Peroxide on my red spots on my forehead and after some days they began to fade away too!  Since then I have been putting 3% Hydrogen Peroxide on all my facial rosacea red spots and letting it dry, then adding the ZZ cream, just before bed and this regimen seems to really work for me. I also have taking the Lutein/Zeazanthin 40 mg capsule each day. I also avoid sugar as much as possible and eat very low carbohydrate. 
    • An interesting article in The New York Times Magazine states, "Enough people reported good results that patients were continually lined up at Mesmer’s door waiting for the next session."  Dr. Mesmer is where the word mesmerize comes from. The article explains how 'double blind' placebo controlled clinical studies originated and why drug companies have to differentiate between a drug's actual pharmaceutical effect and the placebo effect. I particularly like this paragraph in the article: 

      "What if, Hall wonders, a treatment fails to work not because the drug and the individual are biochemically incompatible, but rather because in some people the drug interferes with the placebo response, which if properly used might reduce disease? Or conversely, what if the placebo response is, in people with a different variant, working against drug treatments, which would mean that a change in the psychosocial context could make the drug more effective? Everyone may respond to the clinical setting, but there is no reason to think that the response is always positive. According to Hall’s new way of thinking, the placebo effect is not just some constant to be subtracted from the drug effect but an intrinsic part of a complex interaction among genes, drugs and mind. And if she’s right, then one of the cornerstones of modern medicine — the placebo-controlled clinical trial — is deeply flawed."

      What if the Placebo Effect Isn’t a Trick?, The New York Times Magazine
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