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  • History of the RRDi


    There was a post at a Yahoo group in  November 23, 2002 that started the idea of making a non profit organization for rosacea sufferers to collaborate together. 

    The Rosacea Research & Development Institute began as an idea by the founder, Brady Barrows, on November 23, 2002 when he founded the following yahoo group:

    http://health.groups.yahoo.com/group/international-rosacea-society/

    The above yahoo group was changed on July 24, 2004 to:

    http://health.groups.yahoo.com/group/irosacea/

    And then later changed on February 14, 2005 to this yahoo group:

    http://health.groups.yahoo.com/group/rosacea-research/

    The above yahoo group was deleted June 7, 2006 since the private forum for corporate members began in April/May 2006.

    A need for a non-profit organization that heard the voice of rosaceans suffering from this disease was seen early on and discussion continues to this day. Upon moving to Hawaii the founder discovered that forming a non-profit organization in this state would be simpler than in other states and applied for approval as a non-profit corporation. A Charter was set up. The non profit recognition was approved on June 7, 2004 by the State of Hawaii and after a lengthy period, tax-exempt approval as a 501 (c) (3) non profit organization was obtained by the IRS in January 2006 and recognition was effective back to June 7, 2004. This process took over a year and a half. More details of all this are written in the article Why Form Another Non Profit Organization For Rosacea?

    The Board of Directors were chosen by the corporation members and the officers were appointed in January 2005. More board members were added in 2006 and later.

    The web site is constantly being improved by volunteers. Volunteers are seeking funding and you can join us to seek corporate donations, seek grants, or find the best minds to join the RRDi MAC, the only medical advisory committee volunteering to find a cure for rosacea, listen to corporate RRDi members' concerns and advise the board of directors on the direction the RRDi should go. Several private member forums were experimented which have not proven popular. For a number of years the RRDi recommended Warren Stuart's www.rosaceagroup.org as the public forum and volunteers have made the private forum for corporate members on the irosacea.org web site. To use the private forum you must join the RRDi. This private corporate member forum is where decisions are discussed. The private forum can be found at this url:

    http://irosacea.org/forums

    Steve Andreessen spent many volunteer hours on not only the above IPB forum (now called Invision Community)  but also our web site. Warren Stuart has also spent many hours volunteering on the web site as well. Under Warren's direction we purchased the Invision Power Services forum (now called Invision Community). Sadly, Warren Stuart passed away. David Pascoe took over Warren's Rosacea Forum. The focus of the RRDi for years has been to gather together the best minds on rosacea into the RRDi Medical Advisory Committee, gathering volunteers to raise public awareness of the RRDi in the Public Relations Committee and to increase RRDi membership, and finally to increase funding through volunteer efforts in the Funding Committee by volunteers. You can see the results of all this volunteer effort and you can become part of it by joining with just an email address. You may want to read the Message from the Founder and our post about Anonymity, Transparency and Posting before joining.

  • Posts

    • image courtesy of Cognitune "Turmeric can even help prevent acne, cancer, allergies, diabetes, joint pain, and depression." 10 Health Benefits and Uses for Turmeric Curcumin Supplements, Cognitune Smarter Health
    • RedMage, 
      This paper is not a double blind, placebo controlled study on rosacea and diet. As it explains, it was "collected by standardized questionnaires." So the results are based upon anecdotal reports, and none of these 'patients with rosacea' were in a clinical laboratory with controls on what they ate and drank. They simply answered questions on a form. How can anyone be sure that the patients answered correctly or omitted pertinent data?  While the data collected may be helpful, since there are rarely any papers on diet and rosacea, at least they have made an attempt at the task which is monumental, and the paper is interesting, to say the least.   So when the report says "high-frequency dairy product intake showed negative correlations with ETR and papulopustular rosacea" does it differentiate between ice cream with heavy amounts of sugar or just plain heavy cream without sugar?  There is a big difference. If you took one hundred rosaceans and had them just eat heavy cream for a week and see the results with another group that just ate ice cream for a week you might notice differences. Or compare one hundred rosaceans eating just cheese for a week with a group of a hundred rosaceans who just eat milk shakes.  As for the fatty food and tea, again, there really aren't any controls, and the data could be biased since it is anecdotal. Possibly the one good item about this report is that it may stimulate more papers on diet and rosacea. Most rosaceans have a gut feeling about their rosacea, while other rosaceans report that diet has no effect on their rosacea.  A real clinical study on rosacea and diet hasn't been done yet. Wouldn't it be something if a non profit organization for rosacea patient advocacy could get 10,000 rosacea sufferers together into one group and conduct their own research (say each one donated $1) on diet and rosacea. 
    • Does it mean that for ETR we should eat dairy based food and cut any fatty food and tea?    
    • Related Articles Botulinum toxin blocks mast cells and prevents rosacea like inflammation. J Dermatol Sci. 2018 Dec 28;: Authors: Choi JE, Werbel T, Wang Z, Wu CC, Yaksh TL, Di Nardo A Abstract
      BACKGROUND: Rosacea is a chronic inflammatory skin condition whose etiology has been linked to mast cells and the antimicrobial peptide cathelicidin LL-37. Individuals with refractory disease have demonstrated clinical benefit with periodic injections of onabotulinum toxin, but the mechanism of action is unknown.
      OBJECTIVES: To investigate the molecular mechanism by which botulinum toxin improves rosacea lesions.
      METHODS: Primary human and murine mast cells were pretreated with onabotulinum toxin A or B or control. Mast cell degranulation was evaluated by β-hexosaminidase activity. Expression of botulinum toxin receptor Sv2 was measured by qPCR. The presence of SNAP-25 and VAMP2 was established by immunofluorescence. In vivo rosacea model was established by intradermally injecting LL-37 with or without onabotulinum toxin A pretreatment. Mast cell degranulation was assessed in vivo by histologic counts. Rosacea biomarkers were analyzed by qPCR of mouse skin sections.
      RESULTS: Onabotulinum toxin A and B inhibited compound 48/80-induced degranulation of both human and murine mast cells. Expression of Sv2 was established in mouse mast cells. Onabotulinum toxin A and B increased cleaved SNAP-25 and decreased VAMP2 staining in mast cells respectively. In mice, injection of onabotulinum toxin A significantly reduced LL-37-induced skin erythema, mast cell degranulation, and mRNA expression of rosacea biomarkers.
      CONCLUSIONS: These findings suggest that onabotulinum toxin reduces rosacea-associated skin inflammation by directly inhibiting mast cell degranulation. Periodic applications of onabotulinum toxin may be an effective therapy for refractory rosacea and deserves further study.
      PMID: 30658871 [PubMed - as supplied by publisher] {url} = URL to article
    • Related Articles Sarecycline: First Global Approval. Drugs. 2019 Jan 18;: Authors: Deeks ED Abstract
      Sarecycline (Seysara™) is an oral, once-daily, tetracycline-class drug for which a tablet formulation is approved in the USA for the treatment of inflammatory lesions of non-nodular moderate to severe acne vulgaris in patients aged ≥ 9 years. The drug was developed by Paratek and Allergen and later acquired by Almirall S.A. (a Barcelona-based pharmaceutical company focused on medical dermatology). Sarceycline tablets were approved in early October 2018 and are planned to be available for patients in January 2019. Sarecycline capsules have also been studied in the USA, but no recent reports of development have been identified for this formulation. There are currently no clinical trials underway assessing sarecycline in rosacea. This article summarizes the milestones in the development of sarecycline leading to this first approval for the treatment of inflammatory lesions of non-nodular moderate to severe acne vulgaris.
      PMID: 30659422 [PubMed - as supplied by publisher] {url} = URL to article
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