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  • Message from the Founder - Volunteers and Transparency

    director.pngbrady_tn.jpg

    In January 2005 the Board of Directors chose me as the director of the RRDi, and Warren Stuart as the Assistant Director. In 2010 we were again voted to serve another five years on the board. Warren was instrumental in forming and establishing the RRDi, helping out with our web site and setting up our member forum. Warren also established a sister site relationship with his Rosacea Forum. Sadly, Warren passed away in 2012 (for more info click here). In 2015 I was again voted to serve another five years on the board as director. 

    You might be interested in a more detailed history of the RRDi

    An article was written on why I formed the RRDi. You should carefully investigate the other non profit organizations for rosacea and compare how they are run with the RRDi. The big difference is that this non profit is run with a volunteer spirit by rosacea sufferers. 

    Volunteers
    What other non profit organization for rosacea is run by volunteers? This is the driving force behind this non profit organization for rosacea founded by rosacea sufferers. 

    The one thing you can be sure of is that any donations will NOT be spent on private contractors or salaries at this point since everyone associated with the RRDi are volunteers. This can be done because of the volunteer spirit with which this institute was set up. Can you help? When you join, in the comment box let us know you want to volunteer. If you simply join that would increase our numbers. Any small donation helps us keep going. However, volunteering is what makes this non profit different from the other rosacea non profits (read this post). 

    A database of research suggestions is being accumulated which you may access or make suggestions by clicking here.

    The RRDi is the only non profit that allows rosaceans any say in determining who is on the board of directors. The other non profits are closed board of directors and if you aren't happy with the direction there is nothing you can do about it. Whatever the direction the RRDi takes, whether to research the cause, or the cure, or whatever is done you can at least know that rosaceans had a say into what research the RRDi will engage in. The board of directors have the final say on this.

    Transparency
    We believe in transparency. How the RRDi is run is public knowledge. You can clearly review all our financial records. All the other non profits keep their articles of incorporation a deep secret. Their financial records are cryptically revealed in only an IRS Form 990 report that is confusing and difficult to read. That is a big difference. You have a say if you join and become a corporate member. You can vote who is on the board of directors. Can you do that with any other rosacea non profit organization? I have always felt that rosaceans should have a say in what is being done and not leave that up totally to those who may have their own agenda or leave the decision to private contractors. The MAC at the RRDi is just that; a medical ADVISORY committee. The board of directors who are rosaceans make the final decision on the research and all matters. And if you desire, you as a rosacean, if you join the RRDi as a corporate member, can determine who serves on the board of directors.

    Non Profit Organization

    501 (c) (3) tax-exempt status has been approved by the IRS effective June 7, 2004. With such a legacy, you can see the RRDi is a solid non profit organization for rosaceans you can trust. Please join

    Brady Barrows
    RRDi Founder

     



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  • Posts

    • Rod102988 reports, "A year ago this time I was diagnosed with Rosacea due to heavy drinking and long bouts in the sun. I was devastated, depressed and embarrassed. I quit several jobs, tried makeup, turmeric, eating healthy, water etc. You know name it. I spent hundreds on products for up to a year. I even tried Finacea which while it helped the bumps not so much with the redness plus my insurance didn't cover it and it cost $330 a tube. Finally, I did tons of research online and found two products which I use in combination and they only cost a combined $80 on Amazon.  1) La roche Posay Rosaliac AR Intense. It's a visible redness reducing serum made by scientists in France. It's light and has no smell. You apply twice a day after washing.  2) GIGI Bioplasma Azaleic Acid 15 percent cream. This stuff is better than Finacea IMO and much much cheaper. It tackles all the same things as Finacea; redness, blemishes, acne and hyperpigmenation. Now what I do is usually is place both on at the same time but always one significantly less than the other....only on the problems spots. For example, a full dot full of one and miniscule dot full of the other. But, some may get irritated by that I wouldn't suggest starting off like that. In would initially alternate with one each day and then maybe alternate throughout the day. With that said, this cream and serum has worked wonders and its only costing me $80 bucks a month but I could really stretch both to a month and a half of I want to. After using these for 3 months I am amazed and these combination have been a complete and utter life saver."
    • Found this post at healthboard.com:  "My husband and I both have rosacea. We have used Metrogel daily for years and sometimes it would keep the rosacea under control and other times it would not.
      I researched home remedies and this is what has worked for both of us. We no longer have to go to the dermatologist for an Rx for Metrogel. Please note that this is NOT a cure. We do this daily and then we have no recurrence of the rosacea. When I stopped using it, the rosacea would return after a few weeks. I purchased a 12 ounce bottle of baby shampoo. It doesn't matter what brand as long as it is not too runny like water. Then I bought a 1 ounce bottle of 100% tea tree oil at Trader Joes. It doesn't matter where you buy your bottle of 100% tea tree oil. I poured about 1/3 of the 1 ounce bottle of tea tree oil into the 12 ounce bottle of baby shampoo. I then closed the cap of the baby shampoo and shook it really well.  In the beginning when my rosacea was prevalent, every morning I would put some of the tea tree oil infused baby shampoo on those areas. I would leave it on while I brushed my teeth. I tried to keep it on for at least 5 minutes. Then I would rinse it off. That evening I would do it again and keep it on for at least 5 minutes. Then rinse off. After a few days I saw my rosacea disappear. When I stopped this treatment, the rosacea would ultimately return. So now to keep my rosacea from returning I put on the tea tree oil infused baby shampoo every morning while I brush my teeth. I no longer need to put it on at night as the once daily application has kept my rosacea from returning. It is has been well over a year since the rosacea has resurfaced.  My husband still continues to put his application of tea tree oil infused baby shampoo on twice a day because he gets good results and he doesn't want to chance it returning as his rosacea was far worse than mine. This daily regime has worked for both my husband and I. If you choose to try this, I hope it works for you as well." This probably would help improve demodectic rosacea. 
    • Related Articles An empirically generated responder definition for rosacea treatment. Clin Cosmet Investig Dermatol. 2017;10:347-352 Authors: Staedtler G, Shakery K, Endrikat J, Nkulikiyinka R, Gerlinger C Abstract
      OBJECTIVE: The aim of this study was to empirically generate a responder definition for the treatment of papulopustular rosacea.
      METHODS: A total of 8 multicenter clinical studies on patients with papulopustular facial rosacea were analyzed. All patients were treated with azelaic acid and/or comparator treatments. The severity of rosacea was described by the Investigator Global Assessment (IGA) and the number of lesions. Patients with the IGA score of "clear/minimal" were considered as responders, and those staying in the range of IGA "mild to severe" as nonresponders. The respective number of lesions was determined.
      RESULTS: A total of 2,748 patients providing 12,410 measurements were included. After treatment, responders showed 2.23±2.48 lesions (median 2 lesions [0-3]), and nonresponders showed 13.74±10.40 lesions (median 12 lesions [6-18]). The optimal cutoff point between both groups was 5.69 lesions.
      CONCLUSION: The calculated cutoff point of 5.69 lesions allows discrimination of responders (5 or less remaining lesions) and nonresponders (6 or more remaining lesions) of therapeutic interventions in rosacea.
      PMID: 28932125 [PubMed] {url} = URL to article
    • The relationship between migraine and rosacea: Systematic review and meta-analysis. Cephalalgia. 2017 Jan 01;:333102417731777 Authors: Christensen CE, Andersen FS, Wienholtz N, Egeberg A, Thyssen JP, Ashina M Abstract
      Objective To systematically review the association between migraine and rosacea. Background Migraine is a complex disorder with episodes of headache, nausea, photo- and phonophobia. Rosacea is an inflammatory skin condition with flushing, erythema, telangiectasia, papules, and pustules. Both are chronic disorders with exacerbations of symptoms almost exclusively in areas innervated by the trigeminal nerve. Previous studies found an association between these disorders. We review these findings, provide a meta-analysis, and discuss possible pathophysiological commonalities. Methods A search through PubMed and EMBASE was undertaken for studies investigating the association between all forms of migraine and rosacea published until November 2016, and meta-analysis of eligible studies. Results Nine studies on eight populations were identified. Studies differed in methodology and diagnostic process, but all investigated co-occurrence of migraine and rosacea. Four studies were eligible for meta-analysis, resulting in a pooled odds ratio of 1.96 (95% confidence interval 1.41-2.72) for migraine in a rosacea population compared to a non-rosacea population. Conclusion Our meta-analysis confirmed an association in occurrence of migraine and rosacea. Future studies should specifically investigate possible shared pathophysiological mechanisms between the two disorders.
      PMID: 28920449 [PubMed - as supplied by publisher] {url} = URL to article
    • A recently published paper concluded, "Expert groups and evidence-based guidelines agree that topical retinoids should be considered the foundation of acne therapy." So this article explains the increased use of retinoids by physicians over antibiotics since there is concern over antibiotic resistance. This article states, "The use of retinoids plus BPO targets multiple pathways and can often eliminate the need for antibiotics, reducing the likelihood of antibiotic resistance."

      Isotretinoin is just one of the several retinoids used to treat acne. The retinoids mentioned in the article are, "adapalene 0.1% and 0.3%; tazarotene 0.1%; tretinoin 0.01%, 0.025%, 0.038%, 0.04%, 0.05%, 0.08%, and 0.1% in the USA; isotretinoin 0.05% and 0.1% in other regions of the world" and reviews "the evidence supporting why retinoids should be considered the foundation of acne therapy (with a focus on topical retinoids)." The article states, "Both dermatologists and other physicians were less likely to prescribe a retinoid for patients aged 19 or older compared to those aged 10–19." The topical retinoids mentioned in this article are a "fixed combination adapalene 0.3%-benzoyl peroxide (BPO) 2.5% (0.3 A/BPO; Epiduo Forte®, Galderma Laboratories) and topical retinoids (adapalene, tazarotene, or tretinoin) and Retinoids are also available in fixed-combination formulations with BPO [adapalene-BPO 0.1%/2.5% and 0.3%/2.5% (Epiduo® and Epiduo Forte®, Galderma Laboratories)] and clindamycin [tretinoin 0.025%/clindamycin phosphate 1.2% (Veltin, Aqua Pharmaceuticals; Ziana®, Valeant Pharmaceuticals)]."

      The article does address the concern of "retinoid irritation" and offers "Strategies to minimize tolerability issues" in Table 1 but does not mention anything about long term risks of 'accutane induced rosacea' which many in RF and other anecdotal reports have confirmed happens to some.  Dermatol Ther (Heidelb). 2017 Sep; 7(3): 293–304.
      Published online 2017 Jun 5. doi:  10.1007/s13555-017-0185-2
      PMCID: PMC5574737
      Why Topical Retinoids Are Mainstay of Therapy for Acne
      James Leyden, Linda Stein-Gold, and Jonathan Weiss
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