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  • Message from the Founder - Volunteers and Transparency

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    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

    • A paper in 2017 continues to explain the quandary. "Many studies have shown higher density of the parasites in diseased inflammatory skin than in normal skin, but whether it is the cause or result of the inflammation remains unclear." [6]  A paper in 2018 may help to resolve this issue because for the first time it has been discovered that Demodex mites secrete bioactive molecules that reduced TLR2 expression in sebocytes. [7] So while the jury is still out on this subject, What do you think?  Which comes first, the demodex or the rosacea? Does it even matter? With your above statement I highlighted and giving my view on this topic which comes first, I am also stating the same thing that I think demodex came first well it is not experiment or evidence based but with the experience I have had. Human Permanent Ectoparasites; Recent Advances on Biology and Clinical Significance of Demodex Mites: Narrative Review Article With this journal which you quoted in your article , "Many studies have shown higher density of the parasites in diseased inflammatory skin than in normal skin, but whether it is the cause or result of the inflammation remains unclear." So I was elaborating this sentence that higher density might be the result of inflammation (inflammatory immune response) and then subsequently the cause of inflammation. So I explained this with the term “reciprocal correlation”. And let’s say if the higher density is the result of inflammation, so the altered cutaneous immune responses are the cause of persistent inflammation and that is what I was trying to state in my post but then I read the above journal in detail after your question and I found the confirmation of my  expression with these sentences of journal   “ Studies indicate increased number of D. folliculorum in immunocompromised patients”  and “It remains to be determined which kind of cellular immunity may foster mites’ proliferation” and my statement “the false immune response(altered immune response) might be the cause of increasing number of demodex”  state the same thing. Thank you for questions because what I was stating is experience based but after thoroughly reading the reference journals from your article I found the confirmation of the same thing.    
    • That is difficult to follow. In a paper by Powell, et al, it is stated that the mites "secrete bioactive molecules that reduced TLR2 expression in Sebocytes." The 'bioactive molecules' that the mites secrete keep the innate immune system from reacting to the mites when in normal numbers on normal skin, so my question is what causes the demodex to proliferate in greater numbers to what you say,  "cause inflammatory immune response and inflammatory immune response" ?   Could you better explain what you mean by "self-antigen presentation to immune cells rather than non-self which is false immune response? ?
    • In my view, normal skin also has demodex mites but less in number so they can't activate pro-inflammatory cytokines but when the number is more they activate it. so logically when the normal skin flora has demodex before rosacea has occured so demodex apparently came first and because demodex mites cause inflammatory immune response and inflammatory immune response is not just related to mites but self-antigen presentation to immune cells rather than non-self which is false immune response or we call it autoimmune response and attacks to healthy cells and so the false immune response might be the cause of increasing number of demodex .So demodex and rosacea have reciprocity with each other to increase its effects and outcomes.
    • While it has been reported that topical ivermectin has better results than topical metronidazole, there is a paper you should consider reading if you are considering taking oral ivermectin and metronidazole.  A paper published by the International Journal of Infectious Diseases that compared taking 200 micro-grams Ivermectin per Kilogram of body weight of oral ivermectin once a week in one group (1) of sixty rosacea patients with another group (2) of sixty rosacea patients who received a combined therapy of the same amount of ivermectin along with 250 mg of oral metronidazole three times a day. The results were that the second group improved better than the first group. For more information Some may concerned about taking ivermectin orally. It is interesting to note that ivermectin has been around since the late 1970s and half "of the 2015 Nobel Prize in Physiology or Medicine was awarded jointly to Campbell and Ōmura for discovering avermectin, 'the derivatives of which have radically lowered the incidence of river blindness and lymphatic filariasis, as well as showing efficacy against an expanding number of other parasitic diseases' " Wikipedia Ivermectin is "a dihydro derivative of avermectin—originating solely from a single microorganism isolated at the Kitasato Intitute, Tokyo, Japan from Japanese soil...originally introduced as a veterinary drug...has led many to describe it as a “wonder” drug....few drugs that can seriously lay claim to the title of ‘Wonder drug’, penicillin and aspirin being two that have perhaps had greatest beneficial impact on the health and wellbeing of Mankind....But ivermectin can also be considered alongside those worthy contenders, based on its versatility, safety and the beneficial impact that it has had, and continues to have, worldwide—especially on hundreds of millions of the world’s poorest people....Despite decades of searching around the world, the Japanese microorganism remains the only source of avermectin ever found. Originating from a single Japanese soil sample and the outcome of the innovative, international collaborative research partnership to find new antiparasitics, the extremely safe and more effective avermectin derivative, ivermectin, was initially introduced as a commercial product for Animal Health in 1981." [1] While there are no long term clinical studies done on ivermectin use with rosacea, there are papers showing the long term effects of oral ivermectin in school-age and pre-school children treated for helminths. [2] There are also papers written about the long term effects of treating humans with ivermectin on other parasites.  'Intriguingly, IVM has a diverse range of effects in many different organisms, far beyond the endoparasites and ectoparasites it was developed to control. For example, IVM has been shown to regulate glucose and cholesterol levels in diabetic mice, to suppress malignant cell proliferation in various cancers, to inhibit viral replication in several flaviviruses, and to reduce survival in major insect vectors of malaria and trypanosomiasis. Clearly, much remains to be learned about this versatile drug, but the promise of more sustainable strategies for current helminth-control programmes and novel applications to improve and democratise human health, are compelling arguments to pursue this cause." [3] With the craze of rosaceans using horse paste to treat rosacea topically, there is one report of oral horse paste treatment for Lyme disease in Facebook by a poster. [4] So there are a substantial number of humans globally who have taken oral ivermectin.  More information on oral ivermectin. ElaineA has a post worth reading on this subject, Oral Ivermectin, getting diagnosed and a prescription. End Notes [1] Proc Jpn Acad Ser B Phys Biol Sci. 2011 Feb 10; 87(2): 13–28. doi: 10.2183/pjab.87.13 PMCID: PMC3043740; PMID: 21321478 Ivermectin, ‘Wonder drug’ from Japan: the human use perspective Andy CRUMP and Satoshi ŌMURA [2] PLoS Negl Trop Dis. 2008 Sep; 2(9): e293. Published online 2008 Sep 10. doi: 10.1371/journal.pntd.0000293 PMCID: PMC2553482; PMID: 18820741 Impact of Long-Term Treatment with Ivermectin on the Prevalence and Intensity of Soil-Transmitted Helminth Infections Ana Lucia Moncayo,  Maritza Vaca,  Leila Amorim,  Alejandro Rodriguez,  Silvia Erazo,  Gisela Oviedo,  Isabel Quinzo,  Margarita Padilla,  Martha Chico,  Raquel Lovato,  Eduardo Gomez,  Mauricio L. Barreto,  and Philip J. Cooper   [3] Trends in Parasitology Volume 33, Issue 6, June 2017, Pages 463-472 Ivermectin – Old Drug, New Tricks? Roz Laing. Victoria Gillan. Eileen Devaney [4] Post number five in this thread
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