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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

    • The RRDi has been using Invision Community forum platform since 2004. When we started in 2004 it was recommended by Warren Stuart who was the assistant director of the RRDi to use what was then called Invision Power Services (later the name was changed to Invision Community). It is a powerful platform with many add-on features and a significant number of developers adding plugins and additional features to the platform. However, with the advent of mobile devices and social media platforms the trend has focused on mobile apps using iOS and Android devices found in the Apple App Store and Google Play Store. The popularity of using these apps over using a browser to view a website has increased the use of social media platforms such as Reddit, Facebook, Instagram, Twitter, etc. The developers and owners of the Invision Community platform have now announced beta versions of iOS and Android apps for their platform which has been embedded for years using only a web browser, so we have announced with this post here asking for volunteers to download the beta versions and help test these new apps. Please consider volunteering and using these beta versions of the apps.  Invision Community Clients There are some significant clients who use Invision Community as their platform which you can see below:  Medical Clients Who Use Invision Community Platform
    • Amelioration of Compound 48/80-Mediated Itch and LL-37-Induced Inflammation by a Single-Stranded Oligonucleotide. Front Immunol. 2020;11:559589 Authors: Dondalska A, Rönnberg E, Ma H, Pålsson SA, Magnusdottir E, Gao T, Adam L, Lerner EA, Nilsson G, Lagerström M, Spetz AL Abstract Numerous inflammatory skin disorders display a high prevalence of itch. The Mas-related G protein coupled receptor X2 (MRGPRX2) has been shown to modulate itch by inducing non-IgE-mediated mast cell degranulation and the release of endogenous inducers of pruritus. Various substances collectively known as basic secretagogues, which include inflammatory peptides and certain drugs, can trigger MRGPRX2 and thereby induce pseudo-allergic reactions characterized by histamine and protease release as well as inflammation. Here, we investigated the capacity of an immunomodulatory single-stranded oligonucleotide (ssON) to modulate IgE-independent mast cell degranulation and, more specifically, its ability to inhibit the basic secretagogues compound 48/80 (C48/80)-and LL-37 in vitro and in vivo. We examined the effect of ssON on MRGPRX2 activation in vitro by measuring degranulation in a human mast cell line (LAD2) and calcium influx in MRGPRX2-transfected HEK293 cells. To determine the effect of ssON on itch, we performed behavioral studies in established mouse models and collected skin biopsies for histological analysis. Additionally, with the use of a rosacea mouse model and RT-qPCR, we investigated the effect on ssON on LL-37-induced inflammation. We reveal that both mast cell degranulation and calcium influx in MRGPRX2 transfected HEK293 cells, induced by the antimicrobial peptide LL-37 and the basic secretagogue C48/80, are effectively inhibited by ssON in a dose-dependent manner. Further, ssON demonstrates a capability to inhibit LL-37 and C48/80 activation in vivo in two mouse models. We show that intradermal injection of ssON in mice is able to block itch induced via C48/80 in a dose-dependent manner. Histological staining revealed that ssON inhibits acute mast cell degranulation in murine skin treated with C48/80. Lastly, we show that ssON treatment ameliorates LL-37-induced inflammation in a rosacea mouse model. Since there is a need for new therapeutics targeting non-IgE-mediated activation of mast cells, ssON could be used as a prospective drug candidate to resolve itch and inflammation in certain dermatoses. PMID: 33101278 [PubMed - in process] {url} = URL to article
    • * Artificially Sweetened Drinks "Records for 104,760 participants were included....Artificially sweetened beverages were defined as those containing non-nutritive sweeteners. Sugary drinks consisted of all beverages containing 5% or more sugar....Researchers looked at first incident cases of cardiovascular disease during follow-up from 2009-2019, which were defined as stroke, transient ischemic attack, myocardial infarction, acute coronary syndrome and angioplasty. After excluding the first three years of follow-up to account for potential reverse causality bias, 1,379 participants had first incident cases of cardiovascular disease. Compared to non-consumers, both higher consumers of sugary drinks and of artificially sweetened beverages had higher risks of first incident cardiovascular disease, after taking into account a wide range of confounding factors..." Artificially sweetened drinks may not be heart healthier than sugary drinks, Medical Xpress, October 27, 2020, research letter in the Journal of the American College of Cardiology,  Sugar Any Better? "Drinking one or more sugary beverages a day was associated with a nearly 20% greater likelihood of women having a cardiovascular disease compared to women who rarely or never drank sugary beverages, according to new research published today in the Journal of the American Heart Association, an open access journal of the American Heart Association." California study finds drinking sugary drinks daily may be linked to higher risk of CVD in women, Medical Xpress, May 13, 2020, by American Heart Association Research on Sugar Beverages Triggering Rosacea Do you think it is possible for a non profit organization for rosacea get its members to each donate one dollar to investigate whether or not sugar beverages or artificially sweetened drinks are a rosacea trigger in a double blind, placebo controlled, peer reviewed clinical study? It would take approximately 10K members to do this if the members wanted this. What do you think? Have you noticed whether drinking a sugar beverage triggers your rosacea? *Image credit CCO public domain
    • 13 Variants of Rosacea The RRDi recognizes these thirteen variants of rosacea:  Demodectic Rosacea  Gastrointestinal Rosacea [GR], aka, Gut Rosacea Glandular Rosacea  Granulomatous Rosacea Halogen rosacea  Idiopathic facial aseptic granuloma (IFAG)  Neurogenic Rosacea  Pyoderma Faciale  Rosacea Conglobata  Rosacea Fulminans  Rosacea Lymphedema (Morbihan Disease) Rosacea Perioral Dermatitis [RPD] Steroid Rosacea [Facial corticosteroid addictive dermatitis] (FCAD) Etcetera Variant vs Subtype vs Phenotype
    • A new article on the pathophysiology of rosacea overlaps with demodectic rosacea and the phenotype classification. Below are the three highlights considered in the paper:  (1) New hypotheses to explain how Demodex mites may control host immunity, by analogy with what happens in tumor pathology: inducing tolerogenic dendritic cells through their Tn Ag, and diverting the body's defence reaction by exploiting the immunosuppressive properties of VEGF;  (2) Leading to consider rosacea not as a disease of the innate immunity, but as a chronicle infection by Demodex with T cell exhaustion; Highlighting of the ambiguities of the current definition of rosacea of the NRS, and the overlap with demodicoses, suggesting that all these dermatoses are different phenotypes of the same disease; (3) The suggestion, for the dermatologists, to learn to detect the demodicoses among the patients with persistent erythema, in the aim to treat at least these patients with topical acaricidal treatment. The article concludes, "The interactions among VEGF, Demodex, and the immune system need further exploration and the nosology of rosacea would then need to be adapted accordingly. The effectiveness of treating any patient with ETR first with an acaricidal cream needs to be assessed in prospective controlled clinical trials with long-term follow-up. Currently, learning to distinguish patients with pityriasis folliculorum from those with isolated ETR is crucial so that they can be managed appropriately with an acaricidal cream." [1] [1] Forton, F.M.N. The Pathogenic Role of Demodex Mites in Rosacea: A Potential Therapeutic Target Already in Erythematotelangiectatic Rosacea?. Dermatol Ther (Heidelb) (2020). https://doi.org/10.1007/s13555-020-00458-9 Image courtesy of Dermatology and Therapy
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