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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. Same for 2015 and in 2020. 

    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).

    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, a grassroots, patient advocacy effort. The other non profit organizations for rosacea are run by non rosaceans who are businessmen and dermatologists. 


    Volunteers
    This is the driving force behind this non profit organization for rosacea founded by rosacea sufferers. For more information

    Spending
    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). 

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

    Who Serves on the Board of Directors
    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. While the board of directors have the final say on this, you can change who serves on the board of directors who are all rosacea sufferers. Try doing this with the other non profit organizations for rosacea. 

    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. This means your donation is tax deductible. 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

    • As a medical assistant for a dermatologist I worry about the added fragrance in the baby shampoo causing further irritation. 
    • I work as a medical assistant for a dermatologist. I definitely think it is a possibility for rosacea to through periods of remissions and flare-ups. This can be due to environmental factors as well as psychological factors. 
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    • This question has come up at RF whether Finasteride or Minoxidil causes flushing or may be a rosacea trigger and you may be interested in knowing that apparently there isn't any consensus on this and these two drugs haven't been listed on any rosacea trigger list as far as we know. If you have anything to add to this or your experience using either of these treatments with your rosacea, please find the reply to topic button.  For more information 
    • Related ArticlesResolution of Refractory Corneal Neovascularization with Subconjunctival Bevacizumab. Case Rep Ophthalmol. 2020 Sep-Dec;11(3):652-657 Authors: Britton AK, Crayford BB Abstract Corneal neovascularization (CNV) has a variety of causes and threatens corneal clarity, thus optimal visual acuity. Conventional medical management includes topical steroids and matrix metalloproteinase inhibitors like doxycycline. Anti-vascular endothelial growth factor (anti-VEGF) agents have demonstrated promise but remain off-label for this indication. However, these agents hold value in cases refractory to first-line medical management. We report the case of a 63-year-old woman who presented with ocular rosacea and CNV affecting vision, on a background of acne rosacea. She was initially treated with fluorometholone and doxycycline, yet continued to deteriorate. Eventually she received two 1.5-mg subconjunctival injections of bevacizumab 2 months apart. CNV completely resolved and results were maintained at 4-year follow-up. This case demonstrates that refractory CNV can be effectively treated with subconjunctival injection of anti-VEGF bevacizumab. The resolution of CNV was also maintained years after injection with minimal adjunctive therapy during this period, and to our knowledge there are no other studies reporting a follow-up period of 4 years after treatment. This is a pertinent case for other clinicians treating patients in a similar situation. PMID: 33442379 [PubMed] {url} = URL to article
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