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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

    • Emily47 at RF (post no 54) reports, "I mixed Afrin and CeraVe (suggested my dermatologist) and it worked! Immediately less redness!" According to Vitacost.com, oxymetazoline hydrochloride, 0.05 percent, the active ingredient in Afrin nasal spray, works by constricting, or shrinking, the blood vessels in the nose, and thereby reducing nasal blood flow. - livestrong.com
    • Fluorouracil (5-FU), aka, Adrucil, Carac, Efudex, Efudix, others, used to treat cancer has the side effect or risk of inflammation of the skin. There are reports that this treatment exacerbates rosacea. Caveat emptor. Thread at RF about this
    • Hello Brady! Greetings from The Black Sea! You are right. The sad true just received in a message from Renee Marie Stephano(president and co-founder of the Medical Tourism Association) yesterday: "During this process, I learned a life lesson that I now know is the dirty little secret of healthcare: the system is rigged. The industries of health are rigged. They are designed for profit, not for people." You said that rosacea sufferers are mostly centered on their own rosacea issues and that is true in case over the years they have not succeeded to control/ manage their rosacea like in your case. The last dermatologist I have seen in Bucharest told me that she has no miracle solutions for me as an example(the last cream that was prescribed to me Anthelios Ultra SPF50+ from Roche Posay was tolarated by my face only six days ending in terrible pains in the skin of the face). Still fighting everyday here. Life is not a fairy tale cause life is real. Going to a Ozone Center for other medical problems and seeing on the website of the best dermatologist in Romania dr Ioan Nedelcu uses laser, IPL and Ozone as terapies to control Rosacea (http://drnedelcuioan.ro/servicii-medicale/dermatologie-consultatii-tratamente/cuperoza-rozacee) I asked the owner and doctor of the Ozone Center if I can make cosmetic injections with ozone. She told me will not be a good ideea and the best thing to do is to try ozonated olive oil (a brevet that belongs to Nikolai Tesla from 1904. Here is the product recommended http://www.rheumapraxis-altstetten.com/en/oxaktiv-cosmetic-eng) and I am in the day forth(till now is more than all right but on my face no cream passed the test of more than 12 consecutive days. I am praying here that this time to be the lucky one) and counting, hoping for a solution. I tried to search on our website ozone therapy and ozonated oils and there is no article and no information about it (I wish I was the one writting it). There is an article here https://www.amaskincare.com/how-to-get-rid-of-rosacea-top-treatments saying that: "#4 WAY OF HOW TO GET RID OF ROSACEA – THE MAGIC OF OZONE One natural remedy stands alone among the myriad of other natural therapies, both in its therapeutic effectiveness and the enormous amount of scientific study dedicated to its clinical use. Ozone. Ozone is a completely natural element readily found in nature and that can be generated in a pure form for medical use. It is a form of oxygen (O3) that has tremendous capacity to stimulate healthy physiological activity in every organ system of our bodies, all the way down to the level of individual cells. There is so much therapeutic value to its clinical use, that I will dedicate a series of articles about Ozone Therapy. For now, know this. Infused into natural oils such as olive oil and sunflower oil, topical use of these “ozonated” oils is safe, easy, and extremely effective to use as a rosacea treatment. In our experience, clinical protocols that combine the use of ozonated oil with laser treatments is the single most effective way of how to get rid of rosacea." From whom can we know for sure that ozonated olive oil and sunflower oil are good for Rosacea??? The guys from PureO3(http://shop.puro3.com) told me that ozonated jojoba and coconut oils are also good for Rosacea. Also I wish I could try and afford to buy the LaFlore Probiotic Concentrated Serum recommended by dr.  Whitney Bowe  here https://www.allure.com/gallery/probiotics-skin-care-products but the prices are beyond my current financial possibilities(https://laflore.com/shop-retail). Take care.  PS: I will have a look at your diet as in my case no salt, no sugar products, no dairy products, no cereals, nothing made and difference. So the only diet remained to try is a diet without food.   
    • Elucidating the role of Demodex folliculorum in the pathogenesis of rosacea: exciting first steps…. Br J Dermatol. 2018 Jul 19;: Authors: Forton FMN PMID: 30024649 [PubMed - as supplied by publisher] {url} = URL to article
    • How do you know if you are reading fake rosacea news?  Or what if you read about a certain rosacea treatment whether topical or oral? Can you trust the reviews from the web site? Who would you trust to substantiate a news item about rosacea? Maybe your physician? A social media site?  How about a non profit organization for rosacea patient advocacy? How do you produce a watchdog (a rosacea Snopes) who can substantiate a rosacea news item or weed out a fake reviewer and expose the bum is lying about a rosacea treatment? The RRDi is one of best sources of rosacea data to compare rosacea news items with fake or with what's really a trusted source on any news item about rosacea and is the only non profit organization for rosacea patient advocacy. The other non profit organizations for rosacea are not founded by rosacea sufferers and have a different rosacea agenda. Just follow the money how any non profit organization for rosacea spend the donations and you will see what the agenda is all about. Is the spending 60% of the donations on private contractors owned by the director of the non profit the main agenda? Is most of the spending of more than 75% of the donations on 'annual and mid-year meetings' for the professional members of the non profit the main agenda?  Follow the money.  Read an interesting tech article related to fake news at wired, SHADOW POLITICS: MEET THE DIGITAL SLEUTH EXPOSING FAKE NEWS by BY ISSIE LAPOWSKY, about how media scholar Jonathan Albright discovered through endless hours of research how the the world's biggest internet platforms were riddled with fake news. This inspired me to comment on all the data I have collected (basically just about everything at this web site has been collected by me, there may be a small percentage of posts adding some new information from RRDi members, and it would take me a number of hours to give you the math on this, which really isn't important at all at this point, you will simply have to trust me on this until proven otherwise) on rosacea trying to put them into logical categories in the forum and the affiliate store. I have tried unsuccessfully so far to attract some kindred spirits to help me in this endeavor but alas, what I have found is most rosacea sufferers are mostly centered on their own rosacea issues, whether it is rosacea or some other rosacea mimic, and simply will not volunteer to help make the RRDi's mission come true. It is very sad. 14 years ago when the RRDi was founded, there were quite a number of impassioned volunteers who assisted me in this endeavor but they are now mostly faded away. Where have all the volunteer rosaceans volunteer gone? Where is a passionate rosacea volunteer with a spirit like Jonathan Albright to be found? Alas, such volunteer rosaceans are slim to none.  The reason I am writing this post is that after reading how Jonathan Albright's passionate hours and hours of researching to discover how fake news was being spread through all the internet platforms, making a detailed map, which without a doubt took more hours to make, it has inspired me to explain that I have spent endless hours putting the RRDi together and basically this web site and all the rosacea data collected is the Crown Jewels. The RRDi MAC is definitely a close second (you try to bring together some noted rosacea professionals into a group). Third, the Internal Revenue Service approval as a 501 c 3 approved non profit organization (along with the non profit approval from the State of Hawaii) is the last crowning achievement.  I am now sixty eight years old. I have my rosacea controlled and have updated my regimen here. So I am seeing the hand writing on the wall, since who is going to take over the RRDi if I croak?  Basically, if someone doesn't have the kind of passion I have had for this mission and steps up the plate, the RRDi is going to fade away and all you have left is the NRS and the AARS. Is that what you really want to happen?  So think about what I am telling you and please comment in this thread what you think should be done about this? Just think if there is no RRDi, no real legal non profit organization for rosacea patient advocacy, and all you have left are the two non profit organizations mentioned above who are set up by NON ROSACEANS and whose donations are from primarily pharmaceutical corporations who have a vested interest in promoting skin products and who spend little (compared to how much money is donated) on rosacea research?  So if the RRDi fades out of existence and you do nothing about this, is that the way you want it to go?   What rosacea news is the NRS and AARS spreading?  Both non profits clearly state on their websites that pharmaceutical companies are sponsors. What is the agenda when posting information about rosacea? What is the agenda of spending the donations mainly on what?  Dr. Kligman mentions the 'indifference of the National Institutes of Health, which with an annual budget of nearly 30 billion dollars, has not seen fit to fund a single grant for the investigation of rosacea.' Dr. Kligman also says that most research done on rosacea is by the skin industry which is 'voluminous literature, mainly focused on treatments sponsored by commercial interests; perhaps not the most credible source of unbiased research.' ” A Personal Critique on the State of Knowledge of Rosacea, Albert M. Kligman, M.D., Ph.D.
      Department of Dermatology, University of Pennsylvania, Philadelphia, PA, U.S.A.
      publikation_kligman.pdf  Why not join the RRDi, volunteer, help find the cure and expose rosacea fake news?
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