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  • Why Form Another Non Profit for Rosacea Sufferers?

    What do you expect from a non profit organization for rosacea? Should the administrators and founders of the non profit organization use most of the donations to pay private contractors that are owned by the director of the non profit organization?

      by Brady Barrows, Founder, RRDi

      The chief reason I formed the RRDi was when I began investigating how the National Rosacea Society (NRS) spends its donated funds (60%) on private contractors spending about 10% for rosacea research. However, the sad reality is that most rosacea sufferers could care less how the NRS spends its donations. If they did they would do something about this. If you do care, why not read the facts below: 

      On average over many years, the NRS spends approximately 10% to 11% on rosacea research while receiving in donations millions of dollars. To put that in terms you can easily understand, for every dollar the NRS receives in donations 10 cents is spent on rosacea research. The rest goes mostly, over 60%, to private contractors that are owned by the president/director of the NRS, Sam Huff. 

      The NRS is a 501 c 3 non profit organization. Many are unaware that all non profits who make $50,000 or more in a year are required to file Form 990 with the Internal Revenue Service of the USA which is then public knowledge for anyone to read. In the past Form 990 has not required disclosure of who donated the funds (however in 2015 there was a notable change about disclosure of donated funds) however, the non profit organization is required to show the percentage of funds from the public or whether the funds are private donations. Several years ago I began reading the Form 990 that the NRS reports and was shocked at how the funds were spent. I encourage you to read all these Form 990 reports that the NRS files with the IRS.

      For instance, in 1998 the NRS received in donations $1,148,375 (over a million dollars!). Of this, only 2.15% of this amount was from the public while 97.85% of this amount came from pharmaceutical companies. Of this total amount the NRS spent only $16,118 (1.5%) on rosacea research. [1] That means that for every dollar donated in 1998 only 1.5 cents was spent that year on rosacea research. To put this in a visual graph see below:
      1998NRSdonationsexpenses.png
      The total expenses that year were $830,856 of which $516,156 (62%) was spent on one private contractor, Sam Huff and Associates. Sam Huff is the director of the NRS. At the time, I thought $1.1 million dollars could be better spent. Why wasn't $1 million spent on rosacea research and the rest on running the organization? I thought rosacea sufferers could do a lot better with donated funds than how the NRS has been spending donated funds. This was the first Form 990 that I read and it knocked my socks off. Are you not shocked as well? Read the NRS Form 990 for 1998 yourself if you have doubts.

      I then discovered a lot about non profits by educating myself on how they work. For example, I learned that many non profit organizations spend very little on their 'mission' and give huge amounts of donated funds to the directors, salaried employees, or to private contractors. For more information on this, read Comparing Non Profit Organizations with Research.

      It is not easy to form a non profit organization. The IRS has made it quite difficult to obtain the 501 c 3 recognition. Basically non profits can organize just about any way they want but getting the IRS to recognize and approve a non profit is another matter that would take too many paragraphs to explain. However, I was able to form the RRDi and get the IRS to approve our non profit and have the recognition letter to prove it. However running a non profit with total volunteers is another matter that is something to write about later. Back to the NRS. I kept following how the NRS spends its donated funds as a non profit.

      The pattern of the NRS since 1998 has been basically the same. 1998 was the only year that the NRS spent only 1.5% on rosacea research. The years since that banner year of 1998 when the NRS received over $1.1 Million US Dollars the NRS has decided to up the money on rosacea research from 1.5% to about 10% on average. Whatever the amount donated the total spending on rosacea research remains about 10 per cent on average after that banner year of 1998. It should be noted that during this same period around 60% of the donations is spent to private contractors owned by Sam Huff, director of the NRS. From 2001 on, the name of the private contractor was changed to Glendale Communications Group, Inc., owned by Sam Huff, and Park Mailing and Fulfillment, Inc., also owned by Sam Huff (view screenshots of the Illinois corporate lookup search results). Most of those years the NRS spent about 10% of its total donations each year on rosacea research. That means that for every dollar donated to the NRS about ten cents is spent on rosacea research. On average for many years around 60% of the donated funds are spent on private contractors owned by the director of the NRS. [2]

      My posts and comments about the NRS for succeeding years are listed in the end notes. [3]

      Brady Barrows RRDi Director

      End Notes

      [1] NRS Form 990 for 1998

      [2] NRS Form 990 Spreadsheet 1998 thru 2016

      [3] My post and comment on how the NRS spent donations in 2013 can be read by clicking here.

      My post and comment on how the NRS spent donations in 2014 can be read by clicking here.

      My post and comment on how the NRS spent donations in 2015 can be read by clicking here.

      My post and comment on how the NRS spent donations in 2016 can be read by clicking here.

       

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      • 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
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      • 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?
      • If others don't volunteer and work together for rosacea patient advocacy then rosaceans deserve what they get with the NRS and the AARS which are the only non profits doing any rosacea research. And what kind of research do these organizations do? Who donated primarily to the these organizations? Pharmaceutical companies. And what kind of research do they engage in? You guessed it. Here is a quote from my book I wrote in 2007 on page 82: 

        "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
      • In this study, significant cardiovascular disease risk factors such as a family history of premature cardiovascular disease, obesity, prediabetes and high C-reactive protein levels were found to be higher in rosacea patients than controls. Although the underlying mechanism is not clear, it is thought that chronic inflammation and disregulation of innate immune system increase risk of cardiovascular disease in rosacea patients. The American Journal of Cardiology
        Volume 121, Issue 8, Supplement, 15 April 2018, Page e106
        OP-264 - Investigation of Cardiovascular Risk Factors in Rosacea Patients
        Muhammed Karadeniz
      • Highlights of Skin Disease Education Foundations 42nd Annual Hawaii Dermatology Seminar. Semin Cutan Med Surg. 2018 Jun;37(4S):S75-S84 Authors: Baldwin HE, Stein Gold LF, Gordon KB, Green JB, Leonardi CL, Sengelmann RD Abstract
        Updates on managing some of the most common dermatologic conditions for which patients seek care illuminated presentations at the Skin Disease Education Foundation's 42nd Annual Hawaii Dermatology Seminar®. This educational supplement summarizes the highlights of clinical sessions presented during this CME/CE conference. Treatment of psoriasis has continued to advance, with three interleukin (IL)-17 antagonists approved by the US Food and Drug Administration (FDA) and a fourth in phase 3 trials. An authority on the use of biologics in psoriasis presents current data on the safety and efficacy of these therapies. Tumor necrosis factor (TNF) inhibitors also retain a place in the management of psoriasis, with records of long-term safety. A fourth TNF inhibitor awaits FDA approval for use in psoriasis, offering data on transmission during pregnancy and lactation. An expert on the use of this drug class presents the evidence. Topical therapies remain the cornerstone of care for many patients with psoriasis as well as those with rosacea. Our faculty update readers about new and investigational topical therapies for moderate or severe psoriasis, as well as for acne and rosacea. The current literature on monitoring patients receiving isotretinoin also is summarized. Aesthetic and cosmetic dermatology services form a sizable portion of some practices. Our faculty review data on safety of topical and procedural therapies for cellulite as well as safe injection of facial fillers.
        PMID: 30016379 [PubMed - in process] {url} = URL to article
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