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Guide

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  1. ZZ_Cream_Original.jpg.db3397fd210f13cdcd  WATCH THE VIDEO

    Demodex Solutions, one of our sponsors, has graciously allowed us to award a free jar of the ZZ Cream to the best poster on our website each month. If you are the best poster of the month, you will receive a free jar of the ZZ Cream shipped to your address. So start posting!!! You have till the end of the month and someone will be awarded as the best poster and will be announced who the monthly winner is by clicking here if you want to know who the best poster is for the month

  2. 6 hours ago, Apurva Tathe said:

    Hello Rosaceans, if you can donate some money to our non-profit organization it would propel us to post more matter on this topic. I know that many rosaceans view our site, read each and every material, gain knowledge from this site which you will never find anywhere on other rosacea website but you never appreciate us giving some donation money. We keep asking members for some donation but I think its all throwing stone in water and admin has already declared that if we don't get money he will close the organization and then where will you read such good material from? think on this.

    Thanks Apurva. 
    We have a little more than $300 left in the bank which may keep us going for a few months. I can't keep this non profit organization going by myself and have devoted a huge number of volunteer hours keeping this non profit organization legal to keep our IRS exempt status going which means donating to the RRDi is tax deductible. Keeping a non profit organization exempt, legal and active requires many volunteer hours. As you mentioned, we know that thousands visit our website each month and obviously take away huge amounts of rosacea treatment data which the amount on our website is significant since it reflects over seventeen years of rosacea research data to help rosaceans control their rosacea. It would be a simple gesture of appreciation if just half the members would donate ONE DOLLAR using the PayPal Giving Fund and that would keep us going probably for a year. That is less than the cost of a cup of coffee. 

  3.  “Many types of non-501(c)(3) tax-exempt organizations including social welfare organizations, business leagues and trade associations, social clubs, voluntary employees’ beneficiary associations, cemetery companies, and veterans’ organizations, among others, are prohibited, by statute, from allowing inurement of net earnings or assets of the organization to benefit any insider. An insider is a person who has a personal or private interest in the activities of the organization such as an officer, director, or a key employee. An example of prohibited inurement would include payment of unreasonable compensation to an insider.”

    Private Benefit and Inurement, Page 5, Compliance Guide for Tax-Exempt Organizations

    From 1998 thru 2019 the NRS has received in donations/revenue  $15.5 million and spent over $10 million (65%) on private contractors owned by Sam Huff who serves on the board of directors of the NRS.  During this same period the NRS spent less than 10% of the revenue on rosacea research. For details on the math for this period click here.

    What do you think?  Sam Huff has served on the board of directors of the NRS for over twenty years. The NRS has spent over 60% of the majority of the donations/revenue received during this period on two private contractors owned by Sam Huff, Glendale Communications Group, Inc and Park Mailing and Fulfillment, Inc (see for yourself). Could Sam Huff be an 'example of prohibited inurement' [that] 'would include payment of unreasonable compensation to an insider'?

    What You Can Do

    Can you do anything about it?  Here are two recommendations: 

    (1) Write the IRS that you want this non profit to be investigated: 

    Internal Revenue Service
    Exempt Organizations Determinations
    Room 4024
    P.O. Box 2508
    Cincinnati, OH 45201

    RE: National Rosacea Society (EIN: 36-4120334)

    Here is a sample letter for your consideration: 

    01_05_21.pdf

    You may want to include in your letter that the IRS reconsider whether the NRS qualifies as a 501 c 3 since "A tax-exempt organization that does not restrict its participation in certain activities and does not absolutely refrain from others, risks failing the operational requirements for exemption from income tax and jeopardizing its tax-exempt status." [1] The NRS acts more like a 501 c 6 since the majority of its spending benefits businessmen and dermatologists qualifying it as a business league or professional association. For more information see the post about the difference between a non profit and a not for profit or how non profits work

    (2) Support the RRDi with your donations and stop donating to the NRS which is obviously spending the vast majority of its donations/revenue not on benefiting the public but instead benefits businessmen and dermatologists. You don't have to worry about the NRS going under since the pharmaceutical companies that donate to the NRS will continue to do so since these companies are happy with how the NRS spends it money and benefit since dermatologists benefit from the money these pharmaceutical companies are giving to the NRS and you can probably figure out why this arrangement will continue on. The NRS is embedded in this relationship and both are benefiting so the NRS won't miss your paltry donation since it receives most of its funding from pharmaceutical companies that have a vested interest in how the NRS supports 10% of its donations/revenues on rosacea research. 

    End Notes 

    [1] Compliance Guide for Tax Exempt Organizations, Publication 4221-NC (Rev. 9 -2014) Catalog Number 52447N,
    Department of the Treasury Internal Revenue Service

    p4221nc.pdf

  4. In harmony with this thread, it is time to review the activities of the NRS for 2019 since the NRS doesn't post its Form 990 for 2019 until the END of 2020 which anyone can download and review on its financial page by clicking here (scroll to the bottom of the page to find the Form 990 download). The page paints a very pretty picture with a graph and a list of expenses which shows 'Research Grants' in the amount of $231,526. Here is a screen shot for your enjoyment: 

    NRSScreenshotExpenses.png

    The Form 990 for 2019 that the NRS reports to the Internal Revenue Service shows a very different picture than the math in the above screen shot for research grants. The actual amount shown on Form 990 for research grants is only $23,315 which is ten times less what is shown above. Here is a screen shot of Form 990, Schedule I, which shows the Regents of the University of California at Irvine received the grant:

    NRSresearch201923K.png .png

    So you can choose to believe what the NRS publishes on its financial page, painting a pretty picture of how it spends ten times the amount shown on rosacea research on its website, or you can read for yourself Form 990 reported to the Internal Revenue Service and discover yourself, but the math on the Form 990 shows ten times less.  The Form 990 for 2019 shows that the NRS received in donations and revenue $303,013 and the total expenses were $419,490.  If you note below in the screenshot of the first page, you can see LINE 13, Grants and similar amounts paid (Part IX, column (A), lines 1-3) in the amount of $23,315. You will be hard pressed to find anywhere reported ten times that amount on research grants. 

    NRSform990_2019.png

    So the NRS spent 7% of its donations/revenue received in 2019 on rosacea research. To understand this better, for every dollar received by the NRS in 2019 seven cents was spent on rosacea research in 2019. What is enlightening in Form 990 for 2019 is how much the NRS spent on Glendale Communications Group in 2019 which is shown below in this screenshot reported as Section B. Independent Contractors with the same address as the NRS in the amount of $285,871: 

    glendale2019.png

    That means that Glendale Communications group received 94% of the total amount received in donations/revenue for the 2019 year. Glendale Communications Group, Inc., is owned by Sam Huff. The Form 990 for this year also has an interesting report shown in the screenshot below on Schedule L regarding 'Business Transactions Involving Interested Persons.' 

    NRSSamHuff2019.png

    This is how the NRS operates. 

    nrs_990_2019.pdf

  5. There are a growing number of members who are concerned with hiding their identity when posting in our public forum. Of course, using a cryptic display name is one way to do this and you can learn about this feature by reading this post and scrolling down to Change Your Display Name

    Hide Your Online Status
    There is another feature available to you so that you can HIDE YOUR ONLINE STATUS so that you are anonymous. After you have setup your RRDi member account you login to your ACCOUNT SETTINGS. 

    Find Settings > Security and Privacy > Hide My Online Status 

    privacy_settings.png

    Click the HIDE MY ONLINE STATUS button and Voila!!! So what does this do exactly?  

    There is a page where you can view what MEMBERS are currently logged in or how many guests are browsing the site. By HIDING YOUR ONLINE STATUS you are considered an ANONYMOUS member currently logged in. Here is the page: 

    https://irosacea.org/online/

  6. As everyone knows, 2020 has been a turbulent year and is ending. So is the RRDi. Our financial situation is meager and we have about two months left and we will be making the decision to shut down and dissolve. Rosaceans have left and gone away to the social media rosacea groups and prefer it that way. We have done our best and made a run at trying to help rosacea sufferers for seventeen years and the support presently to continue simply isn't there. No donations simply means the end of the RRDi. The saddest part to me is losing all the rosacea data on this website. I care, but I can't keep this website going by myself. Hope springs eternal. 

  7. "Of note, the data available so far suggest that therapeutic efficacy of HCQ in COVID-19 is well overshadowed by its ineffectiveness and detrimental effects as shown by some of the above-referred studies. Therefore, it is suggested to avoid use of HCQ for COVID-19 patients (unless necessary) until clear, sufficient, well-conducted, randomized, and controlled clinical data is available to reach the right conclusions."

    logo-frontpharmacol.gif.3f7222b175dee147

    Front Pharmacol. 2020; 11: 582025.
    Available Compounds With Therapeutic Potential Against COVID-19: Antimicrobial Therapies, Supportive Care, and Probable Vaccines
    Rajnish Kumar, Janmejai Kumar Srivastava,  Rachana Singh,  Mohammed Haris Siddiqui,  Rasha A. Mansouri,  Jawaher A. Abdulhakim,  May N. Bin-Jumah,  Saad Alkahtani,  Mohamed M. Abdel-Daim,  Md. Sahab Uddin

  8. "Till date, chloroquine is verified effective against COVID-19 in vitro through influencing bis (monoacylglycero) phosphate entry by controlling the endocytic pathway (Carrière et al., 2020). The use of chloroquine against COVID-19 might be a risk and require continuous monitoring until confirmed clinical evidence are available."

    logo-frontpharmacol.gif.3f7222b175dee147

    Front Pharmacol. 2020; 11: 582025.
    Available Compounds With Therapeutic Potential Against COVID-19: Antimicrobial Therapies, Supportive Care, and Probable Vaccines
    Rajnish Kumar, Janmejai Kumar Srivastava,  Rachana Singh,  Mohammed Haris Siddiqui,  Rasha A. Mansouri,  Jawaher A. Abdulhakim,  May N. Bin-Jumah,  Saad Alkahtani,  Mohamed M. Abdel-Daim,  Md. Sahab Uddin

  9.  Volunteer Beta Testers Needed! (Android)

    invisioncommunities.png

    Note: We have applied our community forum with Invision Community to list us under EDUCATION and we are approved on the list. 

    We are pleased to announce that a new mobile app is available in beta version for Android (for Apple devices using iOS you need to scroll further down). You can find it on the Google Play store. It is the Invision COMMUNITIES app (not the Invision Community app which is for admins ONLY). Ditto, confusing, so, hopefully you won't download the wrong one. Here is a screen shot in the Google Play Store which is the second one called Invision COMMUNITIES

    invisioncommunitiesgoogleplaytwochoices.png

    We have listed our community, the RRDi, and you should be able to find it listed in the category EDUCATION.  Please let us know your experience with this new app on your Android mobile device? Just find the reply to this topic button and let us know, please. 

    Please note: The iOS beta test has expired. We are not aware when Invision Community will renew the iOS beta test again. We will announce this here whenever the beta test is available again.  

    iOS (Apple) Version

    The iOS version is no longer in beta testing. When available again, You can volunteer and be a beta tester if you follow the two steps: 

    testflight.png

    step2betatest.png

    Once you have downloaded the app, at the bottom click on DISCOVER, you will find these categories to choose from and then select EDUCATION and scroll till you find RRDi Member Forum:  

    educationIC.jpgRRDi_IC_app.jpg

    Reply to this Topic

    There is a reply to this topic button somewhere on the device you are reading this post. If you never heard about this topic and you learned about it here first, wouldn't it be a gracious act on your part to show your appreciation for this topic by registering with just your email address and show your appreciation with a post?  And if registering is too much to ask, could you post your appreciation for this topic by finding the START NEW TOPIC button in our guest forum where you don't have to register?  We know how many have viewed this topic because our forum software shows the number of views. However, most rosaceans don't engage or show their appreciation for our website and the RRDi would simply ask that you show your appreciation, please, simply by a post.  

    IMG_0530.PNGIMG_0531_294.png

  10. According to PRNewswire, New York, dated December 5, 2018, 'rosacea therapeutics demand to exceed $2 billion dollars.' This report includes an interesting factoid that "In the consolidated competitive landscape of rosacea therapeutics market, four leading companies account for over 75% share of the total market value, including Pfizer Inc., Teva Pharmaceutical Industries Ltd., Foamix Pharmaceuticals Ltd., and Bayer A."

    Rosacea Therapeutics Demand to Exceed US$ 2 Billion in 2019 - Persistence Market Research, PRNewswire, 12/5/2018

    persistencemarketresearch.png

    Reply to this Topic

    There is a reply to this topic button somewhere on the device you are reading this post. If you never heard about this topic and you learned about it here first, wouldn't it be a gracious act on your part to show your appreciation for this topic by registering with just your email address and show your appreciation with a post?  And if registering is too much to ask, could you post your appreciation for this topic by finding the START NEW TOPIC button in our guest forum where you don't have to register?  We know how many have viewed this topic because our forum software shows the number of views. However, most rosaceans don't engage or show their appreciation for our website and the RRDi would simply ask that you show your appreciation, please, simply by a post.  

  11. Do you think that any rosacea non profit organization would do any research as this paper suggests, "that this opens a horizon for more research in the link between the skin and nervous system,"?  Most of the research on rosacea is profit motivated since the skin industry promotes and sponsors most of the clinical research papers on rosacea. In comparison to non profit rosacea research who would investigate this? Could a grassroots non profit organization for rosacea gather enough donations to investigate this subject?  What do you think?  For more information

    Are you aware that PD is also associated with lewy body dementia?

  12. AARS 2018 Form 990 Review

    Total Contributions from public support (99.25%) in the amount of $304,583.
    Total Expenses were $207,657.
    At the end of the 2016 the AARS reports 'net assets or fund balances' totaling $462,175.

    The AARS spent most of the expenses on 'conferences, meetings and conventions' in the amount of $148,728 for its prestigious members who are comprised mostly of dermatologists. The next largest expense was on 'management' in the amount of $48,000. The third largest expense was on its website which amounted to $4,473.  In 2018 the AARS didn't spend any of its donations on research grants.

    Schedule B, page 2 reveals the top contributors: 

    Galderma $50,000
    L'oreal $35,000
    Cutanea Life Sciences $15,000
    Ortho Dermatologics $35,000
    Bayer Healthcare $20,000
    Allergan USA $35,000

    Total $190,000

    The six skin care industry corporations above contributed 62% of the total donations. 

    You can read the Form 990 yourself: 

    2018_AARS Form 990 signed by JHarper 8.6.19.pdf

    You can read for yourself the mission of the AARS and what they did in 2018 in the screenshot below of Form 990 Part III: 

    AARSmission.png

  13. UPDATE

    "Hydroxychloroquine did not substantially reduce symptom severity in outpatients with early, mild COVID-19." 

    Annals of Internal Medicine, 16 Jul 2020
    Hydroxychloroquine in Nonhospitalized Adults With Early COVID-19
    A Randomized Trial
    Caleb P. Skipper, MD et al

    "Hydroxychloroquine did not lead to faster symptom improvement among patients who had Covid-19 symptoms and were not hospitalized, according to a new study published Thursday in the Annals of Internal Medicine." 
    New Covid-19 study, despite flaws, adds to case against hydroxychloroquine
    By MATTHEW HERPER, STAT

    "Hydroxychloroquine does not appear to keep people from getting the disease after they’ve been exposed to someone who has it. It does not change how many people hospitalized with Covid-19 die of the disease. It does not reduce symptoms for people with milder cases who aren’t in the hospital."
    Hydroxychloroquine Still Doesn’t Do Anything, New Data Shows, Wired

    "The first randomized clinical trial testing hydroxychloroquine as an early treatment for mild covid-19 found the drug was no better than a placebo in patients who were not hospitalized."
    Hydroxychloroquine studies show drug is not effective for early treatment of mild covid-19
    Laurie McGinley, The Washington Post, MSN 

  14. Hi Kara, 

    Welcome to the RRDi. It would be good to know if your partner did get a diagnosis of rosacea (or what exactly) and what particular antibiotic and how much, whether low dose or high dose, I.e., how many milligrams per day? Is your partner applying any topical(s)? 

    The laser mentioned in the article in this thread, pulsed dye, has been around for years.

    3AB09F9C-B937-42AB-A2AD-E678E124E43F.jpeg

     

      Coherent model 899 ring dye laser, with rhodamine 6G dye, pumped with a 514 nm argon laser. The laser is tuned somewhere around 580 nm. Photo taken by Han-Kwang at the AMOLF Institute in Amsterdam, Netherlands. P - image courtesy of Wikipedia Commons

    By the way, the article is an abstract made available through an RSS feed from PubMed published in Dermatologic Therapy. So this pulsed dye laser is usually in either a dermatology or cosmetic surgeon clinic and as you can imagine expensive. One treatment with an experienced practitioner as you can imagine is expensive, between $350 to $600 US Dollars and usually three or more treatments are required. Most insurance companies in the USA will cover such treatment if they are designated a medical diagnosis but usually such treatments are considered cosmetic and are not covered. I imagine the same conditions exist in the UK regarding whether insurance covers such laser treatments or not. You would have to ask. Most Rosaceans who rave about Laser treatment have to spend the money out of pocket. There are others who have negative experience with laser. By the way, some Rosaceans have now purchased their own light device, sometimes laser, others purchase LED or IPL devices since they are now available to the pubic. There is a learning curve using these devices and you can easily damage your skin so if you decide to go that route take care. Our store has some listed in broad band light. Using laser is just one of the many light devices under the treatment called photo dynamic therapy

    The article in this thread used the pulsed dye laser along with intradermal botulinum toxin type-A, a particular botulinum used in cosmetics. This treatment is also expensive and the practitioner should have experience using it since you can imagine if you were his first patient you might feel uneasy.  The article concludes this combination of treatment “demonstrated high efficacy and satisfaction rate with this combined approach and a low side-effect profile.”  If it cost several thousand dollars, you would expect such results. Just remember that you sign off on a lot of waivers and notices that you are warned of the risks and side effects of laser and botulinum treatment. 

    C614D6F5-0E02-4C0E-B5D2-87647EE35652.jpeg

    Dr. Braun performs Botox Injections on a client at Vancouver Laser & Skin Care Skin. Botox Injections temporarily reduces or eliminates frown lines, forehead creases, crow’s feet near the eyes and thick bands in the neck. By temporarily blocking the nerve impulses, the muscles that cause wrinkles relax, giving the skin a smoother, more refreshed appearance. - image courtesy of Wikimedia Commons

    There are clinical papers showing improvement in rosacea using Botox, I.e., Botox for Rosacea.

    Depending on what your partner is suffering with, recommend your partner read our welcome page or our newbies page. Some have found that simply reducing sugar/carbohydrate in the diet improves rosacea or whatever skin issue along with the topical ZZ cream.

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