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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 board members or administrators and founders of the rosacea non profit organization use most of the donations to pay private contractors that are owned by one of the administrators of the non profit organization who also serve on the board of directors? Or should the non profit for rosacea spend most of its donations on its board members who benefit, comprised mostly of dermatologists and business men who serve on the board of directors, i.e., meetings for members or conventions for dermatologists? Should the skin industry benefit from the activities of the rosacea non profit?  Who do you think should benefit from the rosacea non profit?  Rosacea Sufferers.

    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% 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. Some 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 (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. [4]

    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:
    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 was the director of the NRS and served on the board of directors. 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. (requires subscription to view)

    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, a board member of the NRS or Andrew Huff who also sits on the board of directors of the NRS. From 2001 on, the name of the private contractor was changed to Glendale Communications Group, Inc., owned by Sam Huff or his son Andrew, and Park Mailing and Fulfillment, Inc., also owned by Sam Huff or his son Andrew (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 the years 2016 through 2018 are listed in the end notes. [3]

    All NRS Form 990 public filings are listed in end note [4].

    Another rosacea non profit organization that spends most of its donations on conventions for dermatologists (small percentage on rosacea research) is the AARS (requires subscription to view).

    The Canadian ARSC non profit doesn't disclose what it spends is donations on so we have no idea what it does (requires subscription to view). 

    Brady Barrows, RRDi Treasurer

    End Notes

    [1] nrs_990_1998.pdf

    [2] NRS Form 990 Spreadsheet 1998 thru the most recent published

    [3] Review of NRS Form 990 for previous years (2016 thru to the latest year report)

    How the NRS spent donations in 2013 can be read by clicking here.

    How the NRS spent donations in 2014 can be read by clicking here.

    How the NRS spent donations in 2015 can be read by clicking here.

    How the NRS spent donations in 2016 can be read by clicking here.

    [4] NRS Form 990 from 1998 thru to the latest Form 990 year provided by the NRS (over twenty plus years)
























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    • J Clin Aesthet Dermatol. 2022 Jul;15(7):E60-E62. ABSTRACT Rosacea is a chronic disease requiring long-term management. However, it is often treated according to package label instructions, which reflect the conditions of a Phase III study rather than a chronic disease. Furthermore, due to a lack of clinical data or guidelines on long-term treatment, many clinicians choose to discontinue treatment once success has been reached, rather than continuing with maintenance therapy. As experienced practicing dermatologists and investigators in the field, in this article we address the current evidence gaps in rosacea management and provide practical advice to clinicians on how optimal outcomes can be achieved and maintained in patients with rosacea in real-world practice, based on our own experience and the available clinical data. PMID:35942011 | PMC:PMC9345196 {url} = URL to article
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    • The RRDi has been using Invision Community [IC] forum platform for over fifteen years. When we started in 2004 it was recommended by Warren Stuart who was the assistant director of the RRDi, along with Steve Andreessen who also served on the board of directors and was instrumental  in using what was then called Invision Power Services (later the name was changed to Invision Community [IC]) after going through different website stages. The result was the entire board of directors at that time came to the consensus to use IC for our website. It is a powerful platform with many add-on features and a significant number of developers adding plugins and additional features to the platform. Invision Community Clients Some very large corporations use the Invision Community platform. Do you recognize any of these companies below? Are the above companies successful using the Invision Community platform?   Medical Clients Who Use Invision Community Platform While all the above companies have their social media accounts as well, all these companies prefer to continue using the Invision Community Platform, and so does the RRDi prefer using the Invision Community platform because of its excellent features. We have invested a significant percentage of our donations into using this platform. So if you find this platform not to your liking and prefer the social media style platform we recommend you VOLUNTEER to help us improve our website. To switch to another platform is a significant change that would be cost prohibitive unless some donor gives us a million dollars and then we could do just that. If that is something you could volunteer to help accomplish you either have to convince the board of directors or volunteer to be a board member and help convince your fellow board members your recommendation. Android & iOS Mobile Apps 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 announced beta versions of the Android app  (iOS beta app has expired) 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.  Reply to this Topic There is a reply to this topic button somewhere on the device you are reading this post. 
    • J Dtsch Dermatol Ges. 2022 Aug 5. doi: 10.1111/ddg.14849. Online ahead of print. ABSTRACT This updated and upgraded S2k guideline deals with the diagnosis and treatment of rosacea, which is a common, chronic inflammatory skin disease mostly affecting the face. Initially, rosacea is characterized by recurrent erythema, telangiectasia and flushing. Later, the inflammatory component predominates, with persistent erythema with follicular papules, papulopustules and pustules. The development of phyma, which usually occurs on the acral localizations, is the most severe manifestation. For the treatment of rosacea, the interdisciplinary guideline committee, with representatives of the German Dermatological Society (DDG), the Professional Association of German Dermatologists (BVDD), the German Opthalmological Society (DOG), the Society for Dermopharmacy (GD), the Swiss Society for Dermatology and Venereology (SGDV) and the German Rosacea Aid e. V., recommends the avoidance of trigger factors and topical applications of metronidazole, azelaic acid or ivermectin. For symptomatic treatment of persistent centrofacial erythema, the topical vasoconstrictors brimonidine or oxymetazoline can also be used. Systemic therapy is recommended for therapy-resistant and severe forms of rosacea papulopustulosa. The drug of choice is low-dose doxycycline. Alternatively, low-dose isotretinoin can be recommended. Ocular rosacea should be treated with lid margin hygiene. For topical treatment, ciclosporin eye drops, azithromycin, ivermectin or metronidazole are suggested. PMID:35929658 | DOI:10.1111/ddg.14849 {url} = URL to article
    • Volunteer Beta Developers Needed! (Android & iOS) Wish List  If you are a code developer and want to volunteer for our non profit organization for rosacea to develop a mobile app for either Android or iOS please contact us.  Note: We have applied our community forum with Invision Community to list us under EDUCATION and we were approved on the list.  There WAS a mobile app available in beta version for Android (for Apple devices using iOS you need to scroll further down). It was on the Google Play store. It is the Invision COMMUNITIES app (not the Invision Community app which is for admins ONLY). Yes this is confusing, since it was in development and both the iOS and Android apps are no longer in development. Here is a screen shot that was in the Google Play Store which is the second one called Invision COMMUNITIES:  We listed our community, the RRDi, when the above 'Communities' apps was available in the Google Play Store and you may be able to find our listing in the category EDUCATION.  Please let us know your experience with this app on your Android mobile device? Just find the reply to this topic button and let us know, please. If you are a code writer developer and would like to volunteer to make a mobile app for our RRDi Invision Community please join the RRDi and explain in your profile your volunteer spirit.  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. The Android version development has been put on hold by the Invision Community developer team. If this app ever is developed further we will announce it on this post.  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:  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:   Reply to this Topic There is a reply to this topic button somewhere on the device you are reading this post. 
    • Toxicol Appl Pharmacol. 2022 Aug 1:116189. doi: 10.1016/j.taap.2022.116189. Online ahead of print. ABSTRACT BACKGROUND: Toll-like receptor (TLR) 2, along with some chemokines, were found to be overexpressed in rosacea patients. Aryl hydrocarbon Receptor (AhR) activation inhibited the inflammatory responses triggered by TLR activation. The current study was conducted to evaluate the underlying mechanisms of AhR activation in rosacea models. MATERIALS AND METHODS: Seven-week-old female BALB/c mice received twice daily intradermal injections of LL-37 for 2 consecutive days. Thirty minutes after the second LL-37 injection, 1% or 0.5% AhR agonist benvitimod was administrated topically once per day for 3 consecutive days. HaCaT cells were treated with different concentrations of LL-37 and benvitimod, and were further infected with lentivirus to over-express TLR2. Expressions of TLR2, CCL5, CXCL9, CXCL10 and CXCL11 were evaluated using qRT-PCR, Western Blot or ELISA. RESULTS: AhR activation ameliorated LL-37-induced rosacea-like eruptions in mice by reductions in redness scores, redness areas and dermal inflammatory cell infiltrates. Elevated expressions of TLR2 and chemokines (CCL5, CXCL9, CXCL10 and CXCL11) following LL-37 treatment were decreased by AhR activation. In HaCaT cells receiving LL-37, TLR2 and the four chemokines were up-regulated, and levels of these chemokines were further enhanced after over-expressing TLR2. At 8 h after an administration of 10 μM benvitimod, gene expressions of TLR2 and the four chemokines in LL-37 treated HaCat cells were decreased, while their protein expressions were decreased for 24 h. CONCLUSION: AhR activation is beneficial in treating rosacea in a LL-37-induced rosacea mouse model and involves a suppression of the TLR signaling pathway in an HaCaT cell model of rosacea. PMID:35926563 | DOI:10.1016/j.taap.2022.116189 {url} = URL to article
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