Jump to content
  • Sign Up
  • 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 who also sits on the board of directors? Or should the non profit for rosacea spend most of its donations on conventions for dermatologists?

      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 (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]

      The other non profit for organization that spends most of its donations on conventions for dermatologists is the AARS

      What do you think a non profit for rosacea should spend its donations on?

      Brady Barrows RRDi Director

      End Notes

      [1] NRS Form 990 for 1998

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

      [3] Review of NRS Form 990 for previous years

      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.

       

    • Member Statistics

      • Total Members
        1,260
      • Most Online
        499

      Newest Member
      DJEvans
      Joined
    • Posts

      • Koebnerisin (S100A15): A novel player in the pathogenesis of rosacea. J Am Acad Dermatol. 2019 Jun;80(6):1753-1755 Authors: Batycka-Baran A, Hattinger E, Marchenkov A, Koziol M, Bieniek A, Szepietowski J, Ruzicka T, Wolf R PMID: 31103159 [PubMed - in process] {url} = URL to article
      • Related Articles Combined treatment of recalcitrant papulopustular rosacea involving pulsed dye laser and fractional microneedling radiofrequency with low-dose isotretinoin. J Cosmet Dermatol. 2019 May 18;: Authors: Kwon HH, Jung JY, Lee WY, Bae Y, Park GH Abstract BACKGROUND: While a considerable number of cases with papulopustular rosacea (PPR) are resistant to conventional medications, therapeutic regimens are not currently established. Pulsed dye laser (PDL) and fractional microneedling radiofrequency (FMR) have previously demonstrated satisfactory results for anti-angiogenesis, anti-inflammation, and dermal remodeling. AIMS: To evaluate the efficacy and safety of novel combination regimen with low-dose oral isotretinoin, PDL, and FMR in the treatment of recalcitrant PPR. PATIENTS AND METHODS: A retrospective study was undertaken for recalcitrant PPR patients to evaluate the clinical course of novel combination regimen. Twenty-five PPR patients who had failed in previous first-line therapies were enrolled. They were treated with three sessions of PDL and FMR consecutively at 4-week intervals, maintaining daily oral administration of 10 mg isotretinoin for 8 weeks. Objective assessments, erythema index measurement, and patients' subjective satisfaction were evaluated at each visit and 16 weeks after the final treatment. RESULTS: At the final follow-up visit, the number of papules and pustules decreased by 71%, and erythema index by 54% compared with baseline (P < 0.05 for both). Physician's global assessment based on rosacea severity score and patients' subjective assessments paralleled with these results. No serious side effect was observed during whole study periods. CONCLUSION: This novel combination regimen demonstrated satisfactory efficacy with reasonable safety profiles for the treatment of recalcitrant PPR. PMID: 31102325 [PubMed - as supplied by publisher] {url} = URL to article
      • A paper in 2017 continues to explain the quandary. "Many studies have shown higher density of the parasites in diseased inflammatory skin than in normal skin, but whether it is the cause or result of the inflammation remains unclear." [6]  A paper in 2018 may help to resolve this issue because for the first time it has been discovered that Demodex mites secrete bioactive molecules that reduced TLR2 expression in sebocytes. [7] So while the jury is still out on this subject, What do you think?  Which comes first, the demodex or the rosacea? Does it even matter? With your above statement I highlighted and giving my view on this topic which comes first, I am also stating the same thing that I think demodex came first well it is not experiment or evidence based but with the experience I have had. Human Permanent Ectoparasites; Recent Advances on Biology and Clinical Significance of Demodex Mites: Narrative Review Article With this journal which you quoted in your article , "Many studies have shown higher density of the parasites in diseased inflammatory skin than in normal skin, but whether it is the cause or result of the inflammation remains unclear." So I was elaborating this sentence that higher density might be the result of inflammation (inflammatory immune response) and then subsequently the cause of inflammation. So I explained this with the term “reciprocal correlation”. And let’s say if the higher density is the result of inflammation, so the altered cutaneous immune responses are the cause of persistent inflammation and that is what I was trying to state in my post but then I read the above journal in detail after your question and I found the confirmation of my  expression with these sentences of journal   “ Studies indicate increased number of D. folliculorum in immunocompromised patients”  and “It remains to be determined which kind of cellular immunity may foster mites’ proliferation” and my statement “the false immune response(altered immune response) might be the cause of increasing number of demodex”  state the same thing. Thank you for questions because what I was stating is experience based but after thoroughly reading the reference journals from your article I found the confirmation of the same thing.    
      • That is difficult to follow. In a paper by Powell, et al, it is stated that the mites "secrete bioactive molecules that reduced TLR2 expression in Sebocytes." The 'bioactive molecules' that the mites secrete keep the innate immune system from reacting to the mites when in normal numbers on normal skin, so my question is what causes the demodex to proliferate in greater numbers to what you say,  "cause inflammatory immune response and inflammatory immune response" ?   Could you better explain what you mean by "self-antigen presentation to immune cells rather than non-self which is false immune response? ?
      • In my view, normal skin also has demodex mites but less in number so they can't activate pro-inflammatory cytokines but when the number is more they activate it. so logically when the normal skin flora has demodex before rosacea has occured so demodex apparently came first and because demodex mites cause inflammatory immune response and inflammatory immune response is not just related to mites but self-antigen presentation to immune cells rather than non-self which is false immune response or we call it autoimmune response and attacks to healthy cells and so the false immune response might be the cause of increasing number of demodex .So demodex and rosacea have reciprocity with each other to increase its effects and outcomes.
      • While it has been reported that topical ivermectin has better results than topical metronidazole, there is a paper you should consider reading if you are considering taking oral ivermectin and metronidazole.  Oral Ivermectin for Rosacea A paper published by the International Journal of Infectious Diseases that compared taking 200 micro-grams Ivermectin per Kilogram of body weight of oral ivermectin once a week in one group (1) of sixty rosacea patients with another group (2) of sixty rosacea patients who received a combined therapy of the same amount of ivermectin along with 250 mg of oral metronidazole three times a day. The results were that the second group improved better than the first group. For more information Ivermectin Some may concerned about taking ivermectin orally. It is interesting to note that ivermectin has been around since the late 1970s and half "of the 2015 Nobel Prize in Physiology or Medicine was awarded jointly to Campbell and Ōmura for discovering avermectin, 'the derivatives of which have radically lowered the incidence of river blindness and lymphatic filariasis, as well as showing efficacy against an expanding number of other parasitic diseases' " Wikipedia Ivermectin is "a dihydro derivative of avermectin—originating solely from a single microorganism isolated at the Kitasato Intitute, Tokyo, Japan from Japanese soil...originally introduced as a veterinary drug...has led many to describe it as a “wonder” drug....few drugs that can seriously lay claim to the title of ‘Wonder drug’, penicillin and aspirin being two that have perhaps had greatest beneficial impact on the health and wellbeing of Mankind....But ivermectin can also be considered alongside those worthy contenders, based on its versatility, safety and the beneficial impact that it has had, and continues to have, worldwide—especially on hundreds of millions of the world’s poorest people....Despite decades of searching around the world, the Japanese microorganism remains the only source of avermectin ever found. Originating from a single Japanese soil sample and the outcome of the innovative, international collaborative research partnership to find new antiparasitics, the extremely safe and more effective avermectin derivative, ivermectin, was initially introduced as a commercial product for Animal Health in 1981." [1] While there are no long term clinical studies done on ivermectin use with rosacea, there are papers showing the long term effects of oral ivermectin in school-age and pre-school children treated for helminths. [2] There are also papers written about the long term effects of treating humans with ivermectin on other parasites, i.e., scabies.   'Intriguingly, IVM has a diverse range of effects in many different organisms, far beyond the endoparasites and ectoparasites it was developed to control. For example, IVM has been shown to regulate glucose and cholesterol levels in diabetic mice, to suppress malignant cell proliferation in various cancers, to inhibit viral replication in several flaviviruses, and to reduce survival in major insect vectors of malaria and trypanosomiasis. Clearly, much remains to be learned about this versatile drug, but the promise of more sustainable strategies for current helminth-control programmes and novel applications to improve and democratise human health, are compelling arguments to pursue this cause." [3] "Evidence suggests that oral ivermectin may be a safe and effective treatment for scabies". One article says "A Single, Oral Dose of Ivermectin Cures Scabies". [4] Two oral doses of ivermectin was found to be just as effective as a single topical application of permethrin in treating scabies. [5] "When given orally, ivermectin can be used for treating head or pubic lice and scabies (an itchy, highly contagious skin disease caused by mites burrowing in the skin). Oral ivermectin is useful to control outbreaks of scabies in nursing homes where whole-body application of topical agents is difficult. Ivermectin's greatest impact on human health has been in Africa. Since 1987, in addition to its use for other parasitic infestations, ivermectin has been used extensively to control onchocerciasis with 1.4 billion treatments so far. Onchocerciasis is also called "river blindness" because the blackfly that transmits the disease breeds in fast-moving streams and rivers." [6] Horse Paste With the craze of rosaceans using horse paste to treat rosacea topically, there is one report of oral horse paste treatment for Lyme disease in Facebook by a poster. [7] Another website suggests taking oral ivermectin and using topical horse paste to treat scabies. [8] So there are a substantial number of humans globally who have taken oral ivermectin.  More information on oral ivermectin. ElaineA has a post worth reading on this subject, Oral Ivermectin, getting diagnosed and a prescription. End Notes [1] Proc Jpn Acad Ser B Phys Biol Sci. 2011 Feb 10; 87(2): 13–28. doi: 10.2183/pjab.87.13 PMCID: PMC3043740; PMID: 21321478 Ivermectin, ‘Wonder drug’ from Japan: the human use perspective Andy CRUMP and Satoshi ŌMURA "When doctors in the USA prescribe ivermectin for scabies that is called an "off-label" use. This is not unusual and it is generally legal.   Once a drug has been FDA approved for one disease or use, a doctor can prescribe it for any other use they choose to. Read more about "off-label use" in Wikipedia here. Wikipedia says "Off-label use is generally legal unless it violates specific ethical guidelines or safety regulations, but it does carry health risks and differences in legal liability." In other words, if the doctor thinks it is unethical to prescribe ivermectin or that he might get sued for prescribing it, he probably won't." In Depth Information On Ivermectin, MaximPulse, Green Dept [2] PLoS Negl Trop Dis. 2008 Sep; 2(9): e293. Published online 2008 Sep 10. doi: 10.1371/journal.pntd.0000293 PMCID: PMC2553482; PMID: 18820741 Impact of Long-Term Treatment with Ivermectin on the Prevalence and Intensity of Soil-Transmitted Helminth Infections Ana Lucia Moncayo,  Maritza Vaca,  Leila Amorim,  Alejandro Rodriguez,  Silvia Erazo,  Gisela Oviedo,  Isabel Quinzo,  Margarita Padilla,  Martha Chico,  Raquel Lovato,  Eduardo Gomez,  Mauricio L. Barreto,  and Philip J. Cooper   [3] Trends in Parasitology Volume 33, Issue 6, June 2017, Pages 463-472 Ivermectin – Old Drug, New Tricks? Roz Laing. Victoria Gillan. Eileen Devaney [4] CDC, Scabies, Medications A Single, Oral Dose of Ivermectin Cures Scabies NEJM Journal Watch, September 1, 1995 [5] Ann Parasitol. 2013;59(4):189-94. The efficacy of permethrin 5% vs. oral ivermectin for the treatment of scabies. Ranjkesh MR, Naghili B, Goldust M, Rezaee E. [6] Oops! I Just Took My Dog's Heartworm Medicine Ivermectin Safety, National Capitol Poison Control  [7] Post number five in this thread [8] Ivermectin to cure scabies, Maximpulse, Green Dept
      • This post has been promoted to an article. 
      • Thanks Apurva for your research and investigation into this. Hope some substantiate your findings. 
    ×
    ×
    • Create New...