Jump to content
  • 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.

       

    • Member Statistics

      • Total Members
        1,203
      • Most Online
        325

      Newest Member
      Miguel Montero
      Joined
    • Posts

      • Related Articles Role of serum 25-hydroxyvitamin D levels and vitamin D receptor gene polymorphisms in patients with rosacea: a case-control study. Clin Exp Dermatol. 2018 Sep 23;: Authors: Akdogan N, Alli N, Incel Uysal P, Candar T Abstract
        BACKGROUND: Vitamin D has significant effects on the immune system and thereby on the pathogenesis of rosacea. However, there is a lack of information on the vitamin D status and vitamin D receptors (VDRs) of patients with rosacea.
        AIM: To evaluate the role of vitamin D in rosacea susceptibility.
        METHODS: A case-control study was conducted, enrolling patients with rosacea and healthy controls (HCs). Five VDR gene single nucleotide polymorphisms (SNPs) (Cdx2, FokI, ApaI, BsmI and TaqI) and serum 25-hydroxyvitamin D3 [25(OH)D3 ] levels were compared between patients and HCs.
        RESULTS: The study enrolled 60 patients (M/F: 14/46) and 60 age- and sex-matched HCs (M/F: 14/46). Age (mean ± SD) was 48 ± 11 years for both groups. The serum 25(OH)D3 levels (median ± interquartile range) were higher in patients with rosacea (12.9 ± 6.8 ng/mL) than in HCs (10.5 ± 3.7 ng/mL) (P < 0.001). Subjects with high serum 25(OH)D3 levels had a 1.36-fold increased risk of rosacea (95% CI 1.17-1.58). Heterozygous and mutant ApaI polymorphisms increased rosacea risk by 5.26-fold (95% CI 1.51-18.35) and 3.69-fold (95% CI 1.19-11.48), respectively, whereas mutant TaqI polymorphisms decreased the risk by 4.69 times (95% CI 1.37-16.67). Heterozygosity for Cdx2 alleles increased rosacea risk, whereas wildtype ApaI and mutant TaqI alleles decreased it.
        CONCLUSIONS: The present study suggests that an increase in vitamin D levels may contribute to the development of rosacea. ApaI and TaqI polymorphisms, and heterozygous Cdx2, wildtype ApaI and mutant TaqI alleles were significantly associated with rosacea. These results indicate a possible role of vitamin D and VDR pathways in the pathogenesis of rosacea, although causality could not be assessed.
        PMID: 30246390 [PubMed - as supplied by publisher] {url} = URL to article
      • Global Epidemiology and Clinical Spectrum of Rosacea, Highlighting Skin of Color: Review and Clinical Practice Experience. J Am Acad Dermatol. 2018 Sep 18;: Authors: Alexis AF, Callender VD, Baldwin HE, Desai SR, Rendon MI, Taylor SC Abstract
        Among individuals with skin of color, rosacea has been reported less frequently than in those with white skin, but it is not a rare disease. In fact, rosacea may be underreported and underdiagnosed in populations with skin of color because of the difficulty of discerning erythema and telangiectasia in dark skin, as well as underestimation of the susceptibility of more highly pigmented skin to dermatologic conditions like rosacea whose triggers include sun exposure. Many people with skin of color who have rosacea may experience delayed diagnosis leading to inappropriate or inadequate treatment, greater morbidity, and uncontrolled, progressive disease with disfiguring manifestations, including phymatous rosacea. This paper reviews the epidemiology of rosacea in skin of color and highlights variations in the clinical presentation of rosacea across the diverse spectrum of patient populations affected. It presents strategies to aid in the timely diagnosis and effective treatment of rosacea in patients with skin of color, with an aim of promoting increased awareness of rosacea in these patients and reducing disparities in the management of their disease.
        PMID: 30240779 [PubMed - as supplied by publisher] {url} = URL to article
      • Full Text The four components of this treatment are: (1) Dextran sulfate is an anionic polymer of sulfated glucose [1] Dextran sulfate contains approximately 17% sulfur which is equivalent to approximately 2.3 sulfate groups per glucosyl residue. [2]  (2) 4-t-butylcyclohexanol  [BCH; TRP-regulin ®] [3] (3) pongamia oil [4] (4) hesperidin methyl chalcone [HMC] [5] Some of the products mentioned in the above post, "Avène redness-relief cosmetic products for sensitive skin prone to redness" are:  
        Eau Thermale Avène Antirougeurs Clean Redness-Relief Refreshing Cleansing Lotion
        Eau Thermale Avène Tolérance Extrême Emulsion
        Eau Thermale Avène Antirougeurs Calm Soothing Repair Mask
        Eau Thermale Avène Xeracalm A.D Lipid-Replenishing Cleansing Oil
        Eau Thermale Avène Skin Recovery Cream
        Eau Thermale Avène Cicalfate Restorative Skin Cream
        Eau Thermale Avène Extremely Gentle Cleanser Lotion
        Eau Thermale Avène Antirougeurs Dermo Cleansing Milk
        Eau Thermale Avène Antirougeurs Day Redness Relief Soothing SPF 25 Cream
        Eau Thermale Avène Antirougeurs Fort Relief Concentrate End Notes  [1] Dextran Sulfate, Sodium Salt (CAS 9011-18-1), Santa Cruz Biotechnology [2] Dextran Sulfate, Sigma Aldrich, Millipore Sigma [3] PubChem, Sigma Aldrich, ChemSpider, Paula's Choice, Safety Data Sheet, Effective treatment for sensitive skin: 4-t-butylcyclohexanol and licochalcone A [4] derived from the seeds of the Millettia pinnata tree [5] Paula's Choice, Truth in Aging, Douglas Laboratories, 
      • Effects of dextran sulfate, 4-t-butylcyclohexanol, pongamia oil and hesperidin methyl chalcone on inflammatory and vascular responses implicated in rosacea. Clin Cosmet Investig Dermatol. 2018;11:421-429 Authors: Hernandez-Pigeon H, Garidou L, Galliano MF, Delga H, Aries MF, Duplan H, Bessou-Touya S, Castex-Rizzi N Abstract
        Background: Rosacea is a chronic facial skin disorder characterized by inflammation and vascular abnormalities. The pathophysiology of rosacea involves increased activation of the capsaicin receptor, TRPV1, the vascular endothelial growth factor (VEGF) pathway, and cathelicidin LL-37, MMP-9, and KLKs. We evaluated the activity of four compounds (dextran sulfate, 4-t-butylcyclohexanol [BCH; TRP-regulin®], pongamia oil, and hesperidin methyl chalcone [HMC]) on inflammatory and vascular responses implicated in rosacea.
        Materials and methods: The anti-inflammatory activity of dextran sulfate was evaluated on PGE2 production after PMA stimulation of NCTC-2544 keratinocytes, and on normal human epidermal keratinocytes (NHEKs) after proinflammatory stimulation to mimic a rosacea environment. The anti-angiogenic activity of dextran sulfate was measured by analyzing pseudotube formation in co-cultured human microvascular endothelial cells/normal human dermal fibroblasts. HMC modulation of vascular responses and IL-8 cytokine production after SP stimulation was evaluated in human skin explants. We also assessed the effect of BCH on TRPV1 activation, and the effect of combined BCH and pongamia oil on the inflammatory response of NHEKs.
        Results: Dextran sulfate strongly and significantly inhibited PMA-induced PGE2 production, inhibited KLK5 and MMP-9 mRNA expression, and IL-8, IL-1α and VEGF production, and displayed a highly significant inhibitory effect on VEGF-induced pseudotube formation. In SP-stimulated human skin explants, HMC significantly decreased the proportion of dilated vessels, total vessel area, and IL-8 production. BCH significantly and dose-dependently inhibited TRPV1 activation, and BCH and pongamia oil inhibited CXCL1 and CXCL6 mRNA expression and IL-8 production in NHEKs. Combined BCH/pongamia oil inhibited IL-8 production synergistically.
        Conclusion: These in vitro results showed that dextran sulfate, BCH, pongamia oil and HMC, possess complementary soothing and anti-redness properties, supporting their combination in Avène redness-relief cosmetic products for sensitive skin prone to redness, and for topical adjunctive rosacea treatment.
        PMID: 30233225 [PubMed] {url} = URL to article
      • One paper links Fungal keratitis associated with ocular rosacea
      • Related Articles Procedural management of rhinophyma: A comprehensive review. J Cosmet Dermatol. 2018 Sep 17;: Authors: Krausz AE, Goldberg DJ, Ciocon DH, Tinklepaugh AJ Abstract
        BACKGROUND: Rhinophyma is a cosmetically deforming disease characterized by nodular overgrowth of the lower 2/3 of the nose and is considered the end stage of acne rosacea.
        AIMS: Review the spectrum of procedural techniques for treatment of rhinophyma with a focus on the advantages and disadvantages of each modality.
        METHODS: A comprehensive literature search was conducted using the search terms "rhinophyma," "treatment," and "surgery" in PubMed. Case reports, case series, and small retrospective trials using procedural techniques for management of rhinophyma were included for review. Animal studies, non-English articles, and reports of medical treatment of rhinophyma were excluded.
        RESULTS: There are currently no prospective, randomized controlled studies evaluating procedural management of rhinophyma. The most commonly employed treatments include scalpel excision, resection with heated knives, dermabrasion, electrosurgery and lasers, specifically carbon dioxide (CO2 ) and erbium:yttrium-aluminum-garnet (Er:YAG). The main complication associated with complete excision of rhinophymatous tissue is excessive scarring. To correct for this adverse effect, partial or tangential excision with preservation of underlying adnexal structures is now the accepted technique, irrespective of the chosen modality.
        CONCLUSION: There is no accepted gold standard for management of rhinophyma, and each modality succeeds in maintaining hemostasis, reducing scarring and achieving satisfactory cosmesis to different degrees. There is a conflicting data on the theoretical risk of recurrence with partial excision due to incomplete removal of tissue. Further studies evaluating this risk and alternate methods of prevention are required.
        PMID: 30225926 [PubMed - as supplied by publisher] {url} = URL to article
      • Diagnostic Indicators of Rosacea and Demodicosis. Acta Derm Venereol. 2018 Sep 18;: Authors: Forton FMN, De Maertelaer V Abstract
        Papulopustular rosacea and demodicosis are characterized by non-specific symptoms, which can make clinical diagnosis difficult. This retrospective study of 844 patients assessed the diagnostic importance of clinical signs and symptoms that are poorly recognized as being associated with these conditions. In addition to well-known signs (vascular signs (present in 80% of patients), papules (39%), pustules (22%) and ocular involvement (21%)), other signs and symptoms (discreet follicular scales (93%), scalp symptoms (pruritus, dandruff or folliculitis; 38%) and pruritus (15%)) may also suggest a diagnosis not only of demodicosis, but also of papulopustular rosacea. Facial Demodex densities (measured by 2 consecutive standardized skin biopsies) were higher when ocular or scalp involvement was present, suggesting more advanced disease, but further investigations are needed to confirm this hypothesis. Recognition of these clinical signs and symptoms should encourage dermatologists to perform a Demodex density test, thus enabling appropriate diagnosis to be made.
        PMID: 30226528 [PubMed - as supplied by publisher] {url} = URL to article
      • Related Articles FINACEA™ (Azelaic Acid) Foam, 15. Skinmed. 2016;14(6):445-447 Authors: Gupta AK, Foley KA, Abramovits W PMID: 28031132 [PubMed - indexed for MEDLINE] {url} = URL to article
    ×