Jump to content
  • 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 sits on the board of directors? Or should the non profit for rosacea spend most of its donations on its members who benefit, comprised mostly of dermatologists, i.e., meetings, 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% 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. [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:
    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. 

    nrs_990_1998.pdf

    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 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

    The Canadian ARSC non profit doesn't disclose what it spends is donations on so we have no idea what it does. 

    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

    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 2018

    nrs_990_1998.pdf

    nrs_990_1999.pdf

    nrs_990_2000.pdf

    nrs_990_2001.pdf

    nrs_990_2002.pdf

    nrs_990_2003.pdf

    nrs_990_2004.pdf

    nrs_990_2005.pdf

    nrs_990_2006.pdf

    nrs_990_2007.pdf

    nrs_990_2008.pdf

    nrs_990_2009.pdf

    nrs_990_2010.pdf

    nrs_990_2011.pdf

    nrs_990_2012.pdf

    nrs_990_2013.pdf

    nrs_990_2014.pdf

    nrs_990_2015.pdf

    nrs_990_2016.pdf

    nrs_990_2017.pdf

    nrs_990_2018.pdf

    nrs_990_2019.pdf



  • Member Statistics

    • Total Members
      1,619
    • Most Online
      499

    Newest Member
    Sharon Sykes
    Joined
  • Posts

    • J Dermatol. 2021 Dec 1. doi: 10.1111/1346-8138.16254. Online ahead of print. ABSTRACT Topical metronidazole is not currently approved in Japan as a treatment for the indication of rosacea, although 0.75% metronidazole gel was authorized in 2014 for the management of cancerous skin ulcers. We conducted a randomized, double-blind, vehicle-controlled study to evaluate the efficacy and safety of 0.75% metronidazole gel in Japanese patients with inflammatory lesions (papules/pustules) and erythema associated with moderate to severe rosacea. Overall, 130 patients were randomly assigned to receive 0.75% metronidazole gel (n = 65) or vehicle (n = 65), and 120 patients completed 12 weeks of treatment. The primary efficacy outcome was the proportion of patients who achieved both of the following at week 12: an improvement of >50% in the number of inflammatory lesions (papules/pustules) and a positive change of at least one degree in erythema severity. This composite outcome was achieved by 72.3% of metronidazole-treated patients versus 36.9% of vehicle-treated patients, with the between-group difference demonstrating significant improvement with 0.75% metronidazole gel (p < 0.0001). All secondary efficacy endpoints (patients achieving a score of ≥3 for percent change in the number of inflammatory lesions at week 12; patients achieving a score of ≥3 for change in erythema severity at week 12; patients achieving an Investigator's Global Assessment score of 0 or 1 at week 12; percent change over time in the number of inflammatory lesions; change over time in erythema severity) also showed improvement in the 0.75% metronidazole gel group. The incidence of adverse events was higher with metronidazole (40.0%) than with vehicle (29.2%). Of these, treatment-related, treatment-emergent adverse events occurred in 9.2% and 6.2% in the metronidazole and the vehicle group, respectively, but there were no new safety concerns. Overall, the results of this study have confirmed the efficacy and safety of 0.75% metronidazole gel in Japanese patients with rosacea. PMID:34854112 | DOI:10.1111/1346-8138.16254 {url} = URL to article
    • Postepy Dermatol Alergol. 2021 Oct;38(5):855-857. doi: 10.5114/ada.2020.99367. Epub 2020 Oct 13. ABSTRACT INTRODUCTION: Rhinophyma is a relatively rare form of rosacea, while basal cell carcinoma (BCC) is the most frequent skin cancer in humans - both diseases prevail in the elderly. AIM: To analyse patients with rhinophyma treated surgically in the Dermatosurgery Unit and look for possible cases with BCC within the rhinophyma. MATERIAL AND METHODS: We performed a retrospective review of all treated rhinophymas in the Dermatosurgery Unit in 2004-2019. RESULTS: Among 140 rhinophyma patients 2 (1.4%) subjects with concomitant clinically diagnosed and histologically confirmed BCC were found, with BCC located in the hypertrophic tissue of the nose. There were no patients with BCC located in other anatomical regions of the skin. Both of these patients were in more advanced age. CONCLUSIONS: Taking into consideration these two conditions: advanced age and anatomical location, typical for BCC, one may speculate that the development of BCC within rhinophyma is rather a simple coincidence. However, more numerous series of patients with rhinophyma are needed to clear the controversy of BCC within rhinophyma hypertrophic tissue. PMID:34849134 | PMC:PMC8610061 | DOI:10.5114/ada.2020.99367 {url} = URL to article
    • Postepy Dermatol Alergol. 2021 Oct;38(5):903-905. doi: 10.5114/ada.2020.94743. Epub 2020 Apr 25. NO ABSTRACT PMID:34849142 | PMC:PMC8610035 | DOI:10.5114/ada.2020.94743 {url} = URL to article
    • Cutis. 2021 Oct;108(4):E5-E10. doi: 10.12788/cutis.0377. ABSTRACT Noninfectious facial papular granulomas can be the presentation of several conditions, including granulomatous periorificial dermatitis, granulomatous rosacea, lupus miliaris disseminatus faciei, and papular sarcoidosis. Although these entities are treated distinctly from one another, they share several clinical and histological characteristics. We present 2 cases of facial papular granuloma: one patient presented with granulomatous rosacea, and the other had a presentation consistent with sarcoidosis but also demonstrated features of granulomatous periorificial dermatitis and had a protracted course of treatment. Such cases exemplify heterogeneity in the evaluation and management of this cutaneous lesion and highlight the necessity of appreciating its various potential causes. PMID:34847006 | DOI:10.12788/cutis.0377 {url} = URL to article
    • J Clin Aesthet Dermatol. 2021 Jul;14(7):16-21. Epub 2021 Jul 1. ABSTRACT BACKGROUND: Rosacea is a difficult-to-manage chronic inflammatory skin condition reported to have a negative psychosocial impact on patients. Novel approaches are sought to target the many signs and symptoms of the condition while also improving the quality of life of patients. OBJECTIVE: We assessed the efficacy of the Kleresca® biophotonic platform (KLOX Technologies Inc., Laval, Canada), which creates fluorescent light energy (FLE), to induce a novel form of photobiomodulation for treating rosacea. We also assessed patient satisfaction with their facial appearance and concerns about perceptions of others before and after treatment. METHODS: Nine patients were treated once a week for four weeks with FLE. Patients and the treating clinician completed questionnaires throughout and after the treatment to grade the rosacea signs and symptoms and capture patients' perceptions of the treatment and their condition. RESULTS: FLE significantly reduced the inflammatory erythematous reaction of the face, improved flushing and erythema associated with rosacea, and had a positive impact on patients' self-perception and emotional wellbeing. CONCLUSION: Our results support FLE as an effective, noninvasive treatment modality for rosacea. PMID:34840644 | PMC:PMC8570353 {url} = URL to article
    • J Clin Aesthet Dermatol. 2021 Aug;14(8):14-21. Epub 2021 Aug 1. ABSTRACT Rosacea is one of the most common inflammatory skin diseases in the United States, with a complex pathophysiology. One of the major components of the pathophysiology of rosacea is an abnormal immune detection and response to stimuli. Tetracyclines and their derivatives, including minocycline and doxycycline, have anti-inflammatory properties independent of their antibacterial activity that correlate with certain aspects of the pathophysiology, and these drugs are often used by dermatologists to treat rosacea. Biological actions of tetracyclines correlating with rosacea include anti-inflammatory and antioxidative activities, inhibitory effects on angiogenesis, and proteolysis. The objective of this review is to re-establish the current understanding of tetracyclines and their mechanism of action as they relate to the pathophysiology and treatment of rosacea for clinicians. This includes reviewing the inflammatory aspects of rosacea that correlate with the known nonantibiotic properties of tetracyclines and providing the most up-to-date clinical evidence supporting the use of tetracyclines to treat rosacea. Given the evolving and multifactorial nature of pathophysiology, this review offers clinicians a unified picture that includes research on the links between rosacea pathophysiology and clinical presentation, the nonantibiotic properties of tetracyclines that relate to pathophysiologic pathways in rosacea, and the potential for clinical application of tetracyclines in rosacea therapy. PMID:34840653 | PMC:PMC8570659 {url} = URL to article
    • Clin Dermatol. 2021 Oct 27:S0738-081X(21)00216-9. doi: 10.1016/j.clindermatol.2021.10.004. Online ahead of print. ABSTRACT Rosacea is a common chronic inflammatory cutaneous disorder, primarily manifesting on the cheeks, nose, chin, and forehead with a classic relapsing-remitting course that affects mostly fair skin types (Fitzpatrick I and II). The pathogenesis remains unclear, but the complex interplay between environmental and genetic factors may augment the innate immune response and neurovascular dysregulation. Different nutrients may play a role in the pathogenesis of rosacea. Many dietary triggers, including hot beverages, alcohol, spicy foods, caffeine, vanilla, cinnamon, niacin, marinated meats, and dairy products, have been postulated for this disease; however, there is a lack of well-designed and controlled studies evaluating the causal relationship between rosacea and dietary factors. We have explored the available evidence and hypotheses based on trigger-food categories of rosacea, the role of the skin-gut microbiome axis, and potentially benefiting dietary factors such as probiotics, prebiotics, and high-fiber diets. PMID:34819228 | DOI:10.1016/j.clindermatol.2021.10.004 {url} = URL to article
×
×
  • Create New...