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 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
      1,534
    • Most Online
      499

    Newest Member
    Anna Strangway
    Joined
  • Posts

    • J Dermatolog Treat. 2021 Jul 22:1-8. doi: 10.1080/09546634.2021.1959507. Online ahead of print. NO ABSTRACT PMID:34291712 | DOI:10.1080/09546634.2021.1959507 {url} = URL to article
    • Front Immunol. 2021 Jul 5;12:674871. doi: 10.3389/fimmu.2021.674871. eCollection 2021. ABSTRACT Rosacea is a common chronic inflammatory condition that mainly affects the central face. However, the molecular background of the normal central face and the transcriptional profiling and immune cell composition of rosacea lesions remain largely unknown. Here, we performed whole-skin and epidermal RNA-seq of central facial skin from healthy individuals, lesions and matched normal skin from rosacea patients. From whole-skin RNA-seq, the site-specific gene signatures for central facial skin were mainly enriched in epithelial cell differentiation, with upregulation of the activator protein-1 (AP1) transcription factor (TF). We identified the common upregulated inflammatory signatures and diminished keratinization signature for rosacea lesions. Gene ontology, pathway, TF enrichment and immunohistochemistry results suggested that STAT1 was the potential core of the critical TF networks connecting the epithelial-immune crosstalk in rosacea lesions. Epidermal RNA-seq and immunohistochemistry analysis further validated the epithelial-derived STAT1 signature in rosacea lesions. The epidermal STAT1/IRF1 signature was observed across ETR, PPR, and PhR subtypes. Immune cell composition revealed that macrophages were common in all 3 subtypes. Finally, we described subtype-specific gene signatures and immune cell composition correlated with phenotypes. These findings reveal the specific epithelial differentiation in normal central facial skin, and epithelial-immune crosstalk in lesions providing insight into an initial keratinocyte pattern in the pathogenesis of rosacea. PMID:34290700 | PMC:PMC8287635 | DOI:10.3389/fimmu.2021.674871 {url} = URL to article
    • Med Res Rev. 2021 Jul 21. doi: 10.1002/med.21842. Online ahead of print. ABSTRACT The sesquiterpene lactone artemisinin from Artemisia annua L. is well established for malaria therapy, but its bioactivity spectrum is much broader. In this review, we give a comprehensive and timely overview of the literature regarding the immunosuppressive activity of artemisinin-type compounds toward inflammatory and autoimmune diseases. Numerous receptor-coupled signaling pathways are inhibited by artemisinins, including the receptors for interleukin-1 (IL-1), tumor necrosis factor-α (TNF-α), β3-integrin, or RANKL, toll-like receptors and growth factor receptors. Among the receptor-coupled signal transducers are extracellular signal-regulated protein kinase (ERK), c-Jun N-terminal kinase (JNK), phosphatidylinositol-4,5-bisphosphate 3-kinase (PI3K), AKT serine/threonine kinase (AKT), mitogen-activated protein kinase (MAPK)/extracellular signal regulated kinase (ERK) kinase (MEK), phospholipase C γ1 (PLCγ), and others. All these receptors and signal transduction molecules are known to contribute to the inhibition of the transcription factor nuclear factor κ B (NF-κB). Artemisinins may inhibit NF-κB by silencing these upstream pathways and/or by direct binding to NF-κB. Numerous NF-κB-regulated downstream genes are downregulated by artemisinin and its derivatives, for example, cytokines, chemokines, and immune receptors, which regulate immune cell differentiation, apoptosis genes, proliferation-regulating genes, signal transducers, and genes involved in antioxidant stress response. In addition to the prominent role of NF-κB, other transcription factors are also inhibited by artemisinins (mammalian target of rapamycin [mTOR], activating protein 1 [AP1]/FBJ murine osteosarcoma viral oncogene homologue [FOS]/JUN oncogenic transcription factor [JUN]), hypoxia-induced factor 1α (HIF-1α), nuclear factor of activated T cells c1 (NF-ATC1), Signal transducers and activators of transcription (STAT), NF E2-related factor-2 (NRF-2), retinoic-acid-receptor-related orphan nuclear receptor γ (ROR-γt), and forkhead box P-3 (FOXP-3). Many in vivo experiments in disease-relevant animal models demonstrate therapeutic efficacy of artemisinin-type drugs against rheumatic diseases (rheumatoid arthritis, osteoarthritis, lupus erythematosus, arthrosis, and gout), lung diseases (asthma, acute lung injury, and pulmonary fibrosis), neurological diseases (autoimmune encephalitis, Alzheimer's disease, and myasthenia gravis), skin diseases (dermatitis, rosacea, and psoriasis), inflammatory bowel disease, and other inflammatory and autoimmune diseases. Randomized clinical trials should be conducted in the future to translate the plethora of preclinical results into clinical practice. PMID:34288018 | DOI:10.1002/med.21842 {url} = URL to article
    • An Bras Dermatol. 2021 Jul 15:S0365-0596(21)00173-2. doi: 10.1016/j.abd.2021.02.004. Online ahead of print. ABSTRACT BACKGROUND: The frequency of autoimmune diseases and thyroid cancer has been increasingly reported in association with rosacea. However, studies investigating thyroid diseases in rosacea are scarce with conflicting results. OBJECTIVE: To investigate the relationship between thyroid disorders and rosacea. METHODS: A large case-control study on age- and gender-matched 2091 rosacea patients and 9572 controls was conducted. Rosacea patients using the rosacea-specific ICD codes were compiled from the hospital records. Additionally, all participants were evaluated in terms of the presence of hypothyroidism and hyperthyroidism. Conditional logistic regression analysis was used to compute case-control odds ratios (OR) with 95% confidence intervals. RESULTS: The analysis comprehended 2091 rosacea patients (1546 female, 545 male; mean 48.73 ± 14.53 years) and 9572 controls (7009 female, 2563 male; mean 48.73 ± 15.1 years). Whereas the rate of hypothyroidism was significantly higher in rosacea patients (OR = 1.3, 95% CI 1.13-1.49, p < 0.001), there was no significant difference in the rate of hyperthyroidism between the groups (OR = 1.12, 95% CI 0.81-1.53, p = 0.497). Stratification for genderrevealed a significant association between hypothyroidism and rosacea in females (OR = 1.27, 95% CI 1.1-1.47, p = 0.002) and males (OR = 1.58, 95% CI 1.04-2.4, p = 0.032). The frequency of hypothyroidism in rosacea patients increased towards the age range of 40-49 and then decreased, parallel with the hypothyroidism frequency of the study population. STUDY LIMITATIONS: Different subtypes and severities of rosacea were not distinguished. CONCLUSIONS: Hypothyroidism may be a comorbidity of rosacea and investigation for hypothyroidism may be appropriate when evaluating rosacea patients. PMID:34275693 | DOI:10.1016/j.abd.2021.02.004 {url} = URL to article
    • Clin Cosmet Investig Dermatol. 2021 Jul 6;14:779-814. doi: 10.2147/CCID.S315711. eCollection 2021. ABSTRACT Dermal filler treatments require constant reassessment for improving and safeguarding the rapidly evolving aesthetic field. Suboptimal injection technique, patient selection and product knowledge have touted a concerning increase in filler complications, with new challenges such as the COVID-19 pandemic leading to new paradigms in the understanding, prevention, diagnosis and treatment of complications. The updated 10-point plan has been developed to curtail complications through consideration of causative factors, categorized as patient, product, and procedure-related. Patient-related factors include a preprocedural consultation with careful elucidation of skin conditions (acne, rosacea, dermatitis), systemic disease (allergies, autoimmune disease, underlying bacterial and viral disease (herpes simplex virus, COVID-19 infection), medications (antineoplastic drugs, recreational drugs) and previous cosmetic procedures (including fillers and energy-based devices). Patient assessment should include standardized photography and also evaluate the role of social media, ethnicity, gender, generational, and LGBTQ+ needs. Specified informed consent for both adverse events and their treatment is essential due to the increase in vascular complications, including the risk of blindness. Product-related factors include the powerful advantage of reversibility when using hyaluronic acid (HA) products. Product characteristics such as molecular weight and filler degradation should be understood. Product layering over late or minimally degradable fillers is still inadvisable due to the initial filler being teased into reactivity. Procedural factors such as consistent photographic documentation, procedural planning, aseptic non-touch technique (ANTT), knowledge of topographical anatomy and angiosomes, and technical dexterity including pinch anatomy and needle skills are of pivotal importance. The final section is dedicated to algorithms and checklists for managing and treating complications such as allergic hypersensitivity reactions, vascular events, infection, edema and late-onset adverse events (LOAEs). The updated 10-point plan is a methodical strategy aimed at further minimising the risk of dermal filler complications. PMID:34276222 | PMC:PMC8279269 | DOI:10.2147/CCID.S315711 {url} = URL to article
    • J Am Acad Dermatol. 2021 Jul 10:S0190-9622(21)02012-0. doi: 10.1016/j.jaad.2021.06.865. Online ahead of print. NO ABSTRACT PMID:34274412 | DOI:10.1016/j.jaad.2021.06.865 {url} = URL to article
    • The RRDi is pleased to announce a new page, Rosacea Episodes. 
    • J Neuroophthalmol. 2021 Jul 13. doi: 10.1097/WNO.0000000000001290. Online ahead of print. NO ABSTRACT PMID:34270518 | DOI:10.1097/WNO.0000000000001290 {url} = URL to article
×
×
  • Create New...