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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 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] 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.

       

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        Idiopathic facial aseptic granuloma is a childhood condition characterized by asymptomatic erythematous-violaceous nodules, often confused with abscesses. Its pathogenesis is unknown, but some authors have postulated its relationship with infantile rosacea. We present a case of a patient with a clinical diagnosis of idiopathic facial aseptic granuloma, with ocular involvement and a good response to oral metronidazole treatment.
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        Flare up according to the NRS is "a more intense outbreak of redness, bumps or pimples.."  

        Tripwire or Trigger is the same thing according to the NRS who uses these words interchangeably and states that both terms mean, "factors that may cause a rosacea sufferer to experience a flare-up—a more intense outbreak of redness, bumps or pimples. [1]

        A medical dictionary source defines flush as: flush 1. transient, episodic redness of the face and neck caused by certain diseases, ingestion of certain drugs or other substances, heat, emotional factors, or physical exertion. See also erythema. [2]

        A blush is a flush usually caused by psychological factors. A flush can be caused by a any number of factors as noted above including psychological factors. 

        The reason this is brought up is that while most rosaceans confuse flushing with a flare up there are rosaceans who report having a flare up of rosacea and DO NOT FLUSH. These ones are admittedly fewer in number, and flushing is usually associated with a flare up, but nevertheless demonstrates that flushing is not necessarily a rosacea flare up. One could flush or blush and the skin returns to normal in a rosacea sufferer. Flushing does not NECESSARILY mean a rosacea flare up and it only means that it MAY produce a rosacea flare up. Those who think flushing is rosacea is like thinking pimples mean you have rosacea (or for that matter, believing that erythema is rosacea). There is more to a diagnosis of rosacea than simply having pimples and erythema (see Diagnosis). For example, one could have erythema and have Atopic Dermatitis, not rosacea.  Flushing is one of the signs or symptoms usually associated with rosacea, but not necessarily required. Pimples are associated with rosacea but not necessarily required, i.e., Phenotype 2. Rosacea is always associated with redness or erythema.  Hopefully, if rosaceans understand these terms, trigger, tripwire, flareup and flush better, we will all be on the same page when we discuss rosacea. 

        End Notes

        [1] Coping With Rosacea, National Rosacea Society, page 1

        [2] Dorland’s Illustrated Medical Dictionary
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