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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 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 two of the board members of the non profit organization who also serve on the board of directors? Or should the non profit for rosacea spend most of its donations on its board members who benefit, comprised mostly of dermatologists and business men who serve on the board of directors, i.e., meetings for members or conventions for dermatologists? Should the skin industry benefit from the activities of the rosacea non profit?  Who do you think should benefit from the rosacea non profit? (1) Dermatologists, (2) Business Men, (3) Rosacea Sufferers?

    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. Some 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 was the director of the NRS and served on the board of directors. 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. (requires subscription to view)

    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, a board member of the NRS or Andrew Huff who also sits on the board of directors of the NRS. From 2001 on, the name of the private contractor was changed to Glendale Communications Group, Inc., owned by Sam Huff or his son Andrew, and Park Mailing and Fulfillment, Inc., also owned by Sam Huff or his son Andrew (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 (requires subscription to view).

    The Canadian ARSC non profit doesn't disclose what it spends is donations on so we have no idea what it does (requires subscription to view). 

    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 (2016 thru to the latest year report)

    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 to the latest Form 990 year provided by the NRS (over twenty plus years)

    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

    nrs_990_2020.pdf



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    • Our members mostly are inactive. There a handful of subscribers which means they could post in our forum, however, no one posts. Rosaceans prefer to post in social media rather than here in this forum. Unless someone donates at least $1K we can't keep the lights on (our website). Every year the costs associated with the website go up.  I have given up on trying to get subscribers to post. We may simply have to dissolve this non profit patient advocacy for rosaceans since volunteering is simply not what rosaceans want to do and prefer to just hang out in social media platforms and post there.  If you have anything to say about this, why not find the reply button and post your thoughts. 
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