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Why Form Another Non Profit Organization For Rosacea?


Brady Barrows
  • 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 on private contractors leaving little funds for rosacea research. 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.

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) but 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 these Form 990 reports that the NRS files with the IRS.

For instance, in 1998 the NRS received in donations $1,148,375 (only 2.15% of this amount was from the public, 97.85% of this amount came from pharmaceutical companies) and of this total amount spent only $16,118 (1.5%) on rosacea research. [1] To put this in a 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. 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]

In 2010 the NRS reports on its web site that it spent $71,364 on research grants. This would mean that for every dollar donated to the NRS in 2010 only 11 cents was spent on rosacea research. This same form reveals that Mr. Huff received $115,583 from Glendale and Park. Glendale and Park received $398,344 of the total donations received which was $617,974. So for 2010 Glendale and Park received 64% of the total donations received.

Here are graphs of income and expenses over a sixteen year period:
NRS1998-2013.png

I announced my findings in the various online rosacea groups on the internet at the time, as well as my own personal web sites. After discussing this with some fellow rosacea sufferers I formed the RRDi in 2004 with some help from those who felt the same way and received 501 c 3 recognition from the IRS. However, I also learned that volunteering isn't for everyone. Very few volunteer for long term and many live busy lives and cannot volunteer as much as they would like. Even if one can't volunteer a rosacean can join the RRDi and/or donate even a small amount. Every dollar will help keep this organization going if you care about having a non profit run by rosaceans who won't spend the donations primarily on private contractors. And so far, everyone is a volunteer in the organization. If you think this is the way a rosacea non profit organization should be run then please join or donate.

The charter, mission statement, rules, by laws, and policies of the RRDi are public knowledge, unlike that of the NRS which is a secret non profit that does not disclose how the non profit organization is run. There is no known public charter, by-laws or rules published by the NRS. [3] The RRDi has published one edition of its Journal. [4] This was an effort to raise funds and increase donations. We would like to engage in more publications like our journal as well as publish rosacea research papers that we sponsor from donated funds. Or you could post your thoughts on our financial reports in this thread. Just click the reply button if you are a member. 

If you think the RRDi is a good idea then please join, donate or volunteer. You could begin your volunteer spirit by reading this post how the RRDi is in the forefront of the digital medical revolutionYou may want to read our post about Anonymity, Transparency and Posting before joining.

My posts and comments about the NRS for succeeding years are listed in the end notes. [5]

Brady Barrows RRDi Director

End Notes

[1] NRS Form 990 for 1998

[2] NRS Form 990 Spreadsheet 1998 thru 2014

[3] The RRDi publishes on its web site how the organization is run. Search and see if you can discover how the NRS is run? Who determines who runs the organization? Is the public involved in any of the decisions? Do those who suffer from rosacea run the organization or have any say on who runs the organization?
RRDi Official Documents

[4] http://www.irosacea.org/journal/

[5] 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.

Edited by Brady Barrows



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