Rosaceans Want the Truth
an editorial
Copyright 2010 Brady Barrows
Do rosaceans want the truth? Of course they do! They want to know if there is a cure for rosacea. They want to know if anyone out there is telling them the truth about rosacea. Is anyone researching rosacea to find the cure? What kind of research is going on with rosacea? Who is doing this research? Who is paying for this research? Who is funding this research? What are their motives for doing the research? Who is making a profit on rosacea research? Who is making a profit on treating rosacea? Is there any reliable source to the answers to these questions? Do rosaceans want the answers to these questions? Do rosaceans want the truth? Of course they do.
Since 1999 I have been associated with the various rosacea support groups on the internet and began my writing and webmaster career with the Rosacea Diet. [1] Since I quickly discovered that I got some positive feedback with this diet, I still received some reports the rosacea diet didn’t work for them and wrote an editorial on the X Factor in rosacea. [2] This X Factor Syndrome is when treatment for rosacea works well in controlling rosacea in one rosacea patient, however, in another rosacea patient the same treatment doesn’t work. What is the X Factor in the success of certain treatments for rosacea in some and it doesn’t work for others? This unknown factor is the X Factor. Because of this unknown factor in rosacea many want more knowledge about rosacea. They turn to the internet and rosacea authorities for the truth. Over the years various authorities have come forward over the internet claiming such authority. Books have been promoted over the years by rosacea authorities. I even wrote a comprehensive 373 page book on the subject of rosacea. [3] However, one rosacea authority stands out, the National Rosacea Society (NRS), a non profit organization founded in 1992. Particularly since 1998 they have sponsored and funded rosacea research and have done some good for rosacea sufferers. [4]
Another non profit organization, The American Acne and Rosacea Society (AARS), [5] founded in 2005 has also promoted some rosacea research as well and is in second place with the NRS. What this rosacea research entails is not known yet since the $30K spent on rosacea research funding to three physicians in 2008 has not been released. [6]
In 2005 another now defunct non profit organization, the Rosacea Research Foundation, donated $16,065 to the NRS. [7] The founder of this now defunct non profit, David Pascoe, clearly supports the NRS. In a blog editorial David Pascoe wrote about Galderma I posted a comment about how Galderma contacted me about becoming an educational partner with the RRDi and David commented that the NRS has Galderma for an educational partner for years. I commented about the NRS and David refused to allow my comment on his blog and told me that I can’t discuss the RRDi or the NRS on any of his web sites. Click here if you would like to read my comment.
So the foremost non profit organization engaging in rosacea research is the NRS because no one has come close to the amount of rosacea research funded by this non profit organization for rosacea. From 1998 through 2009 the NRS has spent $962,696 on 45 reported grants. However, of these 45 grants only nine have been known to be published. [7] During the period from 1998 through 2008 the NRS received in donations $8,571,634 and spent a total of $873,246 on rosacea research. That means that about 10% of total donations was spent on research. That means that of every dollar donated to the NRS about ten cents is spent on research. [9] So who is the NRS? Who runs this organization? A board of directors. [10] Who decided who is on the board of directors? The charter, by laws, and rules of the NRS are not known or published so the answer on how this board of directors are chosen is unknown. Does the public have a say in who sits on this board of directors? As of this date there is no known way for the public to have any say on who sits on the board of directors of the NRS.
How were the rest of the funds of the NRS spent over the same period of 1998 through 2008 that was not spent on rosacea research used? The Form 990s over this same period reveals some clues. One expenditure stands out and that is that 60% of the $8,571,634 donated to the NRS was spent on independent contractors [11] to the NRS and these independent contractors are all owned by the director of the board of directors of the NRS, Sam Huff. [12]
Do rosaceans want the truth about all this? Of course they do. They want to know how $8,571,634 was spent over an eleven year period by the NRS. They want to know if the donated funds are being wisely used. They especially want to know how much of the donated funds are being spent on rosacea research and on what research and who is doing this research. The NRS clearly reports all of this and the bottom line is that 10% of the funds are spent on rosacea research over the eleven year period from 1998 through 2008. For an update on how the NRS reported revenue and spending in 2009 click here.
Since following the history of the NRS I began a campaign to start a new non profit organization for rosacea research on July 31, 2002 with a post on RS [13] and another post November 23, 2002. [14] In 2004 a historic chat occurred that was organized by Warren Stuart who invited many rosacea internet personalities together to discuss forming a non profit organization. A brief nutshell version of what happened I posted on the internet. [15] The result of that chat resulted in the formation of the RRF [16] under the direction of David Pascoe, now defunct, and the RRDi under my direction. [17] If you are interested in the history of the RRDi it is posted for all to read. [18] The motive for forming the RRF and the RRDi was that rosaceans wanted a non profit organization that spends the majority of its funding on rosacea research, not on independent contractors and to have a say on who sits on the board of directors. That is what rosaceans want. That is the truth. And the truth is what rosaceans want.
Where does the NRS get its donations? According to the NRS [19] in 2008 it received from individual donations $127,055 and $625,678 from educational grants. Another $5052 was received from investment income making a total of $757,875 in funds received. How much did the NRS spend on rosacea research in 2008. Form 990 showed that only $87,500 was spent on rosacea research while the NRS web site claims it was $102,036. Depending on whether you believe Form 990 or the NRS web site financial page the donated funds in 2008 were either 11.5% or 13.4% of the total received funds was spent on rosacea research. Form 990 does reveal that $518,768 was spent on two independent contractors [20] which are both owned by Sam Huff, the director of the NRS which is 67% of the total funds received. For an update on the NRS revenues and expenses for 2009 click here.
Do rosaceans want the truth? Of course, rosaceans want the truth.
Sources
[1] Rosacea Diet by Brady Barrows
iUniverse 2003
[2] X Factor Syndrome in Rosacea -
an editorial by Brady Barrows
Copyright 2003
[3] Rosacea 101: Includes the Rosacea Diet
by Brady Barrows
iUniverse 2007
[4] www.rosacea.org
[6] www.rosaceans.com/aars.php
[8] Questions About Rosacea Research Grants
see also
Sam Huff, Glendale & the NRS
[10] www.rosacea.org/about/organization_board_of_directors.php
[11] Glendale Communications Group, Inc.
Park & Mailing Services, Inc.
Sam Huff & Associates, Inc.
[12] see source 9
[13] http://health.groups.yahoo.com/group/rosacea-support/message/41711
[14] http://health.groups.yahoo.com/group/rosacea-support/message/45024
[15] http://www.rosaceagroup.org/The_Rosacea_Forum/showthread.php?t=19870&page=5
scroll to post #47
[17] www.irosacea.org
[18] www.irosacea.org/history.php
[19] www.rosacea.org/about/financial.php
rosacea
on Sep 30th, 2011
@ 11:02 pm:
Does any one else get Rosacea flare ups attributed to white wine?
admin
on Dec 19th, 2011
@ 9:47 am:
Alcohol, particularly wine is just about on every rosacea trigger list. For more info on rosacea triggers.