Rosacea Research Foundation An Editorial by Brady Barrows

The Rosacea Research Foundation announced its formation on January 26, 2005 with a well put together organization. source However, by December 2005 it announced is dissolution. The non profiit organization was registered in Alabama and stated that everyone on the board of directors and the medical advisory committee were volunteers. What an amazing accomplishment in so short a time and such a sad story, as you shall see.

Did you notice how much money had been donated and posted on the site? Within a few months the RRF collected over $18K from rosaceans, mainly by appealing for money at David Pascoe's yahoo rosacea support group. Three groups were mentioned in the structure of the RRF; a board of directors, a medical advisory committee and supporters. This is basically how the NRS is organized. The NRS and RRF non profit organizations both have board of directors that without a doubt function with the absolute power, while the medical advisory committee apparently advises the board of directors. The 'supporters' of the RRF are simply donors who apparently had no legal voting rights. The only difference is that the RRF board of directors was composed of rosaceans and who they were was public knowledge. (The NRS board of directors is not mentioned anywhere on their web site and without a doubt are not rosaceans, since so little information about the board of directors of the is NRS available to the public.)

Who would ever have imagined that such an organization would spring up like this for rosaceans? How did they come up with such a novel idea? What was the original purpose of forming the RRF?

Notice who posted an interesting suggestion on July 31, 2002 on rosacea-support about 'Pascoe for President.' It took over two and a half years but it happened! When the history is recorded on rosacea non profits (and it has already begun to be written) the RRF will be recorded as having been the second non profit organization formed by rosaceans for rosaceans (the first one was formed in June 2004).

How did this come about? A historic post was made on November 23, 2002, and a yahoo group was formed. The RRDi was formed in June 2004 in the state of Hawaii. These historic events led to the formation of the RRF, due to a chat session organized in November 2004 by Warren Stuart which was attended by some who later formed the RRF. These are documented and recorded events that have not been deleted or forgotten in rosacea non profit organization history.

However, in June of 2005 there were some problems within the RRF. The board of directors and the medical advisory board had some major changes. In October of 2005 the RRF announced a joint venture with the NRS on a research grant. This made the RRF basically as second way to donate to the NRS. So during this period, October through December the choices a rosacean could have made if they wanted to donate to the NRS were the following:

1. Donate to the NRS and specify that you want your donation to be used specifically for rosacea research.

2. Donate to the RRF and 75% of your donation will go to the NRS for rosacea research. The RRF had this quote on its donation page:

"We are committed to spending at least 75% of donations directly funding rosacea research." source

This joint venture with the NRS disappointed many rosaceans. What was originally thought to be novel rosacea research beyond the NRS was simply another way for the NRS to get money and if you wanted your donation to go to the NRS 25% remained with the RRF.

On October 12, 2005 it was announced, "The RRF has paid $11,800 to the NRS, who has passed this money on the successful grant applicants. This is the first half of the required and awarded $23,600. The RRF is unable to provide all of the required remaining funds, so the NRS will cover the difference." source

On December 10, 2005 the RRF made this announcment:

"The RRF has divested itself of all available funds by making a further contribution of $4265.32 towards the approved research grant that was announced on October 12."

source > http://rosacea-research.org/news.htm

So here is the rough accounting:

Total Funds Received: $18,211
Total Sent to the NRS: $16,065
Balance unaccounted for: $2,146

Assuming that the NRS will use the $4265 for research that means that 88% of the total funds received went to the NRS. At least the RRF made good their promise to spend at least 75% of donations on rosacea research, which is more than the NRS can say. However, the RRF has clearly given its support to the NRS not mentioning even an honorable mention to the RRDi.

It is worth noting that the thank you letter from Sam Huff, Director of the NRS, to the RRF said that owning Glendale Communications is not a conflict of interest and that 12% of funds are spent on 'administration and fundraising.' source >

http://rosacea-research.org/pdfs/NRSThankYou.pdf

However, the Form 990s over the past several years show otherwise and I have been writing about this for several years at this editorial.

In December, 2005 the RRF made this announcement:

"The Rosacea Research Foundation is no longer accepting donations.  Please support the National Rosacea Foundation's excellent research grant program."

And finally on December 1, 2005 this statement:

"The RRF is no longer accepting donations and is winding down with the aim of filing our disolution papers by December 31." source

Thus ends a sad chapter in rosacea non profit history.

However, there is still an alternative for rosaceans >

http://www.irosacea.org