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1998 - The Banner Year for the NRS

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It was twenty years ago today, that the NRS began to play. Yes in 1998 the NRS received in donations $1,148,375 (over a million dollars!). 1998 was the banner year for donations to the NRS since after that year the NRS has never topped that year for donations. 

Of this amount donated in 1998, 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. That means that for every dollar donated in 1998 only 1.5 cents was spent that year on rosacea research. When I discovered this over fifteen years ago it was the chief reason I formed the RRDi. Can you imagine receiving over $1.1 million dollars and only spending 1.5% on rosacea research? You don't have to imagine it, read the reality. If you want to know more, read this post on NRS Form 990 Reviews

 If the RRDi received that kind of money we would hand out over a million dollars to researchers!  If the RRDi had that kind of money to spend, imagine the impact the RRDi would have on the medical community. In this case, you do have to imagine it, because the reality is very sad indeed. 

The reality is that rosaceans could care less how the NRS spends its money. Rosaceans continue to support the NRS with their donations while the NRS spends more of its money, the majority (60%) on two private contractors that are owned by the president/director of the NRS, Sam Huff. 

The RRDi has over 1150 members who don't post or take an active part in this non profit organization formed by rosacea sufferers. You would think that there would be some active participants who would want to do something about the direction rosacea research is going and be instrumental in participating in a discussion about finding a cure for rosacea, but alas, nothing but silence. I feel like a lone voice in the wilderness of rosacea redness and I keep crying out for help. No one cares. Very, very sad. 

If some of the members don't step up the plate and become active, the RRDi may fade away, not like your rosacea, but into the pale twilight of obscurity. I appeal to our members, POST! Become active! Do something with the RRDi.....the very least you can do is post something?  Just post and be active. 

If you don't know how to post, use the contact form and explain the issue and I will personally help you be able to post. This forum isn't that complicated to use. I will be happy to help you understand how to post. I need your assistance. 

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Keep up the good work Brady. I read a lot of your posts and appreciate the effort you put it. 

Rosacea is tough, but  it helps me immensely to read the stories of others. I will be donating to the rrdi very soon. 

I encourage other rosaceans to do the same. 

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On 5/3/2018 at 5:11 PM, D-Mac said:

Keep up the good work Brady. I read a lot of your posts and appreciate the effort you put it. 

Rosacea is tough, but  it helps me immensely to read the stories of others. I will be donating to the rrdi very soon. 

I encourage other rosaceans to do the same. 

Thanks D-Mac, 

Welcome aboard the RRDi member forum. Keep posting and mucho mahalo for your donation. 

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If others don't volunteer and work together for rosacea patient advocacy then rosaceans deserve what they get with the NRS and the AARS which are the only non profits doing any rosacea research. And what kind of research do these organizations do? Who donated primarily to the these organizations? Pharmaceutical companies. And what kind of research do they engage in? You guessed it. Here is a quote from my book I wrote in 2007 on page 82: 

"Dr. Kligman mentions the 'indifference of the National Institutes of Health, which with an annual budget of nearly 30 billion dollars, has not seen fit to fund a single grant for the investigation of rosacea.' Dr. Kligman also says that most research done on rosacea is by the skin industry which is 'voluminous literature, mainly focused on treatments sponsored by commercial interests; perhaps not the most credible source of unbiased research.' ”

A Personal Critique on the State of Knowledge of Rosacea, Albert M. Kligman, M.D., Ph.D.
Department of Dermatology, University of Pennsylvania, Philadelphia, PA, U.S.A.

publikation_kligman.pdf

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