NRS Form 990 Report for 2004

[Brady Barrows]

The National Rosacea Society Form 990 Report
for 2004 filed to the Internal Revenue Service has been
released for public inspection and here is a breakdown
of last year's public filing:

total income > $555,770
total expenses > $642,816
net assets at
end of year > $258,399

total spent on research grants > $85,307

That means 15% of the total income was spent on
research in 2004. But one item keeps sticking out
in the report is the expense listed in Schedule A,
Part II Compensation of the Five Highest Paid
Independent Contractors for Prefessional Services
paid to one name, Glendale Communications Group,
Inc., 800 S NW HWY, Barringon, IL. in the amount of
$365,398. This expense amounts to over 65% of the
total income. Glendale Communications is owned by
Sam Huff, President of the National Rosacea Society.

Since I have been following this for several years,
you might be interested at how the NRS has
been doing over the past seven years:

For the past senen years the NRS has received in donations a total of $5,569,108 and spent a total of $463,622 on rosacea research. That means that about 8% of total donations was spent on research. That means that of every dollar donated to the NRS eight cents is spent on research and the rest is used to run the organization and provide the services mentioned above in the first paragraph. An interesting expense is mentioned in Part II - Compensation Paid to the Five highest paid independent contractors for professional services to Glendale Communications Group, Inc. owned by Samuel B. Huff, the Director of the National Rosacea Society. The total amount given to Glendale Communications Group, Inc. for the last seven years amounted to $3,368,592.

For a complete editorial of this go to this url >

http://www.rosaceans.com/html/nrs.html

If you want to do something about this go to this url >

http://www.irosacea.org

[Bob Bear]

Please excuse me French, but, WANKERS!

Thanks for bringing this to our attention Brady. Out of curiosity, who are the main groups involved in donating to this organisation? I sincerely hope it isnt private sufferers, thinking their money is going to a good place (you dont want to get Big Bob Bear mad :twisted: :lol: ).

[Brady Barrows]

Please excuse me French, but, WANKERS!

Thanks for bringing this to our attention Brady. Out of curiosity, who are the main groups involved in donating to this organisation? I sincerely hope it isnt private sufferers, thinking their money is going to a good place (you dont want to get Big Bob Bear mad :twisted: :lol: ).

Bob Bear,
I have been shouting this to the world for several years. Form 990 does not require any information on who donates. The only requirement is to disclose whether donations are from the public and the NRS does receive money from the public. I doubt seriously if a significant portion of the donations are from rosaceans, but obviously some rosaceans who never look at the FORM 990 that the NRS reports may donate. I personally think most of the donations come from pharmaceutical companies like Galderma, Berlix and Steifel. Unless the NRS volunteers the information we will never know. But the law does not require non profits to disclose who the donors are to the public. But it does require reporting the top five independent contractors and the top five compensated officers of the company. The NRS reports that the officers receive zero compensation, but Glendale Communications Group sure gets a significant portion of the money. I work for a non profit organization as a part time employee and the director of my organization received a salary of $55,000 in 2003. The next chief administrator received $45,000. The total administration received 6% of the total operating expense with a budget of over 2.4 million dollars. You should compare what other non profit organizations spend on administration and running the organization and what percentage of the budget actually goes to what the mission of the non profit is. Check the National Geographic Society which is one of the biggest non profits or the American Red Cross. You can get all this info at this url >

http://www.guidestar.org

[drnase]

Please excuse me French, but, WANKERS!

Thanks for bringing this to our attention Brady. Out of curiosity, who are the main groups involved in donating to this organisation? I sincerely hope it isnt private sufferers, thinking their money is going to a good place (you dont want to get Big Bob Bear mad :twisted: :lol: ).


Hi Brady and Bob,

First, thanks Brady. As for Bob's question, I do remember that Dr. Wilkin addressed this at least once in an NRS review article and the title was something like Rosacea Sufferers Help Fund their own Research and it gave a staggering number that rosacea sufferers had donated. They are the biggest donators I believe. Thus Glendale communications salary is totally unacceptable. They now did put in a short little blurb that if you want this to go to research then state that on the check...... or, something like that. YIKES, I thought that would be the only reason because rosacea awareness is somewhat helpful, but they can do that themselves. Rosacea awareness means Galderma awareness with their topicals or 1-800 number. Not really that helpful IMHO.

[creole65]

Before we all get too worked up, Brady is not saying that the NRS misleads by not doing what they say they will. They spend their budget according to their goals - education and promotion are a large part of that.

Donators have been able to specify that their donation be earmarked for research. This has been the case for years.

If people want something different they could always try to change the NRS or even start their own foundation - but the last time that was attempted, it ended in tears, so to speak.

[Brady Barrows]

Before we all get too worked up, Brady is not saying that the NRS misleads by not doing what they say they will. They spend their budget according to their goals - education and promotion are a large part of that.

Donators have been able to specify that their donation be earmarked for research. This has been the case for years.

If people want something different they could always try to change the NRS or even start their own foundation - but the last time that was attempted, it ended in tears, so to speak.

The history went like this in a nutshell:

June 2004 I founded the RRDi
http://www.irosacea.org

Warren Stuart joins in the fall of 2004 and helps organize a chat session that included Geoffrey Nase and others who want to help. Geoffrey initially was excited about all this and discusses with some other rosaceans who decided to form another non profit organization and leave the RRDi behind. The other non profit produces tears. The RRDi keeps plugging along.

Warren forms the www.rosaceagroup.org and then later this forum.

The RRDi finally receives enough donations to pay a CPA to properly fill out the application for 501 (c) (3) approval which has been sent to the IRS for approval and we are awaiting the decision. By the way, the RRDi did this on a shoestring budget and hours and hours of volunteer time. Once approval from the IRS has been obtained the RRDi can then legally apply for corporate donations which is a much better way to appeal for funding than to rely on rosaceans for money. The RRDi is composed of volunteer rosaceans. The board of directors are totally volunteer and cannot receive compensation since this is written in the articles of incorporation and the conflict of interest policy forbids board members from making ANY profit from the RRDI. The board of directors of the NRS have allowed Sam Huff to receive 65% of the total money received and there is no public information on how the NRS operates nor is there a published conflict of interest policy. The NRS gets away with this because they simply get away with it.

Now what if you found out that ANY non profit spent 65% of its funding to one individual corporation as an independent contractor? Would you still give a donation to that non profit designating that your donation is to be spent on rosacea research? What if the American Red Cross took 65% of its donations and gave it to one single independent contractor and you found out that this independent contractor was also the President of the American Red Cross? What part of this don't you understand?

Yes, the NRS spent last year 15% of its donations on rosacea research which is double what it has spent on rosacea research for the past seven years. I think they did this simply because I have been the lone watchdog on the NRS and began shouting this to the world for over three years. Yes, it does help rosaceans as its mission statement says it does so that legally it can still function. But good non profits spend an average of 15% of its total budget on administration, not 65%. Check guidestar.org to find out more. Goodness, a bunch of high school seniors could run the NRS better than Sam Huff. It doesn't take a Ph.D to understand that the NRS is not operating like it should and the doctors and researchers who accept funding from the NRS should be ashamed of themselves to accept funding from an organization run with this kind of a record. The research the NRS does is standard AMA practice for treating rosacea. There is nothing novel or exciting about the research done. You have no say whatsover in what research the NRS engages in, but I think Galderma has quite a say in what research is done.

The RRDi is not in tears and very happy thank you, and might I add has a very prestine and squeaky clean history. I have watchdogs all over me to be sure I don't have a conflict of interest with the RRDi. And if rosaceans want, the articles of incorporation allow corporate members to vote me out as the director and have whoever they want be on the board of directors. Can you do that with the NRS or any other rosacea non profit organization? Name the organization. The RRDi is the ONLY alternative for rosaceans that allows you to have ANY say in what research is being done. Do you really want to send your donation to the NRS and designate that it be spent on rosacea research? Go ahead.

[creole65]

If you want a group of recognized researchers, who have both a solid background in publishing peer reviewed articles on rosacea, and the connections in the academic world - how can anyone go past the Medical Advisory Board of the NRS ? They don't just talk about it, they do it and make it happen and have the runs on the board to prove it.

[creole65]

There is nothing novel or exciting about the research done. You have no say whatsover in what research the NRS engages in, but I think Galderma has quite a say in what research is done.


I'd like to see some proof to backup either of these statements.

Have you seen the 2004 grants from the NRS ? Have you seen the 2005 grants ? Are you sure you can make an argument about them not being novel or worthwhile ?

Where do you get your thoughts about Galderma having influence on the research ?

Your statement has as much status as me saying "I think Brady has no idea what he is talking about".

[Rick]

It doesn't take a Ph.D to understand that the NRS is not operating like it should and the doctors and researchers who accept funding from the NRS should be ashamed of themselves to accept funding from an organization run with this kind of a record. The research the NRS does is standard AMA practice for treating rosacea. There is nothing novel or exciting about the research done. You have no say whatsover in what research the NRS engages in, but I think Galderma has quite a say in what research is done.


I do not agree that those who accept NRS grants should be ashamed of themselves. They are doing us all a service by performing funded research in rosacea, as long as they have complete latitude to conduct independent research.

As an individual, if I contribute to any foundation like the American Cancer Society, obviously I have no say in the scope of research to be funded. That is why there are medical advisory boards. Personally, I see no issue whatsoever with Jonathan Wilkin, their MAB Director, driving their research agenda.

I accept your figures concerning the financials of NRS. But it worth noting that it is possible to contribute to the NRS and specify that 100% of your contribution go the Research Grants program.

Rick

[fanta]

There is nothing novel or exciting about the research done. You have no say whatsover in what research the NRS engages in, but I think Galderma has quite a say in what research is done.

Your statement has as much status as me saying "I think Brady has no idea what he is talking about".
that's not funny! :lol:

[drnase]

I think Brady and Rick both have good points.

On the one hand many rosacea sufferers dont know about how the resources are directed and this is way off balance with the NRS.

But, they are coming out with some good relevant studies -- the more the better.


I dont think the NRS is the answer though because it is one study at a time and this takes forever. If you compare the NRS to the National Psoriasis Foundation you will see a night and day difference. While it is good that the NRS is performing studies and headed by an excellent MAC, the main research center for a particular disorder should not come from a pharmaceutical company whose main profits are now from rosacea (now that is in a perfect world).

Take a look at the National Psoriasis Foundation. Wow!

http://www.psoriasis.org/home/

[Brady Barrows]

There is nothing novel or exciting about the research done. You have no say whatsover in what research the NRS engages in, but I think Galderma has quite a say in what research is done.


I'd like to see some proof to backup either of these statements.

Have you seen the 2004 grants from the NRS ? Have you seen the 2005 grants ? Are you sure you can make an argument about them not being novel or worthwhile ?

Where do you get your thoughts about Galderma having influence on the research ?

Your statement has as much status as me saying "I think Brady has no idea what he is talking about".

Here are the grants:

http://rosacea.org/grants/awards.html

http://rosacea.org/grants/reports.html

Which one excites you? If you notice, in 2004 thru 2001 Dr. Gallo received $25,000 each year (four years) for studying:

"Role of the innate immune system in rosacea."

Dr. Zhao studied this for two years and received $50,000:
"Molecular disease markers: gene expression profile of rosacea."

Dr. Martin Steinhoff and Dr. T. Luger studied basically the same research title two years in a row in 2003 and 2004 which was, "Role of proteases and PARS in rosacea" and received $50,000 ($25,000 each year).

Karol Lindow, RN studied "Perceptions of self in persons with rosacea" in 2001 and received $2,200 and in 2004 received $455.

Dr. Ethan A. Lerner studied "The Role of Nitric Oxide in Rosacea" in 2000
and received $25,000. Dr. Gallo studied the same subject in 2001 and 2002 and received $25,000 each year.

Dr. Granstein and colleagues were awarded $23,283 to continue research on "Effects of neuropeptides and sebocyte-derived factors on human dermal microvascular endothelial cells of the skin: A possible mechanism for the development of vascular and inflammatory lesions of rosacea." in
2003 and received the same amount in 2002 for the same research.

These are just some of the examples of the same research over and over which I find boring but maybe it excites you and others. I am sure that some of the research that the NRS engages in is worthy. The only point I am making is the NRS is not listening to rosaceans with their concerns and what rosaceans may want researched. I realize that a MAC is going to recommend what they feel is pertinent research and have more knowledge than the average rosacean laymen who knows zilch about research, like myself. Maybe I don't know what I am talking about but I am going to listen to what the MAC recommends and then decide how to spend the money along with the current board of directors who are all rosaceans. Obviously that is what Sam Huff does too along with his six board members who may or may not have rosacea since we know very little about the board of the NRS. Do you know who the board of directors are for the NRS? See if you can figure that one out. They decide what research is done and no doubt does whatever the MAC decides, but ultimately releases the funds to do the research. Are there any rosaceans on the board of directors for the NRS? Who can say?

As to Galderma influencing the NRS I have no facts and that is just an opinion. The NRS states on their website that they have received funding from Galderma.

If you are happy with the NRS, then by all means continue to be happy.

[Brady Barrows]

I think Brady and Rick both have good points...

But, they are coming out with some good relevant studies -- the more the better.

Geoffrey,
I have read in the past a post from you about how there may be a conflict of interest with the researchers and the NRS. I found your post here:

http://health.groups.yahoo.com/group/rosacea-support/message/65489

Here is my favorite post you made on this subject:

"...Dr. Dahl is on the Medical Advisory Committee/board of the NRS responsible for funding grants that we (the rosacea sufferers) have donated money to. No one on the Medical Advisory Committee or the board can ever receive or apply for a grant in any formal organization. This is never done. Ever. Yet, Dr. Dahl submitted a grant and received money for the study and also approved two grants by two other board members on that same committee. This is unheard of..." source >

http://health.groups.yahoo.com/group/rosacea-support/message/66997

You have helped to inspire me to form the RRDi so that we can have an honest MAC with no conflict of interest. I have a very strong conflict of interest policy that is public knowledge for anyone to read. The NRS and other non profits do not disclose any conflict of interest policy and from
what you wrote above, I think anyone can figure out why they don't post any conflict of interest policy.

Here is the current MAB for the NRS >

http://rosacea.org/grants/board.html

In 1999 Dr. Dahl received a grant of $21,299 from the NRS but it is possible that he was not serving on the MAB for the NRS at the time? I am not sure what grants you were talking about in message 66997. Dr. Dahl was on the NRS MAB in 1998 according to this url >

http://rosacea.org/rr/1998/summer/article_1.html

We can assume that probably he was on the MAB when he got the grant in 1999. This might be considered a conflict of interest.

The MAB of the NRS is so impressive and have all the credentials. I am not questioning the integrity of any of these men. I am sure they are performing a wonderful committee of helpful advice on researching rosacea. All I have ever said is that the NRS doesn't listen to what rosaceans may want to have researched and that the NRS MAB doesn't question why the NRS gives 60% of its funding to one private independent contractor, Glendale Communications Group, Inc., who is owned by Sam Huff, the director and chairman of the board for the NRS.

[Brady Barrows]

It doesn't take a Ph.D to understand that the NRS is not operating like it should and the doctors and researchers who accept funding from the NRS should be ashamed of themselves to accept funding from an organization run with this kind of a record. The research the NRS does is standard AMA practice for treating rosacea. There is nothing novel or exciting about the research done. You have no say whatsover in what research the NRS engages in, but I think Galderma has quite a say in what research is done.


I do not agree that those who accept NRS grants should be ashamed of themselves. They are doing us all a service by performing funded research in rosacea, as long as they have complete latitude to conduct independent research.

As an individual, if I contribute to any foundation like the American Cancer Society, obviously I have no say in the scope of research to be funded. That is why there are medical advisory boards. Personally, I see no issue whatsoever with Jonathan Wilkin, their MAB Director, driving their research agenda.

I accept your figures concerning the financials of NRS. But it worth noting that it is possible to contribute to the NRS and specify that 100% of your contribution go the Research Grants program.

Rick

Rick,
I personally do not question the integrity of the MAB for the NRS. I am sure they are doing the best they can and recommend what they think is best for rosacea research. What I think they should be ashamed of is how the NRS allows Sam Huff to receive 65% of the funds through his corporation, Glendale Communtications, and not have any questions about this. Ignorance is no excuse. These men are simply not checking out the organization they have joined. It is possible they really are ignorant of this but somehow I find this hard to accept. If you were on the NRS MAB and knew this what would you do?

I ask you this question:

If you knew the American Red Cross was giving 65% of its spending to one private corporation that is owned by the director of the American Red Cross would you still send in a donation to them specifying that the money is to be spent for Katrina victims only? There should be some law against this but apparently it is legal? That is what the NRS is doing. And I have been telling rosaceans about this for years and very few are bothered by this. And the NRS continues to be esteemed by the medical community.

As to those who ACCEPT research grants from the NRS, I am sure they are happy to receive research money from just about anyone. However, if you were a researcher and knew fully that the organization that is giving you the grant spends 65% of its money to one private contractor who also happens to be the owner of this corporation and the head of the non profit organization giving you this grant would you feel proud or ashamed? I doubt if the researchers accepting grant money from the NRS have even a clue what the NRS is doing. They just want research money and the NRS looks like a good deal on the outside but inside, when you actually read the Form 990 you can figure it out. Have you actually read the FORM 990 that is downloadable for free at www.guidestar.com ? To do this is a hassle but I have made it very easy at this url >

http://www.rosaceans.com/html/nrs.html

Scroll down and download the pdfs for the years I have available. I just received the hard copy of the 2004 Form 990 from the NRS by snail mail and quote the facts in the first post in this thread at the top. The pdf for 2004 should be available soon.

[Brady Barrows]

Please excuse me French, but, WANKERS!

Thanks for bringing this to our attention Brady. Out of curiosity, who are the main groups involved in donating to this organisation? I sincerely hope it isnt private sufferers, thinking their money is going to a good place (you dont want to get Big Bob Bear mad :twisted: :lol: ).


Hi Brady and Bob,

First, thanks Brady. As for Bob's question, I do remember that Dr. Wilkin addressed this at least once in an NRS review article and the title was something like Rosacea Sufferers Help Fund their own Research and it gave a staggering number that rosacea sufferers had donated. They are the biggest donators I believe. Thus Glendale communications salary is totally unacceptable. They now did put in a short little blurb that if you want this to go to research then state that on the check...... or, something like that. YIKES, I thought that would be the only reason because rosacea awareness is somewhat helpful, but they can do that themselves. Rosacea awareness means Galderma awareness with their topicals or 1-800 number. Not really that helpful IMHO.

Geoffrey,
Can you give a fact sheet on this? I seriously doubt that out of the half million dollars the NRS received last year that rosaceans made a significant contribution. With all the excitement of you being in the RRF and over 6000 members in David's group only $27K could be raised. If there were a significant percentage of donors who are rosaceans gave to the NRS they are absolutely computer illiterate and haven't been reading anything on my web site or Pascoe's. What do you think the odds are that computer illiterits would be donating to the NRS? I am confident that the majority of donors to the NRS are pharmaceutical companies. The NRS website lists the Candela Corporation, Galderma Laboratories, Intendis, and Stiefel Laboratories, Inc. on the index page. Each one of those corporations could easily donate $100K each. Berlix used to be listed but is no longer on the list. I doubt if 5% of the donations come from rosaceans. It is possible that Huff knows some wealthy substantial families who are not rosaceans or who have family members who have rosacea and donate to Huff simply because he gives them the non profit speach that this is a tax write off and he is helping people with rosacea. I think you are wrong on this Geoffrey. The NRS has only a few ignorant rosaceans donating and the percentage is very small.

What does IMHO mean?

[David Pascoe]

I seriously doubt that out of the half million dollars the NRS received last year that rosaceans made a significant contribution. With all the excitement of you being in the RRF and over 6000 members in David's group only $27K could be raised.

Brady, as I indicated to you 2 weeks ago, your number of $27K is wrong.

Everyone can see the total givings to the Rosacea Research Foundation on the donate page at http://rosacea-research.org/donate.htm

$18,121 is the total income.

[fanta]

I seriously doubt that out of the half million dollars the NRS received last year that rosaceans made a significant contribution. With all the excitement of you being in the RRF and over 6000 members in David's group only $27K could be raised.

Brady, as I indicated to you 2 weeks ago, your number of $27K is wrong.

Everyone can see the total givings to the Rosacea Research Foundation on the donate page at http://rosacea-research.org/donate.htm

$18,121 is the total income.
David, something wrong with the ticker cause it stays at $18121?? :|

[David Pascoe]

David, something wrong with the ticker cause it stays at $18121?? :|

Feel free to test it by donating ! - Watch the miracle of internet scripts update the amount on the fly.

[RedHotCanuck]

18k or 27k is not of interest here David. Brady is pointing out that most contributions come from corps, not regular rosaceans.

Btw, when will the RRF announce what the details are about the exciting grant. With people finding it VERY hard to get their money back from donating and not hearing about any grants, I can understand why the donations are small.

I seriously doubt that out of the half million dollars the NRS received last year that rosaceans made a significant contribution. With all the excitement of you being in the RRF and over 6000 members in David's group only $27K could be raised.

Brady, as I indicated to you 2 weeks ago, your number of $27K is wrong.

Everyone can see the total givings to the Rosacea Research Foundation on the donate page at http://rosacea-research.org/donate.htm

$18,121 is the total income.

[drnase]

18k or 27k is not of interest here David. Brady is pointing out that most contributions come from corps, not regular rosaceans.

Btw, when will the RRF announce what the details are about the exciting grant. With people finding it VERY hard to get their money back from donating and not hearing about any grants, I can understand why the donations are small.

I seriously doubt that out of the half million dollars the NRS received last year that rosaceans made a significant contribution. With all the excitement of you being in the RRF and over 6000 members in David's group only $27K could be raised.

Brady, as I indicated to you 2 weeks ago, your number of $27K is wrong.

Everyone can see the total givings to the Rosacea Research Foundation on the donate page at http://rosacea-research.org/donate.htm

$18,121 is the total income.


I am starting to believe that announcement was made to stop people from withdrawing their donations and from the official follow up letter from the government agency that would cut through all the excuses the RRF is giving and force then to refund with one request.

We would all like to at least know the name of the Company or Product within a few days as you were going to release this -- you cant hold us on a string forever.

[Brady Barrows]

I seriously doubt that out of the half million dollars the NRS received last year that rosaceans made a significant contribution. With all the excitement of you being in the RRF and over 6000 members in David's group only $27K could be raised.

Brady, as I indicated to you 2 weeks ago, your number of $27K is wrong.

Everyone can see the total givings to the Rosacea Research Foundation on the donate page at http://rosacea-research.org/donate.htm

$18,121 is the total income.

David,
Welcome to The Rosacea Forum. I remember seeing at one time when all the donations were coming in a flurry that the number went to $27K and I was extremely envious of how you did that so fast. I did notice the number dropped to $18K. Isn't that what happened?

[Brady Barrows]

18k or 27k is not of interest here David. Brady is pointing out that most contributions come from corps, not regular rosaceans.

Btw, when will the RRF announce what the details are about the exciting grant. With people finding it VERY hard to get their money back from donating and not hearing about any grants, I can understand why the donations are small.

I seriously doubt that out of the half million dollars the NRS received last year that rosaceans made a significant contribution. With all the excitement of you being in the RRF and over 6000 members in David's group only $27K could be raised.

Brady, as I indicated to you 2 weeks ago, your number of $27K is wrong.

Everyone can see the total givings to the Rosacea Research Foundation on the donate page at http://rosacea-research.org/donate.htm

$18,121 is the total income.

Mike,
There's a lot of quotes here. Think about this one. Let's say David has given a grant for $15K to some rosacea research and then the donors decide they want their money back because they don't like what is going on with the way the RRF is doing something and the RRF only has $3K left in the bank and have all the expenses of running the organization (whtever that costs). Let's say the donors want a sum of about $10K back. Do you really think that they can now return the money when it is spent? I don't get it. If rosaceans give a donation and then get upset because of the way the organization is run, the only option I can see is complain and not donate ever again. If they can legally get a return on their donation they will have to wait until they have the money to return which might be quite a while until they are solvent enough to be able to return the money (if they are required by law to do this). Does that mean the RRf or the RRDi has to keep the money in the bank in order to cover returns to anyone who complains about the way a non profit is run and wants their donation back? Why turn this into what the RRF is doing? You know the RRF has to be better run than the NRS which is what this thread is all about. David thinks it is important to know that the RRF only has $18K. I can understand this concern and apologize for this error. I thought I remembered seeing $27K because it was astounding to me that Geoffrey brought in that much money in so short a time which was obviously the factor. But $27K is about the cost of one research grant (usually $25K) that the NRS does. Hardly anyone complains about the NRS except me. Is anyone asking for a return on their donation to the NRS? No, and that is what I am pointing out: Rosaceans are generally not donating to the NRS and that is another proof that most of the money donated to the NRS is corporate donations.

[Brady Barrows]

18k or 27k is not of interest here David. Brady is pointing out that most contributions come from corps, not regular rosaceans.

Btw, when will the RRF announce what the details are about the exciting grant. With people finding it VERY hard to get their money back from donating and not hearing about any grants, I can understand why the donations are small.

I seriously doubt that out of the half million dollars the NRS received last year that rosaceans made a significant contribution. With all the excitement of you being in the RRF and over 6000 members in David's group only $27K could be raised.

Brady, as I indicated to you 2 weeks ago, your number of $27K is wrong.

Everyone can see the total givings to the Rosacea Research Foundation on the donate page at http://rosacea-research.org/donate.htm

$18,121 is the total income.


I am starting to believe that announcement was made to stop people from withdrawing their donations and from the official follow up letter from the government agency that would cut through all the excuses the RRF is giving and force then to refund with one request.

We would all like to at least know the name of the Company or Product within a few days as you were going to release this -- you cant hold us on a string forever.

Geoffrey,
A disclaimer is made on the RRF website that any donation may not be tax deductable because the RRF is awaiting 501 (c) (3) approval. I make this same statement on the RRDi donation page. If it is true that anyone can ask for a donation back then that means a non profit has to keep a significant amount of money in the bank just in case this happens. This is an eye opener to me and I hope it is not true and will check with my CPA about this. If any of the donors to the RRDi want their money back they will have to wait a long time since we have already spent the money. I imagine that David is in that same boat. I know how much a CPA costs and I got one cheap. I imagine David paid top dollar for his legal advice but he is not saying. You think David can get his CPA or lawyer he paid to apply for 501 (c) (3) approval to return the money? It is no picnic to run a non profit and I know how much trouble it is. If the board of the RRF has allocated the money to a research grant, how can he return the money until he receives more donations? They will have to wait in line and that may be a while. I am sure he is seeking legal advice on this and no doubt can make those donors who want their money back wait. Anyway, this thread is changing into a RRF debate and that is not what this thread is about. It is about the fact that rosaceans are not the primary donors to the NRS. I think I have enough clear logic that the NRS relies on corporate donations. If rosaceans were a significant contributor to the NRS why do we never hear of ANY complaints about the NRS (except from me and you) from rosaceans and why have we never heard of anyone wanting their donation to the NRS returned to them? It is obvious. Rosaceans are not donating to the NRS and the few that do are totally oblivious to how Sam Huff has used the NRS funds to go to his Glendale Communications Group, a private corporation owned by Sam Huff. This amounts to 60% of the total donations over the last seven years. $5,569,108 was donated. $3,368,592 was given to Glendale Communications. 60%. Why aren't rosaceans outraged about this? I have no idea. But I do know you are changing the subject to the RRF and I don't think this is a good idea. The RRF is way better than the NRS. And you and I will be diligent watchdogs on the RRF so that they dot every i and cross every t and read their Form 990 if they ever report one to the IRS. But let's keep this thread to the NRS and the way it is run, please.

[drnase]

Hi Brady,

The NRS started the Foundation in the Summer of 1998 and began accepting donations at the end of the summer. In the beginning of Spring 1999 (7 to 8 months later) rosacea sufferers donated an astonishing $250,000. Here is an excerpt from that article:


Grants Program Is Set to Support Rosacea Research

The National Rosacea Society has received wide support from rosacea sufferers for its newly established research grants program. Individual donations totaling more than $250,000 have been received to date, and are now earmarked for funding important scientific research into the potential causes and other key aspects of this poorly understood disorder.

"Those who are most affected by rosacea, patients themselves, have shown through their generosity a strong commitment to help advance scientific knowledge of this chronic disorder," said Dr. Jonathan Wilkin, director of Dermatologic and Dental Drug Products at the U.S. Food and Drug Administration and chairman of the medical advisory board for the Society's research grants program. "

[Brady Barrows]

Hi Brady,

The NRS started the Foundation in the Summer of 1998 and began accepting donations at the end of the summer. In the beginning of Spring 1999 (7 to 8 months later) rosacea sufferers donated an astonishing $250,000. Here is an excerpt from that article:


Grants Program Is Set to Support Rosacea Research

The National Rosacea Society has received wide support from rosacea sufferers for its newly established research grants program. Individual donations totaling more than $250,000 have been received to date, and are now earmarked for funding important scientific research into the potential causes and other key aspects of this poorly understood disorder.

"Those who are most affected by rosacea, patients themselves, have shown through their generosity a strong commitment to help advance scientific knowledge of this chronic disorder," said Dr. Jonathan Wilkin, director of Dermatologic and Dental Drug Products at the U.S. Food and Drug Administration and chairman of the medical advisory board for the Society's research grants program. "

Geoffrey,
Ok. You are right. I stand corrected. I began my own search in the Rosacea Review past issues. I found an interesting paragraph in the Fall 1999 issues which says,

"Since the National Rosacea Society initiated its new research grants program, nearly 20,000 Rosacea Review readers have contributed more than $260,000 to support research, and a $100,000 corporate donation was made by Galderma Laboratories..." source >

http://rosacea.org/rr/1999/fall/article_1.html

So a significant amount of readers of the Rosacea Review letter are supporting the NRS. That is astonishing, now isn't it? This same issue says the Dr. Dahl was awarded a grant of $21,299 to study 'whether the warmer skin of rosacea patients may play a role in causing the bumps and pimples of rosacea.' He was serving on the NRS Medical Advisory Board in 1998 according to the summer issue of 1998 >

http://rosacea.org/rr/1998/summer/article_1.html

I think it is very probable that he was serving on the NRS MAB when he awarded himself a grant in 1999. He is still serving on the current NRS MAB now.

According to the NRS website the past issues date back to 1996 while the guidestar.org only goes back to 1998 for Form 990. The NRS according to your first quote began the research program in the summer of 1998 and according to the fall '99 issue had collected in about a year $260K from individual rosaceans. They also report $100K from Galderma. However, the Form 990 shows that year to be a banner year for the NRS and reported a total revenue of $1,148,375.

So the Rosacea Review quote I found above (fall '99) doesn't jive completely with the form 990 for 1998 since there is $788K not accounted for. Who donated $788K ? The mysterious NRS.

I would venture to guess that the $788K in 1998 came from other pharmaceutical companies. If it did come from rosaceans I think they would have stated that in the fall '99 issue but they only said $260K came from Rosacea Review Readers.

So when it comes to the banner year of '98, the highest amount the NRS ever collected in a single year, 22% of the revenue that year came from 'Rosacea Review Readers.' Where did the rest come from? We know that $100K came from Galderma and that's all we know.

So based on that single year if every year for seven years 22% of the total donations came from rosaceans that is a huge amount of money.

The total revenue for seven years reported revenue for the NRS amounts to $5,569,108. 22% of this figure would be $1.2 million dollars! If this is the case, you are so right about this. I am dumbfounded that many rosaceans have helped the NRS.

It is amazing how carefully studying the Rosacea Review issues and comparing this with the Form 990 reported to the IRS can reveal a lot of mysterious questions about the NRS.

Even though I have published on my web site for years how the NRS is spending 60% of its donations on one private independent contractor who happens to be the President/Director of the NRS no one has ever checked this out except Warren Stuart, the creator of this forum and webmaster for www.rosaceagroup.org. No one. No one checks the Form 990 which I have made available for download on my site. No one has confirmed my findings except Warren. I really don't understand why rosaceans don't check this out for themselves and blindly donate to the NRS, trusting that their donations are being spent on a worthy cause.

A good non profit will spend about 15% on administration and the rest should go to its mission. However, not all non profits do this and the NRS falls into the category of using 60% for administration even though it cleverly tries to hide Glendale Communications as an independent contractor to the NRS. However, this corporation is owned by Sam Huff. I would hope that other rosaceans would check all this out and confirm what I have been publishing about this for years.

[drnase]

Absolutely,

Mark Dahl was on the MAC when he funded his own grant. Totally unacceptable on all levels in any medical Foundation. Plus, he funded two other MAC board members. Sincerely, unbelievable.

The $100,000 grant donated by Galderma sounds good at first pass, but you never want the same pharmaceutical company funding its own non-profit organization. For example, the study on bacteria and mites can easily be referred back to supporting Metrogel down the line. I hope it does not happen, but it could.

Does anyone realize what the RRDI or RRF could have done with 5 million dollars -- at the very least they could have funded 200 grants at $20,000 a piece and keep their budget costs respectable and realistic. 200 freakin grants instead of 20. That's appalling. 1998 -- 8 years later with 200 grants, every single rosacea sufferer would have tremendous options for treatments and triggers and we would understand some of the key underlying factors. That is a fact. 200 grants vs. 20.

[Brady Barrows]

Absolutely,

Mark Dahl was on the MAC when he funded his own grant. Totally unacceptable on all levels in any medical Foundation. Plus, he funded two other MAC board members. Sincerely, unbelievable.

The $100,000 grant donated by Galderma sounds good at first pass, but you never want the same pharmaceutical company funding its own non-profit organization. For example, the study on bacteria and mites can easily be referred back to supporting Metrogel down the line. I hope it does not happen, but it could.

Does anyone realize what the RRDI or RRF could have done with 5 million dollars -- at the very least they could have funded 200 grants at $20,000 a piece and keep their budget costs respectable and realistic. 200 freakin grants instead of 20. That's appalling. 1998 -- 8 years later with 200 grants, every single rosacea sufferer would have tremendous options for treatments and triggers and we would understand some of the key underlying factors. That is a fact. 200 grants vs. 20.

I have been trying since June 2004 and the RRF began in the fall of that same year. Hopefully within the next five years rosaceans will have respected what the RRDi and the RRF have tried to accomplish and these two non profits can fund some novel research instead what has been happening. Hopefully rosaceans will check into what non profits should be doing instead of blindly trusting the status quo.

[drnase]

18k or 27k is not of interest here David. Brady is pointing out that most contributions come from corps, not regular rosaceans.

Btw, when will the RRF announce what the details are about the exciting grant. With people finding it VERY hard to get their money back from donating and not hearing about any grants, I can understand why the donations are small.

I seriously doubt that out of the half million dollars the NRS received last year that rosaceans made a significant contribution. With all the excitement of you being in the RRF and over 6000 members in David's group only $27K could be raised.

Brady, as I indicated to you 2 weeks ago, your number of $27K is wrong.

Everyone can see the total givings to the Rosacea Research Foundation on the donate page at http://rosacea-research.org/donate.htm

$18,121 is the total income.

Mike,
There's a lot of quotes here. Think about this one. Let's say David has given a grant for $15K to some rosacea research and then the donors decide they want their money back because they don't like what is going on with the way the RRF is doing something and the RRF only has $3K left in the bank and have all the expenses of running the organization (whtever that costs). Let's say the donors want a sum of about $10K back. Do you really think that they can now return the money when it is spent? I don't get it. If rosaceans give a donation and then get upset because of the way the organization is run, the only option I can see is complain and not donate ever again. If they can legally get a return on their donation they will have to wait until they have the money to return which might be quite a while until they are solvent enough to be able to return the money (if they are required by law to do this). Does that mean the RRf or the RRDi has to keep the money in the bank in order to cover returns to anyone who complains about the way a non profit is run and wants their donation back? Why turn this into what the RRF is doing? You know the RRF has to be better run than the NRS which is what this thread is all about. David thinks it is important to know that the RRF only has $18K. I can understand this concern and apologize for this error. I thought I remembered seeing $27K because it was astounding to me that Geoffrey brought in that much money in so short a time which was obviously the factor. But $27K is about the cost of one research grant (usually $25K) that the NRS does. Hardly anyone complains about the NRS except me. Is anyone asking for a return on their donation to the NRS? No, and that is what I am pointing out: Rosaceans are generally not donating to the NRS and that is another proof that most of the money donated to the NRS is corporate donations.

EDITED OUT BY THE MODERATOR - BRADY BARROWS

THIS TOPIC IS ABOUT THE NRS

[Rick]

I ask you this question:

If you knew the American Red Cross was giving 65% of its spending to one private corporation that is owned by the director of the American Red Cross would you still send in a donation to them specifying that the money is to be spent for Katrina victims only? There should be some law against this but apparently it is legal? That is what the NRS is doing. And I have been telling rosaceans about this for years and very few are bothered by this. And the NRS continues to be esteemed by the medical community.


Brady,

Sorry -- missed this question.

The answer is YES. To continue the analogy, say I lived in New Orleans (i.e. I have rosacea in the current context), and say the only way I can get save a family member is via the Red Cross (or fund research is via NRS), then of course I would. Because, while I object to the misconduct in the funding agency, they still are a viable source of funds to save Katrina victims (i.e. rosaceans).

It is very important to differentiate the behavior of the funding agency from the benefits they can bring, albeit perhaps reduced by the overhead inherent in their administrative structure. As I said in the post you deleted, the integrity and technical credentials of the NRS MAB are beyond question.

From what I can tell, you are absolutely correct about the inappropriate relationship between Sam Huff (and Glendale Communications) and the NRS.

But why would I want to help disable the most significant funding stream for rosacea research?

Rick

[Rick]

Rick, what knowledge did all these rosacea experts provide you with? have you something to share with us?


In general, I do not like to post private emails, but I suspect Dr. Odom would not object since these are now fairly widely held observations. He was the first one to suggest to me the use of low-dose accutane in a 'pulsed' dosage. He is a very good guy, and I am really indebted to him for taking the time to communicate with a stranger.

I asked Dahl some specifics about his multi-center topical metronidazole study that Nase often cites with total disdain. I will withhold Dr Dahl's response here for this reason.

I asked Detmar about NRS funding priorities and he communicated his views on some of the broader issues. He strongly backs the NRS's selection of grants to fund.

Wilkin kindly provided a reprint I requested. The only one who really blew me off was Lynn Drake, whose expertise lies outside rosacea.

In general, I have found that these people take an interest in well-formulated technical issues.

The most useful exchanges I have had have been with Ethan Lerner from Harvard Med, who did the NO study for NRS, but is not on the NRS MAB. His study did not yield a positive conclusion, and he shared with me some of the complications encountered. Again, a very capable guy, and I was flattered that he would communicate at that level of detail.

Rick


From Richard Odom (#1):
_______________________________
I have never published my results of low-dose accutane in
the treatment of rosacea. At UCSF, I was referred many recalcitrant
rosacea patients who had been treated with topical and systemic
antibiotics, topical and systemic metronidazole, topical azelaic acid and
numerous other topical agents. Several years ago I started utilizing
low-dose accutane 20 mg 1-3 times weekly with gradual titration to an
effective maintenance dosage and my patients experienced very gratifying
results after 1-3 months. It is such a small dose and patients experience
minimal to no side effects and I have not had any increase in lipids. Most
of the women are out of the child-bearing range so the issue of
teratogenicity is negated. This dosage can be used for several months,
even 1-2 years without approaching the equivalent of one acne treatment
program with accutane. Obviously, if remission occurs, the drug can be
discontinued and restarted for exacerbations subsequently. It is a
gratifying treatment program and probably as safe or safer than chronic
antibiotic usage. I believe it is outside FDA indication but moderate
literature on rosacea is available.

I believe that you can safely use LASER for facial telangiectases
following low-dose intermittent accutane therapy but your LASER surgeon
may be biased against it, so I would discuss openly with the surgeon.
_______________________________



From Richard Odom (#2)
_______________________________
I agree with you that increasing your dosage to 40mg daily may cause some
dryness of the skin and mucous membranes. I will tell you my personal
feelings about erythema and accutane. Active rosacea is accompanied by
erythema related to inflammatory mediators, etc. When the rosacea is well
controlled, the erythema subsides because the skin is no longer
inflammatory. I do not believe that accutane improves telangiectases nor
the flushing associated with rosacea. It clears inflammatory pustules,
papules, nodules, and cysts, shrinks the sebaceous glands and promotes
facial dryness, and improves inflammatory erythema. Flushing is difficult
to treat and the telangiectases and persistent erythema are improved with
LASER. I am aware that LASER surgeons are frequently unhappy if you have
been on moderate doses of Accutane but usually the intermittent, low-dose
pulse is OK.
_______________________________

[drnase]

I ask you this question:

If you knew the American Red Cross was giving 65% of its spending to one private corporation that is owned by the director of the American Red Cross would you still send in a donation to them specifying that the money is to be spent for Katrina victims only? There should be some law against this but apparently it is legal? That is what the NRS is doing. And I have been telling rosaceans about this for years and very few are bothered by this. And the NRS continues to be esteemed by the medical community.


Brady,

Sorry -- missed this question.

The answer is YES. To continue the analogy, say I lived in New Orleans (i.e. I have rosacea in the current context), and say the only way I can get save a family member is via the Red Cross (or fund research is via NRS), then of course I would. Because, while I object to the misconduct in the funding agency, they still are a viable source of funds to save Katrina victims (i.e. rosaceans).

It is very important to differentiate the behavior of the funding agency from the benefits they can bring, albeit perhaps reduced by the overhead inherent in their administrative structure. As I said in the post you deleted, the integrity and technical credentials of the NRS MAB are beyond question.

From what I can tell, you are absolutely correct about the inappropriate relationship between Sam Huff (and Glendale Communications) and the NRS.

But why would I want to help disable the most significant funding stream for rosacea research?

Rick



Rick,

"But why would I want to help disable the most significant funding stream for rosacea research?"

That is a very valid point.

[David Pascoe]

I remember seeing at one time when all the donations were coming in a flurry that the number went to $27K and I was extremely envious of how you did that so fast. I did notice the number dropped to $18K. Isn't that what happened?

This thread has moved on, but wanted to answer Brady ;

The RRF never got to $27K in donations, the amount on the donation page has been an up to date amount of how much has come in, since we started. The value of donations incoming has not gone down, $18K is our total.

[Brady Barrows]

I ask you this question:

If you knew the American Red Cross was giving 65% of its spending to one private corporation that is owned by the director of the American Red Cross would you still send in a donation to them specifying that the money is to be spent for Katrina victims only? There should be some law against this but apparently it is legal? That is what the NRS is doing. And I have been telling rosaceans about this for years and very few are bothered by this. And the NRS continues to be esteemed by the medical community.


Brady,

Sorry -- missed this question.

The answer is YES. To continue the analogy, say I lived in New Orleans (i.e. I have rosacea in the current context), and say the only way I can get save a family member is via the Red Cross (or fund research is via NRS), then of course I would. Because, while I object to the misconduct in the funding agency, they still are a viable source of funds to save Katrina victims (i.e. rosaceans).

It is very important to differentiate the behavior of the funding agency from the benefits they can bring, albeit perhaps reduced by the overhead inherent in their administrative structure. As I said in the post you deleted, the integrity and technical credentials of the NRS MAB are beyond question.

From what I can tell, you are absolutely correct about the inappropriate relationship between Sam Huff (and Glendale Communications) and the NRS.

But why would I want to help disable the most significant funding stream for rosacea research?

Rick

I understand your reasoning but are you assuming that the American Red Cross is the only non profit aiding Katrina victims? Could there be just as an effective non profit who does not use 60% of the funding on administration who could benefit Katrina victims just as well?

The NRS has done some rosacea research. I am not in any way disabling this non profit from engaging in rosacea research. I am making rosaceans aware of how this non profit spends its funding. The beauty of non profits in the USA is that anyone can ask for a copy of the form 990 and see how it reports its spending and how much it received. An educated knowledgeable person can then decide if the non profit is worthy of a donation. When non profits ask for a donation and a donor is ignorant of form 990 and doesn't care how a non profit operates and assumes that just because it is a legal non profit that it doesn't use its funds to enrich the administration that is naive.

I am glad you agree that the administation could do better with its spending. I am confident that the NRS will continue to do more rosacea research and do not want to disable it in any way. I just think that rosaceans can do it better than Sam Huff.

My other question is do you know who serves on the board of directors for the NRS?

[Brady Barrows]

I remember seeing at one time when all the donations were coming in a flurry that the number went to $27K and I was extremely envious of how you did that so fast. I did notice the number dropped to $18K. Isn't that what happened?

This thread has moved on, but wanted to answer Brady ;

The RRF never got to $27K in donations, the amount on the donation page has been an up to date amount of how much has come in, since we started. The value of donations incoming has not gone down, $18K is our total.

Sorry I misquoted the figure again. I thought it was that high at one time and now I stand corrected. I will not bring this up again.