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  • NRS Form 990 Report for 2004

    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
    Brady Barrows
    Blog - Join the RRDi



  • #2
    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 ).

    Comment


    • #3
      Donations and non profits

      Originally posted by 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 ).
      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
      Brady Barrows
      Blog - Join the RRDi


      Comment


      • #4
        Originally posted by 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 ).

        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.

        Comment


        • #5
          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.

          Comment


          • #6
            RRDi is not in tears...

            Originally posted by 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.
            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.
            Brady Barrows
            Blog - Join the RRDi


            Comment


            • #7
              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.

              Comment


              • #8
                Re: RRDi is not in tears...

                Originally posted by 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".

                Comment


                • #9
                  Re: RRDi is not in tears...

                  Originally posted by 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

                  Comment


                  • #10
                    Re: RRDi is not in tears...

                    Originally posted by creole65
                    Originally posted by 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.
                    Your statement has as much status as me saying "I think Brady has no idea what he is talking about".
                    that's not funny!

                    Comment


                    • #11
                      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/

                      Comment


                      • #12
                        Re: RRDi is not in tears...

                        Originally posted by creole65
                        Originally posted by 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
                        Blog - Join the RRDi


                        Comment


                        • #13
                          NRS MAB

                          Originally posted by drnase
                          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.../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.../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
                          Blog - Join the RRDi


                          Comment


                          • #14
                            Re: RRDi is not in tears...

                            Originally posted by Rick
                            Originally posted by 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
                            Blog - Join the RRDi


                            Comment


                            • #15
                              Rosaceans donating to the NRS?

                              Originally posted by drnase
                              Originally posted by 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 ).

                              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?
                              Brady Barrows
                              Blog - Join the RRDi


                              Comment

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