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Thread: NRS Donations from the Public May Possibly Be 15.6% in 2012

  1. #31
    Senior Member nat007's Avatar
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    Read this thread, from 2008, on the same topic http://www.rosaceagroup.org/The_Rosa...for-2007/page2
    and Peter makes some interesting points:

    "Brady, you keep banging on about the NRS shamefully giving only around 10% to what they're supposed to be doing but you know perfectly well that the NRS wasn't established to fund research and it has always been their intention to spend most of the money on patient and doctor education, publications, "rosacea week", etc. A lot of rosacea sufferers have found them very helpful, as you sometimes admit.

    Sarah, as you say, people could instead use RF, etc., but not everyone likes or wants to participate in internet support boards.

    Warren has often criticised the NRS, however this is a quote he wrote in October 2005 when Brady and Nase were trashing the NRS and the RRF for the umpteenth time:

    "Remember that the NRS is a multipurpose organisation and funding medical research is only a small part of what it does, there is also education and other activities that it funds. The only way to criticise the allocated % of funding is to compare it to similar organisations."

    http://www.rosaceagroup.org/The_Rosa...?t=8351&page=5

    From NRS figures at the time: "Only 16 percent of our budget covers administration and fundraising, leaving the remaining 84 percent for program services including research grants, public awareness, public education and medical scientific education. Contributors may designate the use of their donations for specific programs, such as research grants, by noting so on their check."

    As GuyinLA, the CPA, wrote: "my conclusion is that overhead/fundraising is not unreasonable". "84% going for Program Services, 9% for Management and general, and 7% for Fundraising. This is a good result."

    Brady, your explanations of the NRS figures are totally distorted but convince many who don't really understand the maths involved, let alone the unfair way they are represented.

    You present the figures so it will look like the money received by Glendale and the other firm is all pocketed by them. It is a total lie because that money passes through the firms to pay for advertising, publications, phone lines and much else besides, and only part of it is kept by the firms in the form of charges for carrying out those services. Any firm the NRS outsourced those tasks to would also charge on the same basis for running all of those programs.

    You also work hard at making it look as if Huff and co take all of their salaries straight out of the NRS's money. It's not true because as you admit elsewhere, you know that the firm has many other clients and the salary Huff receives from Glendale must be drawn in part from the profits drawn from all of their endeavours performed on behalf of all of their clients, exactly as other businesses are run.

    [...]
    Realistically, how likely is it that the RRDi will EVER fund even a single research study? In four years, they have funded absolutely nothing.

    The RRF was only in existence for a few months, yet still managed to put more than $16,000 into a useful study by Drs Tristani-Firouzi & Samolitis establishing that rosacea skin has increased levels of VEGF and cathelicidins, both of which can be reduced by PDL (pulsed dye laser) and IPL (intense pulsed light) treatments, meaning that those treatments do not only affect blood vessels as had generally been claimed. (It was co-funded by the NRS.)

    http://www.rosacea.org/rr/2007/spring/article_2.php

    The NRS has funded many excellent studies, including Dr Gallo's cathelicidin research the media made a terrific fuss over but which Brady ridiculed as boring because Gallo wasn't jumping to new subjects every year and was doing "the same research over and over" which Brady said was just boring. Going deeper into the subject is how real breakthroughs are usually discovered. I must admit I haven't always been convinced by the value of every study that has been funded by the NRS but everybody has different opinions on the best avenues to be investigated and at least I admit that I am no expert on this.

    http://www.rosaceagroup.org/The_Rosa...ad.php?t=12647

    Brady, you always put a lot of time into implying that the NRS is corrupt and dishonest and encourage other people to endorse that view, but you are always careful never to state it outright yourself so you can't be sued. In March 2007 at the RSG you posted:

    "I never mentioned the word corrupt. I am sure what the NRS is doing is legal without a doubt." & "I haven't said a harsh word about the NRS ever."

    [etc].


    Just wondering if the NRS is indeed spending a good % of the money that goes to those 2 companies indeed on "program services including research grants, public awareness, public education and medical scientific education." And if Peter might be onto something when he says "that money passes through the firms to pay for advertising, publications, phone lines and much else besides, and only part of it is kept by the firms in the form of charges for carrying out those services. Any firm the NRS outsourced those tasks to would also charge on the same basis for running all of those programs." GuyinLa said: "84% going for Program Services, 9% for Management and general, and 7% for Fundraising. This is a good result." Maybe by now this conclusion from GuyinLa (same thread/link) is not accurate anymore, but could it be that a chunk of what goes to these 2 companies is still spent on rosacea work? Like education and stuff?

    Whether or not such a division (16% research/ 84 or less% for program services) is a good one is another discussion, I think its not and like more here would rather see more research and less education programs, but I'm just not sure if there is more to this than the NRS only spending 10% on actual rosacea related work..

    I also emailed the NRS about this last year when we discussed this same topic and they said something along the same lines. I'm trying to find that email back but haven't yet.

  2. #32
    Senior Member Starlite's Avatar
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    Can I ask you a couple of questions Brady? It seems threads of the same theme run back yearly, and somethings more often, as far back as 2006 that I could find?

    Have you ever made an official complaint to any agency about your "concerns"? If yes, who and when? If not why not?

  3. #33
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by nat007 View Post
    Read this thread, from 2008, on the same topic http://www.rosaceagroup.org/The_Rosa...for-2007/page2
    and Peter makes some interesting points:

    "Brady, you keep banging on about the NRS shamefully giving only around 10% to what they're supposed to be doing but you know perfectly well that the NRS wasn't established to fund research and it has always been their intention to spend most of the money on patient and doctor education, publications, "rosacea week", etc. A lot of rosacea sufferers have found them very helpful, as you sometimes admit.

    Sarah, as you say, people could instead use RF, etc., but not everyone likes or wants to participate in internet support boards.

    Warren has often criticised the NRS, however this is a quote he wrote in October 2005 when Brady and Nase were trashing the NRS and the RRF for the umpteenth time:

    "Remember that the NRS is a multipurpose organisation and funding medical research is only a small part of what it does, there is also education and other activities that it funds. The only way to criticise the allocated % of funding is to compare it to similar organisations."

    http://www.rosaceagroup.org/The_Rosa...?t=8351&page=5

    From NRS figures at the time: "Only 16 percent of our budget covers administration and fundraising, leaving the remaining 84 percent for program services including research grants, public awareness, public education and medical scientific education. Contributors may designate the use of their donations for specific programs, such as research grants, by noting so on their check."

    As GuyinLA, the CPA, wrote: "my conclusion is that overhead/fundraising is not unreasonable". "84% going for Program Services, 9% for Management and general, and 7% for Fundraising. This is a good result."

    Brady, your explanations of the NRS figures are totally distorted but convince many who don't really understand the maths involved, let alone the unfair way they are represented.

    You present the figures so it will look like the money received by Glendale and the other firm is all pocketed by them. It is a total lie because that money passes through the firms to pay for advertising, publications, phone lines and much else besides, and only part of it is kept by the firms in the form of charges for carrying out those services. Any firm the NRS outsourced those tasks to would also charge on the same basis for running all of those programs.

    You also work hard at making it look as if Huff and co take all of their salaries straight out of the NRS's money. It's not true because as you admit elsewhere, you know that the firm has many other clients and the salary Huff receives from Glendale must be drawn in part from the profits drawn from all of their endeavours performed on behalf of all of their clients, exactly as other businesses are run.

    [...]
    Realistically, how likely is it that the RRDi will EVER fund even a single research study? In four years, they have funded absolutely nothing.

    The RRF was only in existence for a few months, yet still managed to put more than $16,000 into a useful study by Drs Tristani-Firouzi & Samolitis establishing that rosacea skin has increased levels of VEGF and cathelicidins, both of which can be reduced by PDL (pulsed dye laser) and IPL (intense pulsed light) treatments, meaning that those treatments do not only affect blood vessels as had generally been claimed. (It was co-funded by the NRS.)

    http://www.rosacea.org/rr/2007/spring/article_2.php

    The NRS has funded many excellent studies, including Dr Gallo's cathelicidin research the media made a terrific fuss over but which Brady ridiculed as boring because Gallo wasn't jumping to new subjects every year and was doing "the same research over and over" which Brady said was just boring. Going deeper into the subject is how real breakthroughs are usually discovered. I must admit I haven't always been convinced by the value of every study that has been funded by the NRS but everybody has different opinions on the best avenues to be investigated and at least I admit that I am no expert on this.

    http://www.rosaceagroup.org/The_Rosa...ad.php?t=12647

    Brady, you always put a lot of time into implying that the NRS is corrupt and dishonest and encourage other people to endorse that view, but you are always careful never to state it outright yourself so you can't be sued. In March 2007 at the RSG you posted:

    "I never mentioned the word corrupt. I am sure what the NRS is doing is legal without a doubt." & "I haven't said a harsh word about the NRS ever."

    [etc].


    Just wondering if the NRS is indeed spending a good % of the money that goes to those 2 companies indeed on "program services including research grants, public awareness, public education and medical scientific education." And if Peter might be onto something when he says "that money passes through the firms to pay for advertising, publications, phone lines and much else besides, and only part of it is kept by the firms in the form of charges for carrying out those services. Any firm the NRS outsourced those tasks to would also charge on the same basis for running all of those programs." GuyinLa said: "84% going for Program Services, 9% for Management and general, and 7% for Fundraising. This is a good result." Maybe by now this conclusion from GuyinLa (same thread/link) is not accurate anymore, but could it be that a chunk of what goes to these 2 companies is still spent on rosacea work? Like education and stuff?

    Whether or not such a division (16% research/ 84 or less% for program services) is a good one is another discussion, I think its not and like more here would rather see more research and less education programs, but I'm just not sure if there is more to this than the NRS only spending 10% on actual rosacea related work..

    I also emailed the NRS about this last year when we discussed this same topic and they said something along the same lines. I'm trying to find that email back but haven't yet.
    Nat007,

    What the NRS says on its web site is quite different from what is reported on Form 990. The current stat on the web site says, "86% for program services and 14% on administration and fundraising."
    http://www.rosacea.org/about/financial.php

    What GuyinLA is quoting is the same in 2008.

    Have you read the Form 990 for 2012? Have you found how much the NRS gave to Glendale and Park on Form 990? Have you found how much was given to rosacea research grants? The Form 990 is the legal report given to the IRS. What is reported on the NRS Financial page with the pretty pie chart is not what is reflected on the Form 990.

    The NRS' Mission is stated on the home page of the site:

    "The National Rosacea Society is a 501(c)(3) nonprofit organization whose mission is to improve the lives of people with rosacea by raising awareness, providing public health information and supporting medical research on this widespread but little-known disorder. The information the Society provides should not be considered medical advice, nor is it intended to replace consultation with a qualified physician. The Society does not evaluate, endorse or recommend any particular medications, products, equipment or treatments. Rosacea may vary substantially from one patient to another, and treatment must be tailored by a physician for each individual case."

    Yes, the NRS says it 'raises awareness and provides public health information' but it also 'supports medical research.' It does indeed, which is about 10% that is spent on medical research each year.

    The NRS shows on the Financial page that $111,195 was spent on research grants. Form 990 shows only $80,000 was spent (see page 35, Schedule I, Form 990). Form 990 shows that the NRS spent $388,954 to Glendale and Park. The Financial page doesn't mention this. Do the math, what percentage did the NRS spend on Glendale and Park? 61% of the total donations went to private contractors owned by the director of the NRS who sits on the NRS board. The Financial page on the NRS does not disclose this but the Form 990 does.

    What I am reporting is the facts from Form 990. Stick to Form 990, not what the NRS says on its financial page which cannot be verified. Form 990 can be verified because it is the report the NRS sends to the IRS.
    Last edited by Brady Barrows; 22nd December 2013 at 05:44 PM.
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  4. #34
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by Starlite View Post
    Can I ask you a couple of questions Brady? It seems threads of the same theme run back yearly, and somethings more often, as far back as 2006 that I could find?

    Have you ever made an official complaint to any agency about your "concerns"? If yes, who and when? If not why not?
    You have done your homework. Did you also notice the flack I got for reporting this? Because I get so much flack for this and criticism, I make a point to just stick to the facts reported on the Form 990 that the NRS reports to the IRS.

    Yes, indeed, I wrote a letter to the IRS in 2005 which you can read here. The IRS sent me a letter back thanking me. Then in the Form 990 for 2005 something changed on the Form 990 which never appeared from 1998 through 2004.

    The Form 990 for 2005 a new item has been reported which was never done in any of the previous reports to the IRS. In Part V-A - Line 75C, Statement 4, it says, and I quote: "Three of the seven directors of the National Rsacea Society (NRS), Samuel B. Huff, Datha J. Olney and Mary F. Erhard, are employed by Glendale Communications Grup (Glendale). Glendale provides the personnel and infrastructure, and carries certain outside expenses, needed to support and implement the program services and administration of the NRS, and also provides services to other clients unrelated to the NRS. The postiions of these NRS directors with Glendale and their total salaries from Glendale in 2005 are as follows:

    Because of their relationship, NRS directors associated with Glendale abstain from all board of director votes affecting Glendale, and only the NRS directors not associated with Glendale (The "Independent NRS Directors") review and approve activities and budgets affecting Glendale. Each year, the Independent NRS Directors review the continuation of the NRS's relationship with Glendale, and must approve retention of Glendale by the NRS annually. In additin, at least one of the Independent NRS Directors reviews monthly invoices from Glendale to the NRS. Glendale's fees to the NRS are determined on the same basis as for other Glendale Clients, and the Independent NRS Directors are provided with competitive cost estimates for specific projects undertaken by Glendale on behalf of the NRS."

    I don't know if my letter had anything to do with the above change in 2005 that did not appear from 1998 thru 2004 or not. But each year the Form 990 makes a similar statement. You can read what it say in 2012 if you simply open up the Form 990 for 2012 and take ten minutes reading it and looking for the statement yourself.

    I decided to write another letter this year and just sent it out yesterday asking the IRS to verify whether the 30% public support the NRS reports is donated can be verified since the NRS acknowledges the rest comes from 'industry donations.' It might be possible that the NRS received $226K from individual donations (public support) but I have my doubts.
    Last edited by Brady Barrows; 22nd December 2013 at 05:59 PM.
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  5. #35
    Senior Member nat007's Avatar
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    Brady, you bring this topic up and I feel people here have been trying for some time now to get a layman's answer on what exactly is happening with that 61% of donations that went to private contractors.
    It seems you are really interested in this topic and the 990 form, and its interesting, but I think you come a lot further with this topic and thread if you don't divert everyone to this form and require them to read it all up. Most have either no time or no deep rooted interest in that and the question is simply, can you explain in simple terms to people here what you say is exactly going on there. All I can make up from your posts is that the info on their website isnt corresponding with the detailed 990 form info (where you clearly have to make an effort for to obtain). And that only 10% or so goes to the actual research. But people like to know (as I interpretate it at least) what they then do with the 61 or so % that goes to these contractors in your opinion.

    And my post was about asking if Peter can have been right there in 2008 and its not a case of pocketing the remaining 90% of donations through those 2 contractor companies, but if they might use that perhaps for their other stated causes and goals (the education etc etc).

    It would be really nice if you could just answer that in simple words (not all the links and 'read it up yourself' etc).

  6. #36
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by nat007 View Post
    Brady, you bring this topic up and I feel people here have been trying for some time now to get a layman's answer on what exactly is happening with that 61% of donations that went to private contractors.
    It seems you are really interested in this topic and the 990 form, and its interesting, but I think you come a lot further with this topic and thread if you don't divert everyone to this form and require them to read it all up. Most have either no time or no deep rooted interest in that and the question is simply, can you explain in simple terms to people here what you say is exactly going on there. All I can make up from your posts is that the info on their website isnt corresponding with the detailed 990 form info (where you clearly have to make an effort for to obtain). And that only 10% or so goes to the actual research. But people like to know (as I interpretate it at least) what they then do with the 61 or so % that goes to these contractors in your opinion.

    And my post was about asking if Peter can have been right there in 2008 and its not a case of pocketing the remaining 90% of donations through those 2 contractor companies, but if they might use that perhaps for their other stated causes and goals (the education etc etc).

    It would be really nice if you could just answer that in simple words (not all the links and 'read it up yourself' etc).
    nat007,
    Whenever I give my opinion, if you carefully read what flak and criticism I received for posting this in the past, I got into trouble. As I mentioned before, I stick to the facts contained in the Form 990 for the figures, not what is no the NRS financial page. All I can say is the NRS reports that they spend about 60% of the donations on the two private contractors which are owned by Sam Huff for "the personnel and infrastructure, and carries certain outside expenses, needed to support and implement the program services and administration of the NRS" in the amount of $388.954. These are the facts. I won't go beyond the facts and speculate. I agree, most rosacea sufferers will not take even five minutes to read the Form 990 the NRS reports to the IRS. Most simply don't care how the NRS spends its millions of dollars of tax deductible donations. And if it is true that the NRS received $226K in 2012 from public support, the NRS will probably continue getting similar public support from rosacea sufferers in 2013 and beyond.

    I never said the NRS is 'pocketing the remaining 90% of the donations."
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  7. #37
    Senior Member nat007's Avatar
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    Quote Originally Posted by Brady Barrows View Post
    nat007,
    Whenever I give my opinion, if you carefully read what flak and criticism I received for posting this in the past, I got into trouble. As I mentioned before, I stick to the facts contained in the Form 990 for the figures, not what is no the NRS financial page. All I can say is the NRS reports that they spend about 60% of the donations on the two private contractors which are owned by Sam Huff for "the personnel and infrastructure, and carries certain outside expenses, needed to support and implement the program services and administration of the NRS" in the amount of $388.954. These are the facts. I won't go beyond the facts and speculate. I agree, most rosacea sufferers will not take even five minutes to read the Form 990 the NRS reports to the IRS. Most simply don't care how the NRS spends its millions of dollars of tax deductible donations. And if it is true that the NRS received $226K in 2012 from public support, the NRS will probably continue getting similar public support from rosacea sufferers in 2013 and beyond.

    I never said the NRS is 'pocketing the remaining 90% of the donations."
    Even when reading the form 990 and seeing the discrepancy between that and the NRS website and financial page, to me its still half a case when there is no information on what the NRS does exactly with that 60% of donations that goes to private contractors. You won't say it here for reasons you made clear, the NRS might not say it or at least they didn't in detail when I emailed them about it some time ago, when this same topic was discussed. So why would people jump to conclusions when that info is lacking? Peter seemed to imply that they might use that 60% (he talked about 80-something %) for their educational goals and I just don't really see a reason for outrage as long as it is not clear what they do with that majority of donation money. Inconsistancies aside, all I would want to know is if they pocket that donation money for themselves or use it for rosacea related goals.

  8. #38
    Senior Member Starlite's Avatar
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    And what do you hope to achieve by doing this on this forum for the last eight years?

  9. #39
    Senior Member Nadine's Avatar
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    Quote Originally Posted by nat007 View Post
    Even when reading the form 990 and seeing the discrepancy between that and the NRS website and financial page, to me its still half a case when there is no information on what the NRS does exactly with that 60% of donations that goes to private contractors. You won't say it here for reasons you made clear, the NRS might not say it or at least they didn't in detail when I emailed them about it some time ago, when this same topic was discussed. So why would people jump to conclusions when that info is lacking? Peter seemed to imply that they might use that 60% (he talked about 80-something %) for their educational goals and I just don't really see a reason for outrage as long as it is not clear what they do with that majority of donation money. Inconsistancies aside, all I would want to know is if they pocket that donation money for themselves or use it for rosacea related goals.
    I'd be shocked if they just outright pocketed it. But they do allocate it to contracts with their own PR firms, which probably is not technically illegal because it seems they follow appropriate governance procedures.

    And I would draw a distinction between noting the lack of information and the potential conflict of interest, on the one hand, and jumping to conclusions/outrage, on the other. And as far as I can tell, the rosacea related goals the industry donations have been funding have been primarily education campaigns that support the prescription of pharmaceuticals, along with trigger avoidance. For people interested in supporting the current paradigm of prescription-based rosacea management - not prevention or even cure - donating to NRS makes sense.

  10. #40
    Senior Member nat007's Avatar
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    Quote Originally Posted by Nadine View Post
    I'd be shocked if they just outright pocketed it. But they do allocate it to contracts with their own PR firms, which probably is not technically illegal because it seems they follow appropriate governance procedures.

    And I would draw a distinction between noting the lack of information and the potential conflict of interest, on the one hand, and jumping to conclusions/outrage, on the other. And as far as I can tell, the rosacea related goals the industry donations have been funding have been primarily education campaigns that support the prescription of pharmaceuticals, along with trigger avoidance. For people interested in supporting the current paradigm of prescription-based rosacea management - not prevention or even cure - donating to NRS makes sense.
    Yeah I definitely also rather would have seen that majority of funding going to rosacea research, not to educational campaigns. And yeah, if pharmaceutical companies are heavily funding the NRS, then it might not be as surprising perhaps that they steer towards education about prescription medicine; that would mean some well spent bucks for them if it leads to increased med. sales. I just still don't fully understand the purpose of these annual updates on 990 forms. If it leads to revelations of malpractice regarding donation money, or swindling of it then that's big and its good that its out there. But right now they might just use the money for their set goals through those 2 companies. Or they might not, and the link with the NRS ownership of/alliances with those PR companies might turn out dodgy after all. But we don't know that, if I get all this right?

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