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

  1. #21
    Senior Member Nadine's Avatar
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    Every time I see a phrase like "Corporate donations do not influence content," my eyes involuntarily roll.

    So....the organization that has funded the most rosacea research is funded mostly by pharma, and channels most of its financial resources into PR done by a firm whose other clients (never mind the overlapping director-/ownerships) are familiar names in healthcare/pharma and other industry (including a major processed food conglomerate).

    You don't have to be a conspiracy theorist to be wary of the research results NRS is getting. Just follow the money.
    Last edited by Nadine; 21st December 2013 at 02:31 AM.

  2. #22
    Senior Member Starlite's Avatar
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    Quote Originally Posted by Nadine View Post
    Every time I see a phrase like "Corporate donations do not influence content," my eyes involuntarily roll.

    So....the organization that has funded the most rosacea research is funded mostly by pharma, and channels most of its financial resources into PR done by a firm whose other clients (never mind the overlapping director-/ownerships) are familiar names in healthcare/pharma and other industry (including a major processed food conglomerate).

    You don't have to be a conspiracy theorist to be wary of the research results NRS is getting. Just follow the money.
    That's about right, Nadine.

    Thank you for the link, Brady. If I had just clicked on their main page those questions were clearly answered via links on any page of their site. Sorry about that.

    Yes, I do see your point in the questionable ethics of their top heavy spending. It's scandalous really. Unfortunately the same is true of the American Cancer Society, PETA, and many well known names of "non-profit" Orgs. I think a Non-corrupt org/company/agency is rare these days. Sadly. Bitter and jaded, moi? Noooo

  3. #23
    Senior Member Brady Barrows's Avatar
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    Default Comparing non profits

    Quite right Starlite. I did a comparison for a few hours on non profits and did find that the Dana-Farber Cancer Institute, as well as the Breast Cancer Research Foundation spend substantial sums of money and very high percentages of their donations on what they say they do. I carefully read each Form 990 and compared that with, as you say, the American Cancer Society (Group), which received in donations nearly a billion dollars and only spent 7.9 million dollars on cancer research (that means for every dollar donated to ASC Group less than a penny is spent on cancer research). Here is my report:

    http://members.irosacea.org/topic/13...with-research/

    When anyone calls me on the phone for a donation, I ask them to mail me a copy of their Form 990. They ask what is that? I ask, are you a non profit asking for a donation? They reply 'yes.' Call me back when you know what a Form 990 is. They never call me back. Most people don't have a clue what a Form 990 is. While Form 990 doesn't tell the whole story on a non profit, if reveals enough to make an intelligent decision as to whether to donate or not.
    Last edited by Brady Barrows; 21st December 2013 at 07:29 AM.
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  4. #24
    Senior Member Starlite's Avatar
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    Quote Originally Posted by Brady Barrows View Post
    Quite right Starlite. I did a comparison for a few hours on non profits and did find that the Dana-Farber Cancer Institute, as well as the Breast Cancer Research Foundation spend substantial sums of money and very high percentages of their donations on what they say they do. I carefully read each Form 990 and compared that with, as you say, the American Cancer Society (Group), which received in donations nearly a billion dollars and only spent 7.9 million dollars on cancer research (that means for every dollar donated to ASC Group less than a penny is spent on cancer research). Here is my report:

    http://members.irosacea.org/topic/13...with-research/

    When anyone calls me on the phone for a donation, I ask them to mail me a copy of their Form 990. They ask what is that? I ask, are you a non profit asking for a donation? They reply 'yes.' Call me back when you know what a Form 990 is. They never call me back. Most people don't have a clue what a Form 990 is. While Form 990 doesn't tell the whole story on a non profit, if reveals enough to make an intelligent decision as to whether to donate or not.
    I'll have to remember that line.

  5. #25
    Senior Member nat007's Avatar
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    This is so saddening. Especially how mainstream and accepted this practice seems. Just disgusting if you ask me, pure greed. It happens here in Holland as well, this summer there was a big issue with family of cancer survivors bicycling part of the Tour de France to gather money for a cancer organization/fund. Turned out the manager/director of the thing, who had stated to now get paid for his job, took a massive % and the majority of the money to pay himself a super royal salary (well into 600,000 a year if I remember correctly). People were outraged. For like one week. That was it. Same with 3rd world organizations here, who have managers who earn a million dollars a year easily. How can such greedy capitalism be matched with an organization that floats on volunteers, 3rd world country help or in our case research for an illness? Have people no shame anymore or is it the mentality of today that makes people feel so entitled and be so money driven? Rant over

    (ps Thanks for the complaint data Brady, I'll send one but doubt even a truck load of complaints will have any effect whatsoever on this practice. Like you say, they have gotten away with it for so long).

  6. #26
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by nat007 View Post
    This is so saddening. Especially how mainstream and accepted this practice seems. Just disgusting if you ask me, pure greed. It happens here in Holland as well, this summer there was a big issue with family of cancer survivors bicycling part of the Tour de France to gather money for a cancer organization/fund. Turned out the manager/director of the thing, who had stated to now get paid for his job, took a massive % and the majority of the money to pay himself a super royal salary (well into 600,000 a year if I remember correctly). People were outraged. For like one week. That was it. Same with 3rd world organizations here, who have managers who earn a million dollars a year easily. How can such greedy capitalism be matched with an organization that floats on volunteers, 3rd world country help or in our case research for an illness? Have people no shame anymore or is it the mentality of today that makes people feel so entitled and be so money driven? Rant over

    (ps Thanks for the complaint data Brady, I'll send one but doubt even a truck load of complaints will have any effect whatsoever on this practice. Like you say, they have gotten away with it for so long).
    The other sad thing is that I have been saying this each year since 2004 and received severe criticism for pointing this out here and other rosacea groups. I was banned from ever saying anything about the RRDi or the NRS from one rosacea online support group. To me, when the truth is available for anyone to read, legally provided in Form 990, and rosaceans continue to support the organization with donations is very sad. But each year I will continue to point what the NRS reports in its annual filing of the Form 990 for 2013 sometime toward the end of 2014. You might be surprised what your letter to the IRS might do. I wrote one a while back and things did indeed changed the following year on the Form 990. It stated that the two board members who sit on the board of the NRS abstained from voting on any matters regarding Glendale and Park. I really don't know if my letter had anything to do with that or not, but it adds to the weight that something just isn't quite right with this relationship since it is acknowledged each year since the change.
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  7. #27
    Senior Member Nadine's Avatar
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    Quote Originally Posted by Brady Barrows View Post
    The other sad thing is that I have been saying this each year since 2004 and received severe criticism for pointing this out here and other rosacea groups. I was banned from ever saying anything about the RRDi or the NRS from one rosacea online support group. To me, when the truth is available for anyone to read, legally provided in Form 990, and rosaceans continue to support the organization with donations is very sad. But each year I will continue to point what the NRS reports in its annual filing of the Form 990 for 2013 sometime toward the end of 2014. You might be surprised what your letter to the IRS might do. I wrote one a while back and things did indeed changed the following year on the Form 990. It stated that the two board members who sit on the board of the NRS abstained from voting on any matters regarding Glendale and Park. I really don't know if my letter had anything to do with that or not, but it adds to the weight that something just isn't quite right with this relationship since it is acknowledged each year since the change.
    What bugs me about this is that after dealing with this condition for 20 years, and being told over and over again, "Nobody knows what causes it, and there's no way to cure it, but here's a prescription for some pills and creams," I would expect there to have been SOME progress in getting a better understanding of it over that time period.

    I think this is symptomatic of a broader, systemic problem in our culture around disease and treatment. There's always money for development of new prescription treatments, but when it comes to looking at root causes (for everything from rosacea to breast cancer), progress is painfully slow and underfunded. Then when you look at the vested interests involved, it's not that hard to see why.

  8. #28
    Senior Member Starlite's Avatar
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    Non-profit Orgs. are over seen by the State Attorney General. Poking them with this information will get an investigation going. If that's what you want. What ever state they are based in.

  9. #29
    Senior Member Nadine's Avatar
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    Quote Originally Posted by Starlite View Post
    Non-profit Orgs. are over seen by the State Attorney General. Poking them with this information will get an investigation going. If that's what you want. What ever state they are based in.
    That's true, but the IRS controls their non-profit tax status.

  10. #30
    Senior Member Starlite's Avatar
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    Quote Originally Posted by Nadine View Post
    That's true, but the IRS controls their non-profit tax status.
    Yup.. LOL You could point both of those folks at them.. there may be certain laws the IRS doesn't worry about that the State Attorney General would get very cranky about.. like the conflict of interest. The IRS lets The American Cancer Society function with such pitiful practical financial contributions because they must be able to stay with in some bounds (read loop holes.) I have NO clue how they have gotten away with it all these years.

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