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Thread: Retinoid highly recommended by top-rated dermatologist on RRDi

  1. #11
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by laser_cat View Post
    I wonder if someone tried to replicate the research and could not get positive results (which tend not to be published).
    This is a subject I have a passion with, rosacea research. Basically there are four non profit organizations for rosacea that have anything to do with rosacea research. One other non profit, the AAD might spend a tiny bit on rosacea research but you would be hard pressed to get an actual amount of how much it spent money on rosacea research.

    Not considering the RRDi, of the three other rosacea non profit organizations for rosacea, one has taken the lead in sponsoring rosacea research, the NRS, which spends on average 10 cents for every dollar donated to this non profit on rosacea research, and is the leader among the three. The NRS spends the majority (60%) of its donations on private contractors owned by one of its board members. The other thirty percent is spent on running the non profit organization with employees, office expenses, etc. However, because it has done this for so long it has spent the most on rosacea research, even if only 10 percent of its donations actually is spent on rosacea research.

    The AARS spends about 8 cents on research for a few years, out of every dollar donated to this non profit (techically less than eight cents since some of the research went for acne, not rosacea). In 2018 the AARS spent nothing on research. We have no way of knowing if the ARSC spends any of the donated funds on rosacea research since Canada doesn't require disclosing what non profits spend donations on.

    The RRDi would love to spend the majority of its donations on rosacea research if there were any funds to do so, but alas, there are no donations coming in for rosacea research. Wouldn't it be a novel idea for rosacea sufferers to get together and sponsor their own rosacea research, i.e., replicating the retinaldehyde French study, or whatever the group wanted to research, instead of the status quo research being done. The vast majority of rosacea research is being sponsored by pharmaceutical companies who one rosacea expert commented, "perhaps not the most credible source of unbiased research." [1]

    The The National Institutes of Health (NIH) spends yearly over $31 billion and not one cent on rosacea research. [2] You can understand why the NIH ignores rosacea research when you put rosacea in perspective of other diseases. [3]

    In another related subject that that has an influence on rosacea research is the conflict of interest in dermatological textbooks. [4]

    So, in conclusion, what would it take to get about 10K rosacea sufferers to each donate one dollar and sponsor their own novel rosacea research like you have proposed? I have a glimmer of hope because over fifteen years ago David Pascoe and his Rosacea Research Foundation pulled rosacea sufferers together and unitedly sponsored rosacea research with $16K. It can be done. David Pascoe owns the Rosacea Forum, this one we are posting in.

    End notes

    [1] A Personal Critique on the State of Knowledge of Rosacea, Albert M. Kligman, M.D., Ph.D.

    [2] Rosacea Research in Perspective of Funding

    [3] Rosacea Research in Perspective of Idiopathic Diseases

    [4] Dermatological Textbooks Conflict of Interests
    Last edited by Brady Barrows; 2nd July 2020 at 01:52 AM.
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  2. #12
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    Quote Originally Posted by Brady Barrows View Post
    This is a subject I have a passion with, rosacea research. Basically there are four non profit organizations for rosacea that have anything to do with rosacea research. One other non profit, the AAD might spend a tiny bit on rosacea research but you would be hard pressed to get an actual amount of how much it spent money on rosacea research.

    Not considering the RRDi, of the three other rosacea non profit organizations for rosacea, one has taken the lead in sponsoring rosacea research, the NRS, which spends on average 10 cents for every dollar donated to this non profit on rosacea research, and is the leader among the three. The NRS spends the majority (60%) of its donations on private contractors owned by one of its board members. The other thirty percent is spent on running the non profit organization with employees, office expenses, etc. However, because it has done this for so long it has spent the most on rosacea research, even if only 10 percent of its donations actually is spent on rosacea research.

    The AARS spends about 8 cents on research for a few years, out of every dollar donated to this non profit (techically less than eight cents since some of the research went for acne, not rosacea). In 2018 the AARS spent nothing on research. We have no way of knowing if the ARSC spends any of the donated funds on rosacea research since Canada doesn't require disclosing what non profits spend donations on.

    The RRDi would love to spend the majority of its donations on rosacea research if there were any funds to do so, but alas, there are no donations coming in for rosacea research. Wouldn't it be a novel idea for rosacea sufferers to get together and sponsor their own rosacea research, i.e., replicating the retinaldehyde French study, or whatever the group wanted to research, instead of the status quo research being done. The vast majority of rosacea research is being sponsored by pharmaceutical companies who one rosacea expert commented, "perhaps not the most credible source of unbiased research." [1]

    The The National Institutes of Health (NIH) spends yearly over $31 billion and not one cent on rosacea research. [2] You can understand why the NIH ignores rosacea research when you put rosacea in perspective of other diseases. [3]

    In another related subject that that has an influence on rosacea research is the conflict of interest in dermatological textbooks. [4]

    So, in conclusion, what would it take to get about 10K rosacea sufferers to each donate one dollar and sponsor their own novel rosacea research like you have proposed? I have a glimmer of hope because over fifteen years ago David Pascoe and his Rosacea Research Foundation pulled rosacea sufferers together and unitedly sponsored rosacea research with $16K. It can be done. David Pascoe owns the Rosacea Forum, this one we are posting in.

    End notes

    [1] A Personal Critique on the State of Knowledge of Rosacea, Albert M. Kligman, M.D., Ph.D.

    [2] Rosacea Research in Perspective of Funding

    [3] Rosacea Research in Perspective of Idiopathic Diseases

    [4] Dermatological Textbooks Conflict of Interests
    How about a rosacea crowd funding page for the RRDI

  3. #13
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    Quote Originally Posted by Rubydo1 View Post
    How about a rosacea crowd funding page for the RRDI
    Thinks thats a great idea.

  4. #14
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by Rubydo1 View Post
    How about a rosacea crowd funding page for the RRDI
    Have no idea how to do that. Do you? Volunteering has benefits.
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  5. #15
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by Dan3dwards View Post
    Thinks thats a great idea.
    If you know anything about how to do this we can sure use volunteers.

    However, I did a cursory search and discovered you have to make a website and it costs several thousand dollars at this page, and the RRDi already has a website, we are legally setup to take donations which are tax deductable and we don't have that kind of money to do crowd funding. If someone wants to pay for all that and set it up I am willing to listen. Based upon the Wikipedia article on crowdfunding, which is a for profit venture, doesn't seem to fit what rosacea research is all about in this case, and should be a NON PROFIT venture.
    Last edited by Brady Barrows; 2nd July 2020 at 05:00 PM.
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  6. #16
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    Quote Originally Posted by Brady Barrows View Post
    If you know anything about how to do this we can sure use volunteers.

    However, I did a cursory search and discovered you have to make a website and it costs several thousand dollars at this page, and the RRDi already has a website, we are legally setup to take donations which are tax deductable and we don't have that kind of money to do crowd funding. If someone wants to pay for all that and set it up I am willing to listen. Based upon the Wikipedia article on crowdfunding, which is a for profit venture, doesn't seem to fit what rosacea research is all about in this case, and should be a NON PROFIT venture.
    I guess you would have to make a separate one for Rosacea research . Ive not done one myself. But my sisters friend lost her husband to covid19 and was left with two young kids. A crowd funding page was set up and 20,000 was raised in a few weeks .

  7. #17
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by Rubydo1 View Post
    I guess you would have to make a separate one for Rosacea research . Ive not done one myself. But my sisters friend lost her husband to covid19 and was left with two young kids. A crowd funding page was set up and 20,000 was raised in a few weeks .
    That is impressive.
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  8. #18
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    I think you should just be able to set up a GoFundMe page for free? I think they're pretty easy to set up. I'll have a look into it.

    EDIT: I should have added that yes, GoFundMe is a for-profit site. It charges a couple of % processing fee and a flat fee for every donation.
    Last edited by Dutch1; 3rd July 2020 at 02:49 AM.

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