MJF and Parkinson’s disease: if only rosacea had such a benefactor

Written by on December 9, 2008 in in the news, research foundation with 6 Comments

A really interesting piece in the New York Times about how Michael J Fox is the front man for a revolutionary foundation fighting Parkinson’s Disease. The Michael J. Fox Foundation for Parkinson’s Research has funded an amazing $125m in research.

From Taking Science Personally;

What makes the story of the Michael J. Fox Foundation different — nay, what makes it important — is that it doesn’t just dole out money to scientists and hope for the best. It has used its money to take control of Parkinson’s research like few other foundations have ever done. In the process of trying to solve the mysteries of Parkinson’s, it has upended the way scientific research is done, and the way academics interact with pharmaceutical and biotech companies, at least in its little corner of the world. It demands accountability and information sharing that is almost unheard of in the broad scientific community. And it has managed to become, in its short seven-year life, the most credible voice on Parkinson’s research in the world.

They all use their money, unabashedly, as weaponry, to finance targeted research, hold conferences where scientists must share information and underwrite clinical trials conducted by drug companies. They are hard not to admire.

Meanwhile, the Fox Foundation wanted a change: in how it financed research, and what kind of research it financed. Instead of simply doling out money for a certain period of time — and hoping for the best — it began to keep closer track of researchers, using its money to accelerate research that was going well, or shift direction if it wasn’t. It expected its researchers to report problems and progress. It established markers and other goals that researchers were expected to meet. It insisted that the money it gave went very specifically to research that was directly related to Parkinson’s — and it was unafraid to finance risky ideas. “We throw 100 ideas up against the wall,” Ms. Brooks said. “One of the most important things we do is de-risk ideas” — and in so doing make them more palatable for industry and other researchers to pursue.

A few years later, Ms. Brooks and Mr. Fox made another important shift. Instead of relying on the scientific advisory board to make “yea” or “nay” decisions on grants, it decided to hire its own Ph.D.’s. It now has six in-house scientists. The Ph.D.’s allow the foundation to move faster still, since it no longer has to wait for the scientific advisory board to meet to make decisions. But it has other benefits as well: the Fox scientists are young, early enough in their careers that they are not set in their ways. There are perfectly happy to ask different kinds of questions and do things in a different way. In effect, they have allowed the Michael J. Fox Foundation to not just pursue important research already being done, but also to set the agenda for research it thinks ought to be pursued. And that is what has happened.

I find this really interesting. It obviously helps to have a rich contributor like ex Intel boss Andy Grove, but nonetheless a fresh approach to keenly develop treatments is working for Parkinson’s Disease.

I’m also reminded of the efforts of Lance Armstrong who is returning to professional racing next season with the primary idea of advancing his cancer foundation.

These sorts of approaches certainly differ from what we see in rosacea, where rosacea sufferers are for eg. left waiting for a bigpharma company to push through a product like sansrosa.

I’m also impressed with the idea to employ your own Ph.Ds. After reading what I can of the last few year’s worth of rosacea research I do sometimes wonder just who exactly is undertaking truly forward thinking research.

Over to you:

What are your thoughts ? Do you think rosacea research needs an overhaul from the current thinking and way of doing things ? Are we missing a motivated celebrity sufferer to head up our cause ?

Read more about: in the news, research foundation

About the Author

About the Author: David Pascoe started the Rosacea Support Group in October 1998. .

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6 Reader Comments

  1. David,
    Good article. It would be good to actually read the Form 990 to see how this organization spends its funds and if the money is actually being spent as you say, which is very novel. I have always thought that a non profit rosacea research organization should spend most of its money on novel rosacea research rather than on administration or running the organization, but alas, most non profits spend the majority on such things and research is but a tiny portion of what is accomplished. Thanks for the article and pointing out the MJF Foundation which I will carefully follow how they spend their money.

  2. The Form 990 for 2007 shows that the MJFF spends $23.6 Million for research and received $38.4 Million in revenue. That means that for every dollar donated to the MJFF that 61 cents is spent on research. That is excellent and shouldn’t that be the way a non profit should be?

  3. David Pascoe says:

    To me it seems there is something more interesting here than just the dollar amounts.

    What they are doing is changing the way of thinking
    about research funding and taking control of the whole enterprise.

    Any percentage poorly spent is poorly spent.

  4. Kathy says:

    I thought the article was very informative. Maybe we do need a celebrity on our behalf. Hey, Bill Clinton has Rosacea. Not sure if he has done anything for the cause though.

    I recently came across a situation that I thought I should comment on. I recently wrote a letter to my insurance company wondering why they wouldn’t cover the cost of IPL Photo Facial Treatments. To my surprise, they wanted my Dermatologist to code the procedure as medically necessary in order for the treatments to be covered. Guess what? My Dermatologist refused to do this. One who has moderate Rosacea already knows that IPL treatments dramatically help combat the itching, redness, dryness and it also pushes the capillaries back into the skin where they are supposed to be. Another interesting fact that my Dermatologist told me was that now research has shown that continued use of antibiotics now produce brown pigmentation spots on the face. I was told that I should only take my antibiotic 4 times a week instead of 7 times a week. Hmmmm…… is this another indication that IPL treatments are the best choice for Rosacea patients? I am a firm believer that it is! If there is no cure for Rosacea, then I believe that the cost of IPL Photo Facials should not come out of the consumers pocket entirely. These treatments cost anywhere from $400.00 – $500.00 a session. Something needs to change. Starting at your local Dermatologists office.

    Hoping for a cure before I go broke and handing over my hard earned money to my local Dermatologist.

  5. Deardra MacDonald says:

    Please send me information on Rosacea and Parkinson’s.

  6. David Pascoe says:

    Hi Deardra,

    I’m not aware of any research that relates to the two diseases but I did find this – Skin function and skin disorders in Parkinson’s disease.

    all the best,

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