Wednesday, June 22, 2011
by Mark Beckwith
For the second time in two weeks I found myself at the National Institutes of Health (NIH). Never in my wildest dreams would I have thought I would be saying that, yet now it seems so right. Sort of a combination of “citizen science” (I’ll address that some other time) and “Mr. Smith Goes to Washington.”
Today’s occasion was the 25th anniversary of the National Institute of Arthritis, Muskuloskeletal and Skin Diseases (NIAMS), one of 26 different institutes that make up the NIH. What a celebration it is, too. The brass at NIAMS chose “Improving Lives Through Discovery” as the title for the whole deal. It reminds me of those 16mm movies we used to watch in school. (Yes, I was the Projector Monitor and took my work very seriously.)
The second invitation I received to attend this, was sent via FedEx Overnight. It was at that point I figured I was being somewhat commanded to attend – probably because we were ultimately successful at getting a grant from the NIH for our Expert Meeting in Germany in May. I was going to attend anyway, but the FedEx was a nice touch (your tax dollars at work) and I immediately RSVP’d that I would attend.
It was a day of success stories where NIAMS had given grants to organizations which had then gone on to improve the lives of patients because of discoveries resulting from the grants. You can’t argue with success. They were some good stories! Inspiring!
At one point, Dr. Daniel Kastner, the Director of the National Human Genome Research Institute, was on a panel fielding questions from the audience. He’s an MD PhD so he does both research and seeing patients. I took the opportunity to ask him if, with the coming age of personalized medicine (i.e. genetic therapies), how our carefully-guarded patient association research dollars should be targeted – on genetics or on more conventional therapies. I knew this was a loaded question.
Kastner hedged immediately, but recommended helping the patients first (i.e. focus on conventional therapeutics). I thanked him and sat down.
The next thing I know, Dr. Stephen Katz, the head of NIAMS, is at the microphone challenging Kastner’s answer. It was quite something. Katz pointed out that even though we had just received a glowing presentation about success with Marfan Syndrome, we had certainly not eradicated the disease. He stressed the answer was most certainly going to lie in genomic analysis; yet of all the grant applications submitted for them to consider presently, not a single one had anything to do with Marfan Syndrome.
Later in the day, when I caught up with Dr. Katz, he asked if I’d heard his comments about Marfan Syndrome. He said the whole time he was talking about it, he was thinking about Mark Beckwith and Nevus Outreach.
Point taken. I believe this was a call to action for us to ramp up our relationship with NIAMS. No wonder, the FedEx Overnight. Dr. Katz is watching out for us.
I’ll have to think about all this means.