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Originally Posted by indigogo
I don't mean to sound like I'm trying to stifle dissent when I cheer-lead for MJFF. That should never happen to us; we should always be looking in unlit corners and questioning EVERYTHING - and I applaud slapdasch for that.
But I also cannot fail to try to let people know what a comprehensive job MJFF is doing for us, and that it makes me sleep soundly at night. Because I know they GET it - that they are living and breathing this stuff.
I've been on the MJFF Patient Council since its founding, about 4 years ago. It started at 8 members, and has now grown to about 25-30 people. We meet on the phone throughout the year, working on various independent and some group projects; sometimes I meet with staff members when they are in the Seattle area. Twice a year we have 2-day meetings in NYC.
The staff is incredibly talented and devoted; turnover is rare; bringing fresh minds in to steer new projects is common. There is no stagnation. CEO Todd Sherer told me that it is their job to be steps ahead of the current research; to never be playing catch up.
Over the years I've been introduced to Michael J Fox a few times at fundraisers or scientific meetings. Just quick exchanges of greetings. He had never been to one of our meetings until last October, when he surprisingly joined us during an afternoon session. What he said to us was even more surprising, at least for me. He told us to be "disruptive and annoying" as we pushed for a cure. And it took those words coming out of his mouth in a roomful of patients to finally make me understand that he is truly one of us - just way more famous and wealthy. He built an organization that anyone of us would have, given the same resources (his greatest, I believe, is access - to anyone). MJFF has disrupted the way medical research is done. And Michael expects nothing less from all of us. So we must keep questioning and pushing the envelope - especially to keep MJFF on their toes.
But we have to do it in an educated and knowledgeable way. MJFF is covering a lot of the bases; they should be pushed to explain gaps. But they also should be given credit for the work they are doing so well on our behalf. Again, we are lucky to have them on our side. He really is not too good to be true.
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You'll get no argument from me about the Michael J. Fox Foundation. I am aware of the scope and quality of the work they do and support their efforts wholeheartedly. Nonetheless, as you pointed out, their general excellence doesn't place them in a realm beyond crirticism. One issue touched on in my original post was the business of a new push by drug companies into research concerning PD and cognitive decline. This new venture is centered once more around the development of new pills to deal with the issue. The MJFF was cited as being an enthusiastic supporter of this new research, which I don't resally fault them for. Nonetheless, my argument in relation to PD research is that the playing field should be leveled a bit, with less emphasis on invasive treatments, like new pills and DBS, particularly as automatic first choices. The flip side here is a heightened sense of research interest in topics such as exercise, diet and sleep. Again, I don't say these alternatives to pushing pills aren't being addressed, but advocacy groups can do better at drawing the distinctions among these various research approaches.