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March 04, 2009


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This blog-hopping EDSer saw the phrase 'rich scientist' and couldn't resist. If one's life goal is to become rich, I recommend some other career path. Like being the CEO of some pharmaceutical company. While I haven't conducted a statistically sound survey, none of my soon-to-be-scientist peers are getting in it for the money. The general consensus seems to be that science is cool.

However, there are many reasons that science plods on slowly. One is that there are many problems to solve. Another is that for every cure there are thousands of non-cures or cures that only work in animal models (just ask any formerly diabetic mouse). Or look at polio. We've had the bloody vaccine for almost sixty years and still haven't eradicated it, though not through lack of effort or funds or scientific advances.

I can't speak for the moral responsibilities of charitable organizations or the decisions of those who distribute funds, but on behalf of the scientists: whatever it is, we're (probably) working on it.

Thank you for writing this and other thought-provoking posts.

Back to lurking.


The thing is, the problem with the MDA could be so easily fixed. All they'd have to do is stop being a parent group trying to fix their kids, and start being a self-advocacy group. The research could still be done, but the important issues that affect people who are alive right at this very moment would also be addressed in the here and now. There you've got people like Ben, who played by the rules, only to find out that the MDA not only doesn't speak for him, it doesn't want him to speak. Whatever other good they might do, they are paternalists in the Old South meaning of the term. And that ain't good, because you never know when you'll be sold down river.

One Sick Mother


Thanks for de-lurking, if only for a day.

You are right, of course. I think at one point I had a line in there about intellectual challenge (and the Nobel prize!) for the researchers, but it got killed (I totally overworked this piece, due to having a seizure halfway through writing it)


Please stop reading my mind! ;) The parent/self advocate thing is probably my next post.

Interesting Old South angle there, although it's not something I can ever speak to, being from Ireland and all...


I think yanub's got it--they need a several part mission, not just research, and to better balance between those elements.

For Charity Navigator, I wish there were a broader profile given of the work done since I think some smaller organizations do well at their mission despite higher expenses. But it does give a pretty clear picture of the companies where 3% goes to help!

Scary idea--pharmaceutical companies further profiting off the backs of those who worked so hard to raise money.

Lisa Moon

After reading yet another of your well-written, thought-provoking posts, I'm finding myself likening this situation with the MDA (spurred by Yanub's comment) with that of Autism posts you've written - with the differing views of the 'must cure' and the 'self-advocacy' groups, if you will.
Ben can clearly speak for himself, yet is apparently not welcome to, not within the confines of that organisation.
It seems to my (admittedly not thoroughly educated) view that any One Group can come along, decide who's 'Needy' and proceed to impose their brand of "Help", whether it's in the name of their G*d, or "Charity" but all too often without consultation o the "Needy" - do we KNOW they are "Needy"? What do THEY think they "Need"? How arrogant we/One Group members can be in assuming what another person/group of people needs!

As for the millions upon millions things like telethons can raise for such charities, I have to wonder how much of that is spent on the pageantry of the telethon itself, even if the host offers their services for free.

And as you say, the money is said to go toward research to help the "poor kids" who likely will never see a benefit in their lifetime... and when/who will?!

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