3 ms·
This summer I met another guy who had chordoma, Josh Sommer. He's done a lot of amazing work helping to spark more research into the disease. Your page was the
by h34t 17y ago
This summer I met another guy who had chordoma, Josh Sommer. He's done a lot of amazing work helping to spark more research into the disease. Your page was the last kick in the pants I needed to look up a fundraising email he'd sent me awhile back and make a small contribution. Thank you.
When Josh first told me about chordoma, the question I asked myself was, "How can any disinterested party rationally decide to support a rare disease, when other diseases affect more people?". Your chart/discussion about the possibility of there being a higher ROI for rare disease research than for 'well established' disease research finally got me over this hurdle. Even though it has no numbers behind it, so I am not left "fully convinced" of anything, it at least created the possibility-space in my psyche that perhaps there is more reason to go after rare diseases than I'd realized.
In reality the emotional reason I have to give (having met Josh) is still a big reason why I care, but the attempt at a rational argument was the little nudge that pushed me over the edge: What if there are many such rare diseases that could benefit immensely from just a small fraction of the research that the big ones get? ...And what if studying these edge cases will also result in unexpected discoveries that have other implications?
"The more astute reader might immediately challenge this graph" line helps too. It makes me feel confident that you aren't trying to skew things one way without fully acknowledging the limits of your knowledge and the bias you hold.
Small comments:
* the "cash is king" line put me off a bit, and I think it could be erased without losing any oomph. In the big picture, it's not just about cash, it's also about getting scientists interested, helping coordinate the research, all sorts of things. (Though it's true that cash may be the only way for a normal person to contribute)
- chasingsparks 17y agoDeleted the Cash is king comment. You're the second person to say that. There is also an edge case potential. That is another point i will add to the page in a bit. Re: Josh. We're not strangers ;) http://pathdependent.com/2009/11/04/preface_to_fundify/ http://pathdependent.com/2009/11/04/preface_to_fundify/ P.S. Thanks for the contribution!
- h34t 17y agoYou are most welcome. It is difficult (though not impossible, my life hasn't been without blemish) to imagine what it must be like to have a prognosis like yours. I admire everything you are doing to combat it.