Ye know, the way this group has been conducting itself, doing its own research collection, questioning EVERYTHING, going out and sifting through tens of thousands of online docs and research, got me thinking the other day after I watched the Gary Cooper film on lou gehrig (the father of ALS). After poking around some reddit threads on MS and ALS, it struck me that, there are hundreds of thousands out there who desperately want answers, but no one is organizing those people to do what WE have been doing here.
Wouldnt it be an interesting thing, if we were to do maybe a PSA video, not specifically on POIS, but a video on how people struck with rare diseases, can organize and conduct research themselves in order to assist the actual organizations conducting medical research? How to get NORD grants?
We have learned that medical society suffers from the same faults and misgivings and falsehoods as any societal organization by virtue of "humans err", and that NOTHING can be assumed when one is seeking answers to their own rare medical conditions.
So the idea is, we create a PSA video on youtube, instructing how people with rare diseases can come together, by creating their OWN forums, their OWN surveys, how to correspond with actual medical colleges and researches, and by doing such a video at the end when people ask well shit where did you guys learn to get so good at doing this, we tell them a little bit about POIS and who we are. By helping other groups of rare diseases learn how to effectively help their own cause in finding a cure for theirs, it could help point people to want to help us spread the word as well. And would be less icky than a video just talking bout how O's make u crazy and painful =P
Oh and hi and merry xmas and all that. ;P
Oh yeah and to those who want a social hobby thats forgiving of people who might suffer from POIS, I would suggest boardgaming =) I've cofounded a local boardgaming club, the only one of its kind in this area strictly for tabletop gaming (and not trying to sell you something, like a gaming store), and we have our own clubhouse in a fancy part of town and been pretty successful at funding it as a non-profit. =)
