View Poll Results: Single repository for ALS research info?
Yes - this would be extremely valuable and widely used 4 100.00%
Maybe - but few people are interested in that amount of detail 0 0%
No - not worth the effort to create and maintain 0 0%
I don't know 0 0%
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Old 06-12-2013, 03:51 PM #1 (permalink)
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Default ALS research info repository

I want to see all research that is proposed, funded, who is funding it & how much $$, unfunded, underway, etc in one place. You can get a lot of information by digging through about a dozen different websites, but has anyone made an effort to put it all together in one place and get researchers, MDA, ALS Association, ALSTDI, ALSRP, Project ALS, etc to provide updates?

There's a lot of stuff going on, and a lot of discussions in different places but it is overwhelming for anyone with even a basic understanding of the science let alone to newly diagnosed PALS, their families, etc.
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Old 06-14-2013, 10:25 PM #2 (permalink)
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Default Re: ALS research info repository

Yes I agree with you. Additionally the statistics on how many PALS are living in each state. Obviously we don't have many in Hawaii, no ALS clinic here. Planning on going to the first Walk for ALS in Sept and hoping to meet others.
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