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re: Who comes up with these lame challenges?

Posted on 8/21/14 at 7:52 am to
Posted by LNCHBOX
70448
Member since Jun 2009
84536 posts
Posted on 8/21/14 at 7:52 am to
quote:

Would be better locally.


I agree. But given the choice of no donations, or $30 million the way it's happening currently, why complain about what's currently happening? That isn't meant specifically for you. Just a question in general.
Posted by drunkenpunkin
Louisiana
Member since Dec 2011
7659 posts
Posted on 8/21/14 at 8:04 am to
The $31.5 mill does not even scratch the surface on research. Very little, if any of that, will trickle down to families. Research is great, but. Do you know how long it takes to develop a drug and have it FDA approved? And do you know the average life span of an ALS patient? These people need medicine, reliable and accessible vehicles, carerakers, etc. And they need that now. The national org will not help with that. Don't believe me? Call corporate and tell then you have a relative with ALS and your wheelchair lift is broken. They will give you a list of resources outside the organization, most of which will be dead ends. That's what bothers me about it. People don't know where their money is going.
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