Please read about one person with ALS and her experience with a clinical trial, an IRB, the FDA, and a very prominent ALS clinic --
http://barbarabrenner.net/?p=699
If you talk to some former ALS caregivers who have been around awhile, they'll tell you that a lot of people and institutions seem to have an unspoken "ignore and delay and it will go away" approach to solving problems. You see, people with ALS have a very short window of life. Their problems will soon pass. Any ruckus they raise will soon pass.
Or will it?
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