ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Thursday, September 13, 2012

Ignore And Delay And It Will Go Away

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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