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, April 10, 2014

And The Answers Are ???


Words from one of the three patients selected to attend the ALS Registry Annual Meeting in July:

Following up from last year, I wasn’t here last year, but one of the big questions I received from patients was, "What were the actions taken from last year’s meeting? Was it productive?" I’m sure many of you knew a great man, Rob Tison, who was here and put a lot of work into trying to give feedback. Just a really good person, and a very smart person. One of the questions I received was, "What was done with that?" How were the questions that were raised last year resolved? I’m sure they all were resolved. I’m sure action was taken, but if not everyone realizes it, it doesn’t do any good.





I find no evidence in the meeting report that the questions were ever answered. I looked and I looked.  It's like the questions just rolled off the backs of everyone.  Click here for the meeting minutes.  If I've missed something, I'm all ears.  We're not so sure that Rob Tison's issues and questions were all resolved. We're not so sure any were resolved.  Time to stop the slow-pitch softball.

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