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.

Tuesday, December 20, 2016

We Got Big Fluffy Slippers For Christmas

A long-awaited report has finally emerged from this year's blacked out CDC ALS Registry Annual meeting: https://wwwn.cdc.gov/als/Download/2016%20ALS%20Annual%20Meeting%20Summary%20Report%20Executive%20Summary.pdf

Please take a look.  It's easy reading.

It's a beginner's primer on the basics of the CDC's ALS Registry project.  It contains no specifics on any critical issues that may have been discussed at that meeting. There is no information on any decisions or advice from the participants.  Executive Summary?  Hardly.

We deserve specifics. We deserve metrics. We deserve accountability. We deserve transparency. We deserve results.

We don't deserve fluff.

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