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.

Monday, June 8, 2009

ALS Registry Act - Do We Have Action to Report?

Please take a moment and read the ALS Registry Act text at the link above.

At the ALS Advocacy Conference in May, Dr. Bruijn reported that the pilot registry investigators would be meeting in June to report findings.

Let's hope that there is news to report soon. People are literally dying to get a comprehensive registry moving. June is a long month when you are waiting for news.

Also, let's hope that the CDC has a public report soon on who has the no more than 27 seats on the ALS Registry Advisory Committee.

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