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, April 19, 2011

Here Is An Interesting Trip Down Memory Lane

Remember that on October 8, 2008, President Bush signed the ALS Registry Act into law after literally years of work by ALS advocates and organizations.



Only within the last several months some helpful documtation was added to the CDC's ALS website at https://wwwn.cdc.gov/ALS/ALSResources.aspx .



When you have some relaxing reading time, take a look at the 2009 ALS-MS Annual Meeting Summary Report - PDF file which you can also download here.

As you peruse this report that puts you in the midst of the group guiding the development of the new ALS Registry for the United States, keep in mind that the meeting was held around eight months after the ALS Registry Act had been passed. It was also held sixteen months before the ALS Registry online web portal launch.


Every month represents around 500 American deaths from ALS.

Interesting reading, eh?

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