Thursday, October 28, 2010

People With ALS Count. Please Be Sure That They Are Counted!

People with ALS in the United States have never been counted. We really don't know how many people have ALS at any moment. We have relied on estimates from small studies and death certificates. We have buried any clues that could have been gleaned from medical histories or environmental exposures with the victims. That has been a national shame in many ways.

As of last week that changed, but it's important for people with ALS to know that they need to enroll in the CDC's ATSDR U.S. National ALS Registry (a function of the United States government) to insure that they are counted.

Please encourage all of those with ALS to go to to enroll. There is a great deal of white space on that page, so scroll down to get more information.

We'll never connect the dots if we don't start collecting the dots.

Having a U.S. National Registry at the CDC is an achievement, but it does no good unless patients know the importance to them and the investigation of ALS that they enroll. The mission is not accomplished until every person is counted. It's time to get out some bigger or better bullhorns to let every person with ALS know!

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