Wednesday, September 8, 2010

We Need Our Registry! Over 16 Americans Croak From ALS Every Day (Or So We Think)

This morning we learned that our U.S. government conducts an important and thorough census of frogs every year.

Why has it taken Acts of Congress, far too many years, repeated trips to Washington by advocates, thousands of emails, millions and millions and millions of dollars, and we still don't have a registry of cases of ALS in the United States?

We get it that the frog census is important. It seems that our government is motivated and smart about some things but not about others. The "others" are Americans who are lost every day to Lou Gehrig's Disease and whose clues are buried with them. The human ALS carnage continues and we still don't have a deliverable from the CDC so that the dots might be collected.

This is a wart on our national conscience.

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