Here is an interesting letter that is pertinent to the U.S. national ALS Registry and the substantial advocacy work that has enabled it. It was written by a gentleman with ALS.
http://bit.ly/fN2TCk
Many of us look forward to the response and to some status information on the registry project. People with ALS have all their marbles (and many obviously have a considerable marble count), and they have skin in this substantial government project. This has been described as a well-funded project by the CDC. We all hope that it delivers.
Any reply???
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