The ALS Registry Act survived the ticking clock of the 110th Congress. Now it's on to President Bush for his signature.
This bill deserves more than a cursory signature with a commemorative pen. After all, ALS is a disease that steals the ability of people to write. Many can still shake your hand with strength, but they have lost the dexterity in their fingers to button a shirt or write a note or turn a key in a lock. As those manual abilities slip away, they never come back. Lou Gehrig's is a cruel disease.
Mr. President, how about signing that bill with some empathy to the people who will finally be counted by the ALS Registry? How about trying one of the hundreds of writing implements that people with ALS rig up so that they can still write? Some are simply fat pens with grips intended for small children. Some are literally pens strapped to their hands and wrists. Give it a try. It makes ALS very real to try the equipment that ALS requires. A White House photo op with some people with ALS showing you how to use one of their implements to sign the bill would speak volumes to the reasons why this registry is so important.
Saturday, September 27, 2008
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