Wednesday, September 24, 2008


The ALS Registry Act S. 1382 Passes the Senate

This essential legislation was introduced to the House of Representatives of the 109th Congress, Oct. of 2005. Letters, testimonies and dialogue were needed to move this bill along the painful process of becoming law. The task becomes more grueling when questionable numbers of relative incidence keeps this horrid disease off the radar. It took sound relationships of constituents from across the entire fifty states to gain sponsorship and approval of this pending bill. Yet it would go on to the next Congress, another bill, higher huddles, more words with more talk. Hundreds, traveling disabled to Congress for three years to explain their personal heart breaking stories. Testimony to Senate Committees from the critically ill, letters from widowed spouses and still more and more huddles.

Finally, after years of negotiations The ALS Registry Act, S. 1382 came to the Senate floor grouped together with nine other health related bills. These bills all on "Hold" by Sen. Tom Coburn with one more final attempt at passage before this the last 110th congressional session before the election. Sen. Harry Reid asked for unanimous consent without objections on nine bills and was met with nine objections by Sen. Coburn. The ALS Registry Act, S. 1382 was the 10th and last bill read before the Senate President asking for any Objections.

Not a sound was heard. It was three seconds of silence, then the sound of the gavel and S. 1382 was finally going to become law. The birth of this bill would help find a cure for ALS and never again would a patient be buried with valuable clues to this horrible disease. It was the best three seconds of silence this ALS patient ever heard.

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