Last year immediately before the August congressional recess, ALS advocates were disappointed that one Senator was successful in blocking passage of the ALS Registry Act.
Shortly after the recess, on September 23, 2008, the act passed the Senate and was quickly signed into law.
Now we still wait for the deliverable. It is an excruciatingly long wait for the thousands of Americans with ALS and its ticking clock.
As we approach the September 23 anniversary of a legislative victory, we hope that there will be news regarding the registry.