Here is a letter I sent to multiple news outlets. We shall see if anyone pays attention.
Letter to the editor:
As a sufferer of the fatal disease known as Amyotrophic Lateral Sclerosis (ALS), I had hopes of receiving a very meaningful present this Christmas. It appeared that the desperately needed ALS Registry Act was going to finally pass through Congress. But those hopes were dashed by one man. Republican Senator Tom Coburn of Oklahoma.
This Senator worked late while others adjourned for the Holidays. His scrooge style mission was to place a “hold” on selected bills, a procedural maneuver that allows a single senator to prevent a bill from being passed quickly without a roll-call vote or floor debate. The bill held hostage is the ALS Registry Act S.1382. This legislation would authorize the establishment of an ALS Registry at the Centers for Disease Control and Prevention. The House of Representatives passed the bill on Oct.16, 2007 by an overwhelming 411-3 vote. The Senate H.E.L.P. Committee favorably reported the Senate version of the bill on Nov. 14, 2007 and more than two-thirds of the Senate has cosponsored the bill.
ALS, also known as Lou Gehrig’s Disease, is a neurodegenerative disease with no known cause or cure. It afflicts people of all ages and is completely nondiscriminatory of color, race or gender. The nerves that operate the voluntary muscles begin to sicken and die, the muscles begin to atrophy, leaving the patient paralyzed, speechless, unable to swallow and eventually breathless.
The establishment of a national registry will help identify the incidence and prevalence of ALS in the United States and collect data which is urgently needed for ALS research, disease management and the development of standards of care. A national ALS registry also will promote a better understanding of the disease, help to determine causes of ALS and significantly enhance the nation’s efforts to find a treatment and cure for ALS.
Unfortunately, Senator Coburn is abusing his power and is living down to his reputation as an obstructionist. He is doing all he can to stall this bill. Iowa Senators Tom Harkin and Chuck Grassley have already signed on as cosponsors of this legislation. However, now is when they must really prove that they care about the passage of this bill. They need to pressure Senator Coburn to withdraw his hold and allow this hope-giving legislation to pass.
I can no longer work. I can barely speak. My wife has to feed me, clothe me, and bathe me. Hope is just about all we have left. I will not let Senator Coburn rip that away without a fight.
email your senator
Wall Street Journal article