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.
Nick Huber
email your senator
Wall Street Journal article
Nick, I’m crossing fingers and toes for you. And if I can figure out how to email Norm Coleman without having to fill out a stupid form, I’ll forward your letter on to him.
I have emailed both our senators urging them to take action. I’m saying a prayer for a positive outcome!
Nick,
You captured my thoughts so eloquently. I am also one with ALS who has worked long and hard to see the registry legislation passed and am so disappointed to see that one man can frustrate this work. As I read through his website and learned more of his philosophy it seems to me that we got caught up in a much larger and justified battle. As much as I want to see the registry come into being, it is not my sense that Sen. Cobrun is one to back down when it comes to principle. Too bad our cause got enmeshed in his.
His own letter to all his colleagues in advance of his “hold” tactics, points out that there were and are means by which to save some of the 80 bills he has on his hit list. Unfortunately for us, our Senators lack the will to take action when it counts, and that one Senator has the guts to stand firm even when it affects some mighty emotional causes.
Changing one Senators mind has a far better chance than imagining the 99 other Senators will get backbones.
Very good letter, Laus, and I’m glad you sent it on. Not to mention you are only 28 and were afflicted w/ the disease when you were only 23.
Nick,
I was so glad to find your blog! I didn’t know about it until last night, when a friend of my fiance’s found out my mom had had ALS, and then started telling me about this blog that she has been reading of a guy in his 20s who has ALS. As she talked about the blog and I talked about you, we quickly realized that we were talking about the same person! She hasn’t met you, but read about your blog in some Luther alumni magazine, has been touched by your story, and reads your blog regularly. So you are reaching people that you don’t even know about!
I’ll read up on your old comments too. My dad is now in Arizona so I get decidedly less Storm Lake news.
Best wishes in the new year. I’m still praying for a cure.
Love
Jenny
Very powerful letter Nick, well done. I’m not sure if there is much that I can do up here in my neck of the woods, but if there is just point me in the right direction and I am there!!
xx