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Lou Gehrig's Patients Get Their Bill Blocked

January 7, 2008 - by Donny Shaw

Leon Peek writes:

>The ALS Registry Act, S. 1382, has been frozen by Senate trickery. As a person coping with ALS my dream is to keep it on the front page. This century old disease deserves more than a whisper.

Leon also passed along a link to his blog where he has more to say about the hold Senator Tom Coburn (R-OK) placed on this bill to establish a program for tracking patients with Lou Gehrig’s disease:

>ALS, commonly known as Lou Gehrig’s disease, is the most horrible disease in our modern times. ALS is the disease that takes a deadly toll on the body by a process of total muscle paralysis, which causes death in a very short time. While the amount of those being diagnosed is on the rise our numbers remain just low enough for science and the medical companies to turn and look away. ALS is the disease we like to whisper about. Reminds me of the homeless Veteran standing along the roadway with a cardboard sign that reads “Hungry, God Bless.”
>The person with the three identities is Senator Tom Coburn of Oklahoma. He is the Doctor that thinks the Center for Disease Control collecting data on the variables of ALS is a waste of money. The ALS Registry Act was written and introduced four years ago. Endless hours by ALS Advocates and congressional time taken to approve and make sure it is acceptable has all been lost. The Senator found a way to kill the clock just before the other team won; Senate trickery called a “Hold.”

Before adjourning for the year, Coburn vowed to put a hold on any bill that didn’t meet a set of criteria that he outlined on his website. Apparently, this is one of the bills that didn’t make the cut, but Coburn has not yet issued a specific explanation as to why. He’s got a lot of explaining to do with this one — it is co-sponsored by two-thirds of the Senate and the House of Representatives already passed their version of it by an overwhelming vote of 411-3.

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gkdaw_usa 07/13/2008 9:05pm

What is the use of stem cell research if it dose not DO a thing to help People or is this one it could ?

Anonymous 01/08/2008 4:42pm
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This is really outrageous! Keep in mind that ALS patients typically live 2-5 years (on average) after diagnosis. Some people have been working their whole “lifetime” to see this bill passed! We need to let Senator Coburn hear our voices!!

Anonymous 01/11/2008 8:33am
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Mr. Kevin LeRoy Bailey, 41, died January 8, 2008 at Lakeland Regional Medical Center after a long battle with ALS.

He was a lifelong resident of Vero Beach, FL; graduated from Vero Beach High School; attended Warner Southern College in Lake Wales, FL; and received his Bachelor’s Degree from Azusa Pacific University, Azusa, CA.

Mr. Bailey was a lifelong member of the First Church of God, a member of the National Association of Enrolled Agents, the National Association of Tax Professionals, and the Florida Society of Enrolled Agents.

Memorial donations may be made to the ALS Association, 1933 14th Avenue, Vero Beach, FL 32960.

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