Tester thanks Montanans who urged him to cosponsor ALS legislation
Legislation establishes a national ALS registry
(WASHINGTON, D.C.) – Senator Jon Tester today called to thank two Montanans who have been leaders in the creation of a national registry for patients who suffer from ALS.
Tester was so moved by their stories, he co-sponsored legislation in Washington establishing such a registry. The measure passed the Senate today.
A national registry will aid in the search for a cure to this debilitating disease by collecting data that is currently scattered around the country. A central database will allow researchers to better investigate environmental, historical and occupational factors that may contribute to the disease. It will also connect families and those battling ALS with each other.
After the measure passed the Senate, Tester called Larry Puccinelli of Anaconda. In August, Puccinelli gave Tester a petition with hundreds of signatures asking him to support the legislation.
Tester also received hundreds of signed petitions from Cindy Keim of Havre, whose husband Kevin died of ALS last year.
"ALS is a heartbreaking disease, but it for tough fighters like Larry, it doesn't break spirits," Tester said. "His determination and commitment to better research and treatment is truly an inspiration for me. Fighting for the ALS Registry Act in the Senate is the least I can do in honor of him and everyone who struggles with this disease."
Amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig's Disease, destroys nerve cells that control voluntary muscle movement. There is no known cause or cure.
It's unclear exactly how many Montanans suffer from ALS because there currently is no national registry, but statistics indicate the disease affects about 75 people in the Big Sky State.
Puccinelli, a former pipefitter who goes by the nickname "Pooch," was diagnosed with ALS in April of 2006. He can no longer speak and has difficulty moving. Despite the disease he organized "Pooch's Posse," the largest team taking part in the Walk to D'Feet ALS fundraiser in Missoula last month.
"Don't take the little things for granted like talking and eating," Puccinelli stated. "You still have to 'Believe' in God and yourself. 'Believe' has been my motto since I was diagnosed."
Max Baucus, Montana's senior senator is also a co-sponsor of the legislation.
"From Lou Gehrig's farewell speech when he declared himself the luckiest man on earth, to Larry's brave fight, we know that ALS can take people's bodies, but it will never take their mind, it will never take their heart, and it will never take their soul," Baucus said. "And I'm proud of Jon for fighting this legislation to make sure that ever resource is available to cure this disease."
The legislation that passed the Senate authorizes $25 million dollars to create the ALS registry.
The ALS Registry Act is S. 1382, sponsored by Senate Majority Leader Harry Reid of Nevada. Tester is one of 43 cosponsors.