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ALS Registry Act Passes US Senate

By fec139     Sep 25, 2008 in Science
The ALS/Lou Gehrig's Disease Registry Act, now passed through both houses of Congress, will be useful in finding a cure, or at least better treatments, for this incurable, progressive and usually fatal degenerative neuromuscular disease.
As researchers and scientists across the country [and worldwide] to find a cure, or even more effective treatments, for ALS/Lou Gehrig’s Disease, it was announced that the United States Senate passed the ALS Registry Act, which will develop a system to collect data and establish a national registry on ALS/Lou Gehrig’s Disease, and other motor neuron disorders. These neuromuscular diseases are often confused for other disorders like Multiple Sclerosis, Parkinson's, spinal-cord damage and other conditions. In fact, there have been numrous cases where patients with misdiagnosed ALS have gone through the wrong treatments for years, or unnecessary surgery, before finding they had ALS. The bill passed the Senate HELP and House Energy and Commerce committees by unanimous vote in 2007 and recently passed the House. After yesterday’s Senate passage by unanimous consent, the bill will now go to the President’s desk. New York State Senator Charles Schumer is a co-sponsor of the Senate bill.
What does this mean for ALS patients?
It means that scientists and researchers are one step closer to finding a cure for ALS, which is currently incurable, with treatment limited to medications that alleviate symptoms. The national registry will help identify the incidence of ALS in the United States by collecting the data which will identify patterns and commonalities. These findings will improve ALS research, management and treatment. This legislation will significantly augment the nation’s efforts to find a cure for ALS. In May, 2007, I was part of a delegation of ALS patients, our families and friends, caregivers, and representatives of the ALS Association from all 50 states, who traveled to Washington DC to lobby for the passage of this bill, so I am proud to have been part of that.
Amyotrophic Lateral Sclerosis (ALS), or "Lou Gehrig’s Disease", is a fatal, progressive neurodegenerative disease that affects motor neurons in the brain and spinal cord, and thus all voluntary muscle activity. As the disease progresses, the patient loses the ability to walk, talk, and even breathe, yet it does not affect the mind. Ultimately, people with ALS may become completely paralyzed; but totally aware of his surroundings. The disease does not discriminate and can strike anyone at anytime regardless of their age, gender or race, although military veterans are approximately twice as likely to die from ALS as those who have not served in the military. The average life expectancy for a person with ALS is 2 to 5 years from the time of diagnosis. The causes of ALS are not well understood and there is no known cure or effective treatment. The Sanofi-Aventis Pharmaceuticals' drug Rilutek [generic name: riluzole] is the only FDA-approved medication for ALS; it only minimally slows the disease's progression, prolonging survival by only an average of three months.
The ALS Registry Act, S.1382, amends the Public Health Service Act to require the Secretary of Health and Human Services, acting through the Director of the Centers for Disease Control and Prevention (CDC), to develop a system to collect data on ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, or progress to ALS; and to establish a national registry for the collection and storage of such data to develop a population-based registry of cases. The bill has passed both the Senate and House. It will now go to the President’s desk for signature.
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