With Over 1,000 New Yorkers Living With ALS, Schumer Announces Passage of Bill to Improve Research & Data Collection for Lou Gehrig's Disease

Press Release

WITH OVER 1,000 NEW YORKERS LIVING WITH ALS, SCHUMER ANNOUNCES PASSAGE OF BILL TO IMPROVE RESEARCH & DATA COLLECTION FOR LOU GEHRIG'S DISEASE

Currently, Scientists Lack Enough Comprehensive Data to Fully Research Fatal Disease Impacting Families Across Upstate New York

Legislation Will Create a Much-Needed National Registry of ALS Data For Scientists' Use

Schumer: ALS Registry Could Take Us One Step Closer to Finding a Cure for Troubling Disorder

As researchers and scientists across the country lack much-needed tools to find a cure to Lou Gehrig's Disease, U.S. Senator Charles E. Schumer announced Senate passage of the ALS Registry Act, which will develop a system to collect and establish a national registry for data on Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's Disease, and other motor neuron disorders that can be confused for, misdiagnosed as, or progress to 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. Senator Schumer is a co-sponsor of the Senate bill.

"This legislation brings us one step closer to finding a cure for ALS, which impacts many New Yorkers and their families," Schumer said. "This national registry will help identify the incidence of ALS in the United States by collecting the data necessary to improve ALS research, management and treatment. This legislation will significantly enhance the nation's efforts to find a cure for ALS."

Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease, is a fatal, progressive neurodegenerative disease that affects motor nerve cells in the brain and spinal cord. As the disease progresses, it erodes a person's ability to control muscle movement, including the ability to walk, talk, and even breathe or wink an eyelid, yet it does not impact their mind. Ultimately, people with ALS may become completely paralyzed; but isolated and awake, alive with the knowledge that they are trapped inside a body they no longer can control. 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.

Currently, scientists and researchers across the country are working to find a treatment and cure for ALS, but they have faced many challenges in advancing our understanding of the disease and ways to combat it. The National ALS Registry will provide researchers with the information and tools they need to learn more about ALS, identify who it strikes and why, and develop news ways to treat ALS, and ultimately, find a cure.

Dorine Gordon, President & CEO of The ALS Association Greater New York Chapter, said "Passing the ALS Registry Act by the U.S. Senate on September 23 marks a huge victory for the more than 1,000 people with ALS and their families in the state of New York. Senator Schumer has been a staunch supporter of our cause and has helped to lead efforts to pass this important piece of legislation. Thanks to his hard work and those of his colleagues in the Senate, we are now one step closer to enacting this critical legislation which will make a difference in the lives of people with ALS not only in New York but across the country."

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.

Schumer today announced both Senate and House passage of the ALS Registry Act, a bill which he co-sponsored.

The ALS Registry Act Would:

· Provide for the creation and maintenance of a single nationwide ALS Registry at the Centers for Disease Control and Prevention (CDC). The registry would collect key data and information as determined by a newly created federal Advisory Committee on the National ALS Registry.

· Enable the CDC to expand upon current registry projects and coordinate and share information with other federal agencies, including the National Institutes of Health and Department of Veterans Affairs.

· Require the Department of Health and Human Services to submit a report to Congress outlining existing and planned disease registries.

The bill has passed both the Senate and House. It will now go to the President's desk for signature.

Source