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Rep. Engel Says First ALS Registry Data Release Will Help Spur Scientific Research

Washington, D.C. -- Congressman Eliot Engel, the lead sponsor on a bipartisan law to create an ALS Registry, announced that the ALS Registry released its first data report and said that he believes the data will help increase scientific research into Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease.

ALS is a fatal disease that destroys a person’s ability to control muscle movement. The life expectancy for a person with ALS is two to five years from the time of diagnosis, and as the disease progresses, victims lose their ability to talk, walk and even breathe. There is no cure for ALS, but this registry is a significant step towards better understanding the disease.

“The search for a cure for ALS has eluded scientists for far too long. Thanks to the ALS Registry, scientists can now collect and analyze data directly relevant to ALS, and other related disorders. This information provides a critical, missing link for ALS research and disease management.”

“The ALS Registry brings new hope to thousands of patients and their families that one day ALS will no longer be a death sentence. My family was devastated by the death of my grandmother, Dora Engel, who is believed to have passed away in her 50s as a result of ALS,” said Congressman Engel.

According to the Centers for Disease Control and Prevention (CDC), the ALS Registry has already led to a better understanding of possible risk factors for the ALS. Among the findings: ALS is more prevalent among men, Caucasians, and people ages 60 to 69 years old.

“None of this could have been accomplished without the leadership of Congressman Engel. He championed our cause nearly 10 years ago when he introduced the ALS Registry Act. Through his efforts, today we have the largest ALS research project ever created,” said Dorine Gordon, ‎President & CEO of the ALS Association Greater New York Chapter. “This report is an important first step and adds to our understanding of the disease. We welcome continued progress to find the cause and effective treatment for ALS.”

 

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