[Congressional Record Volume 153, Number 79 (Monday, May 14, 2007)]
[Extensions of Remarks]
[Page E1042]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




              INTRODUCTION OF THE ALS REGISTRY ACT OF 2007

                                 ______
                                 

                             HON. LEE TERRY

                              of nebraska

                    in the house of representatives

                          Monday, May 14, 2007

  Mr. TERRY. Madam Speaker, I rise today to acknowledge the 
introduction of The ALS Registry Act of 2007 by my colleague Eliot 
Engel of New York and myself. A similar bill introduced in the 109th 
Congress, H.R. 4033, garnered the support of 215 of our colleagues, 
nearly 50 percent of the members of the House of Representatives. 
Today, we are joined by 80 additional original cosponsors in this 
effort.
  Amyotrophic Lateral Sclerosis (ALS) is a fatal, progressive, 
neurodegenerative disease affecting motor nerve cells in the brain and 
spinal cord. Approximately 5,600 people in the U.S. are diagnosed with 
ALS, also known as Lou Gehrig's Disease, each year. It is estimated 
that as many as 30,000 Americans have the disease. The average life 
expectancy for a person with ALS is 2 to 5 years from the time of 
diagnosis. There is no known cure for ALS.
  There is currently no single national patient registry which collects 
and stores information on the prevalence and incidence of ALS in 
existence in the United States. The establishment of a national 
registry will help identify the occurrence and frequency of ALS and 
other motor neuron disorders and collect data which is badly needed for 
ALS research, disease management and the development of standards of 
care in order to significantly enhance the nation's efforts to find a 
treatment and cure for ALS.
  All diseases bring hardships on those afflicted, but ALS is 
particularly cruel in the quickness of the onset, the severity of the 
symptoms and the fatal nature of the condition. The provisions in our 
bill creating a nationwide registry for persons afflicted with ALS are 
important steps forward in strengthening the efforts to understand, 
treat and one day eradicate this terrible disease. I urge my colleagues 
to support and cosponsor the ALS Registry Act and I am proud to join my 
friend Mr. Engel in bringing forward this important legislation.

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