[Congressional Record Volume 151, Number 130 (Friday, October 7, 2005)]
[Extensions of Remarks]
[Page E2078]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                INTRODUCTION OF ALS REGISTRY ACT OF 2005

                                 ______
                                 

                          HON. ELIOT L. ENGEL

                              of new york

                    in the house of representatives

                        Friday, October 7, 2005

  Mr. ENGEL. Mr. Speaker, I rise to introduce the ALS Registry Act of 
2005 with my esteemed colleague, Lee Terry of Nebraska. We are proud to 
have the support of over 40 other bi-partisan members of Congress today 
as original co-sponsors of this important legislation.
  Amyotrophic Lateral Sclerosis (ALS) is a fatal, progressive 
neurodegenerative disease that affects motor nerve cells in the brain 
and spinal cord. While the great baseball player, Lou Gehrig, put a 
national face on ALS over 65 years ago, my own family was devastated by 
the death of my grandmother, Dora Engel, who passed away from ALS in 
her 50s. Unfortunately, families across the Nation face the challenges 
and experience the suffering associated with ALS every single day. 
5,600 people in the U.S. are diagnosed with ALS each year, and it is 
estimated that as many as 30,000 Americans have the disease at any 
given time. The average life expectancy for a person with ALS is two to 
five years from the time of diagnosis. The causes of ALS are not well 
understood and there is no known cure. We must provide hope to change 
this tragedy today.
  Surprisingly, a single national patient registry which collects and 
stores information on the prevalence and incidence of ALS does not 
currently exist in the United States today. The legislation I am 
introducing with Congressman Terry, would create an ALS registry at the 
Centers for Disease Control and Prevention and will aid in the search 
for a cure to this devastating disease. The registry will collect data 
concerning: the incidence and prevalence of ALS in the United States; 
the environmental and occupational factors that may contribute to the 
disease; the age, race or ethnicity, gender and family history of 
individuals diagnosed; and other information essential to the study of 
ALS. The registry will also provide a secure method to put patients in 
contact with scientists conducting clinical trials and scientists 
studying the environmental and genetic causes of ALS.
  We need to provide our Nation's researchers and clinicians with the 
tools and information they need to make progress in the fight against 
ALS. The data made available by a national registry will potentially 
allow scientists to identify causes of the disease, and maybe even lead 
to the discovery of new treatment, a cure for ALS, or even a way to 
prevent the disease in the first place. This is good public policy.
  The establishment of a registry will bring new hope to thousands of 
patients and their families that ALS will no longer be a death 
sentence. I strongly urge the swift consideration and passage of the 
ALS Registry Act of 2005.

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