[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. ELIOT L. ENGEL

                              of new york

                    in the house of representatives

                          Monday, May 14, 2007

  Mr. ENGEL. Madam Speaker, I rise to re-introduce the ALS Registry Act 
of 2007 with my good friend, Lee Terry of Nebraska. We are proud to 
have the support of over 80 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 personally 
affected when my grandmother, Dora Engel, was diagnosed with the fatal 
disease and passed away when she was only 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 re-
introducing with Congressman Terry, would build on a fiscal year 2006 
Congressional appropriation which directed the Centers for Disease 
Control to evaluate the science to guide the creation of a national ALS 
Registry. The Engel/Terry legislation will 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 information gained from the ALS 
registry will also strengthen a disease clearinghouse's ability 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 2007.

                          ____________________