Als Registry Act
I thank my good friend, the gentleman from New Jersey (Mr. Pallone), with whom I have worked so closely during these past 20 years on so many things, and he is doing a wonderful job as chairman of our Health Subcommittee on the Energy and…
I thank my good friend, the gentleman from New Jersey (Mr. Pallone), with whom I have worked so closely during these past 20 years on so many things, and he is doing a wonderful job as chairman of our Health Subcommittee on the Energy and Commerce Committee.
Madam Speaker, I am so proud that through hard work and compromise with the Senate, that today we will take up a final version of the ALS Registry Act. The House has passed this bill before. It was stuck in the Senate. We finally have it shaken loose and it is back with the Senate version which we are proud to all support. Thanks to this legislation, we will provide for the creation and maintenance of a single, nationwide ALS registry at the Centers for Disease Control and Prevention.
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. Approximately 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 2 to 5 years from the time of diagnosis. The causes of ALS are not well understood, and there is no known cure.
I first became aware of this disease through my grandmother. My father's mother was diagnosed with this disease. I was only 2\1/2\ when she passed away. As Mr. Pallone mentioned, the most famous person with this disease is Lou Gehrig. I come from the Bronx where the Yankees play, and Yankee Stadium just had its last game on Sunday evening. The clips that we saw were from that famous speech that Lou Gehrig made at Yankee Stadium. You could hear the echoes reverberating, saying that he felt he was the luckiest man on the face of the Earth. And it is fitting that today we pass this bill, just a few days after Yankee Stadium where Lou Gehrig toiled for so many years is closing. This is a fitting tribute to Lou Gehrig.
A single national patient registry which collects and stores information on the prevalence and incidence of ALS does not exist in the United States today, believe it or not, and that is what this bill is going to change.
The establishment of a national registry will help identify the incidence and prevalence of ALS and other motor neuron disorders in the United States and collect data which is urgently 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.
I would like to thank Steve Gibson and Pat Wildman of the ALS Association for their partnership on this bill. We have worked with them for so many years, as well as William Garner of Chairman Dingell's staff for his work on this bill. I would also like to thank John Ford, formerly of Chairman Dingell's staff and Katherine Martin, formerly of Ranking Member Barton's staff who worked so diligently on this bill prior to its original House passage in 2007.
I thank all my colleagues for it and urge them to pass this bill. It has been a long time coming, but it is finally here.