ALS Registry Act

ALS REGISTRY ACT -- (House of Representatives - September 25, 2008)

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Mr. PALLONE. Madam Speaker, I yield myself such time as I may consume.

Madam Speaker, I rise in support of S. 1382, the ALS Registry Act. ALS, more commonly known as Lou Gehrig's disease, is a fatal, progressive neurodegenerative disease affecting approximately 5,600 Americans each year. It is estimated that as many as 30,000 Americans have ALS at any given time, with an average life expectancy of 2 to 5 years from time of diagnosis.

Today, no single national patient registry collects and stores information on the prevalence and incidence of ALS.

The ALS Registry Act would create a nationwide registry at the Centers for Disease Control and Prevention for ALS and other related motor neuron disorders. The patient registry would collect data which is urgently needed for ALS research, disease management, and the development of standards of care. This will allow us to make real progress in better understanding ALS, and to develop measures for prevention, treatment, and eventually a cure for this dreaded disease.

I would like to thank my dear friend and colleague on the Energy and Commerce Committee Representative Eliot Engel for his dedication to bringing this bill before us today. Eliot and I, along with Nita Lowey, started the same time in Congress, which is about 20 years now. I remember when we had the hearing on this. Mr. Engel is from New York and talked a little about Lou Gehrig. I had actually been to a Yankees' game just a few days before, and I saw so many people wearing Lou Gehrig shirts, and I was amazed after so many years that that would still be the case.

On October 16 of last year, we overwhelmingly passed the House companion to S. 1382, and I strongly urge us to pass this bill by the same margin. Please join me in enacting this important legislation.

I reserve the balance of my time.

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