About This Legislation:

Amyotrophic lateral sclerosis (ALS) is a progressive disease which affects thousands of Americans. However, a comprehensive national system to collect and catalogue information on the incidence of ALS in the United States does not exist.

This legislation authorizes federal funding ($25,000,000 for fiscal year 2008, and $16,000,000 for each of the fiscal years 2009 through 2012) to establish a national registry. This bill directs the Centers for Disease Control and Prevention to:

• Develop a system to collect data on ALS and other motor neuron disorders.
• Establish a national registry for the compilation and storage of such data.
• Establish an Advisory Committee on the National ALS Registry to report and make recommendations to the Secretary of Health and Human Services.
• Coordinate with existing federal, state and local registries.
• Award grants to nonprofits to assist in the collection and reporting of data.
• Distribute information to the National Institutes of Health and Department of Veterans Affairs.

Legislative Support:

The House bill was sponsored by Representative Eliot Engel (D-NY 17th) and had 238 cosponsors including 164 Democrats and 74 Republicans. Senator Harry Reid (D-NV) sponsored the Senate bill which had 66 cosponsors including 40 Democrats, 2 Independents, and 24 Republicans.

Status:

The ALS Registry Act passed Congress and is law.