Pictured (Left to Right):Marlene Fraehmke, Tom Fraehmke, Adele Zinberg, Chris Pendergast, Congressman Eliot Engel (D-NY-17th), State Senator John Flanagan (R-NY-2nd) and Stan Silver at the 13th Annual Lou Gehrig Sports Awards Benefit.


House of Representatives Votes to Create National Registry for ALS
October 16, 2007

The House of Representatives took a major step in the fight against ALS on October 16 when it passed The ALS Registry Act (H.R. 2295) by an overwhelming 411-3 vote. The legislation would establish the first ever national patient registry of people with ALS to be administered by the Centers for Disease Control and Prevention.

The ALS Registry Act enjoyed broad bipartisan support leading up to the vote as more than 275 Representatives had cosponsored the legislation. During debate on the bill, Members of Congress praised the work of The ALS Association and the advocates who have shared their stories and put a face on the disease.

Members who did not vote in favor of the bill include:
- Jeff Flake (R-AZ)
- Paul Broun (R-GA)
- Ron Paul (R-TX)

Senate Committee Passes the ALS Registry Act
November 14, 2007

On November 14, 2007, the Senate Health, Education, Labor, and Pensions (HELP) Committee unanimously passed the ALS Registry Act (S. 1382) by a bipartisan voice vote! The bill is now cleared for consideration by the full Senate, nearly the final stage of the legislative process.

During the session, the Committee made minor changes to the bill to conform to previous legislation that has moved through the Senate and to add language to require that the Department of Health and Human Services provide a report to Congress on its work on disease registries.

ALS Registry Act Senate Update
December 14, 2007

Earlier this week, the Senate was prepared to vote on the ALS Registry Act under a procedure that allows the Chamber to act quickly on non-controversial and widely supported legislation, such as the ALS Registry Act. However, under Senate rules all Senators must agree to the use of this procedure. Unfortunately, the registry bill (and several other health bills) was not considered because objections were raised about the use of this procedure.

The Advocacy Department continues to work closely with our champions in the Senate, including Majority Leader Harry Reid (D-NV) and Senator John Warner (R-VA), to pass the ALS Registry Act as soon as possible.

Congress Passes Legislation for Additional $3 Million in Funding for ALS Registry
December 20, 2007

Prior to adjourning for the year late yesterday, The ALS Association secured a tremendous victory as Congress passed legislation to provide an additional $3 million in funding for the ALS registry at the Centers for Disease Control and Prevention. The funding builds upon and expands the pilot projects already underway at the CDC and represents a $2 million increase over last year. This is a great accomplishment considering that it comes during a year when most other health programs were cut or received little or no additional funding.

The registry funding was included in the omnibus appropriations bill, which is expected to be signed into law by the President. To date, Congress has provided nearly $5 million to support ALS registry projects that are evaluating the science to guide the creation of a national ALS patient registry.

Congress will reconvene in January to begin the second session of the 110th Congress and we will continue to urge the Senate to pass the ALS Registry Act (S. 1382) as soon as possible upon their return. Because each Congress lasts for a period of two years, the bill does not have to be reintroduced and we can continue to build on the progress that was achieved this year when the House of Representatives passed the ALS Registry Act and the measure also was passed by the Senate Health, Education, Labor and Pensions Committee.


For infomation about this legislation or to help advocate for ALS contact Kate McNamee at mcnamee@als-ny.org or 800-672-8857