Congress Passes Legislation for Additional $3 million in funding for ALS Registry

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. Additional information about the pilot projects is available here.

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.

In the meantime, we would like to thank ALS Association Chapters and individual advocates for their continued efforts. Together, we are making a difference!