We are pleased to share with you that the President’s Fiscal Year 2008 Budget includes nearly $1 million to establish a national ALS registry at the Centers for Disease Control and Prevention (CDC). This is a tremendous victory for the ALS community, especially considering that the budget reduces or eliminates funding for many other health programs. This is the first time that funding for the registry has been included in the President’s budget, a clear indication that the creation of an ALS registry is a priority for the Bush Administration. Because of this, we have a great opportunity to both continue, and increase funding for an ALS registry and build on the efforts already underway at the CDC to establish a national ALS registry (Click here to learn about the projects that have been implemented by the CDC).

The President’s Action also provides important support to our efforts to pass the ALS Registry Act. But, we need your help TODAY!

ACTION ALERT – Contact Congress!

Even though the President’s budget includes funding for an ALS registry, we need your help to pass the ALS Registry Act, which would authorize $25 million for the registry and help make it a permanent program at the CDC. Congressman Eliot Engel (D-NY) is planning to reintroduce the ALS Registry Act in the House of Representatives soon after the President’s Day recess (February 16-23). In advance of the bill’s introduction, we want to generate as many original cosponsors as possible for the legislation. This will build vital momentum and Congressional support for the bill when it is introduced.

You can help build support for the ALS Registry Act today:

* E-mail Your U.S. Representative - We urge the entire ALS community – PALS, families, and advocates – to contact their U.S. Representatives and ask them to become an original cosponsor of the ALS Registry Act. A sample letter you can e-mail to your Representative is available on our website here or by visiting the Advocacy Action Center at www.alsa.org/policy. If you do not know the name of your Representative, simply enter your zipcode in the space provided on the Advocacy Action Center and the site will identify him or her for you.

* Participate in Congressional District Meetings - Over the President’s Day Congressional recess (Feb. 16-Feb 23), ALS Association Chapters will be meeting with Members of Congress while they are at home in their districts to let them know first hand how this disease impacts their communities and to urge them to become original cosponsors of the ALS Registry Act . If you are interested in participating in a Congressional district meeting near you, please contact Patrick Fritz in the Advocacy Department at pfritz@alsa-national.org or 1-877-444-ALSA.

Thanks to the efforts of thousands of advocates from across the country we were able to generate tremendous support for the ALS Registry Act last year as 215 Members of the House and 50 Senators cosponsored the bill. We are confident that we can generate even more support for the bill this year, so please contact your Members of Congress today!

If you have any questions about the ALS Registry Act or outreach to Congress, please contact Patrick Fritz at pfritz@alsa-national.org. If you have questions or would like additional information about the pilot projects underway at CDC, please contact Pat Wildman at pwildman@alsa-national.org.

Thank you for your support!

The ALS Association