House Subcommittee Passes ALS Registry Act

We are extremely pleased to report that this morning, the House Energy and Commerce Committee Subcommittee on Health unanimously passed the ALS Registry Act (HR 2295). The bill is now cleared to move forward in the House and next will head to the full Energy and Commerce Committee. This is a tremendous victory and is one of the most critical steps in the legislative process, as most bills introduced in Congress never make it “through Subcommittee.”

During this morning’s session, Subcommittee Members repeatedly stressed the importance of establishing a national ALS registry in the fight for a treatment and cure and spoke of the personal connections many have developed with family and constituents who have been touched by the disease. Members also praised the efforts of The ALS Association and advocates for helping to lead the fight for the bill and for our continued outreach to Congress over the past two years. Since the ALS Registry Act did not specify funding levels for the registry beyond Fiscal Year 2008, the Subcommittee also agreed to authorize $16 million per year in FY 2009-2012 in addition to $25 million in Fiscal Year 2008.

The Subcommittee’s action reflects the strong bipartisan support generated by ALS Association Chapters and advocates from across the country. A total of 261 House Members – well over a majority – have signed on in support of the bill! The Advocacy Department will continue to work closely with the Committee as the bill moves forward.

In the meantime, it is important that Chapters and advocates continue to focus outreach on the Senate. Although we are now closer than ever before to passing the ALS Registry Act, we need to build additional support in the Senate. Currently nearly 40 Senators have cosponsored the ALS Registry Act (S. 1382) and we encourage Chapters and advocates to contact their Senators to ask them to cosponsor this critical bill.

Sample letters you can send to your Senators are available in the Advocacy Action Center of our website, here. A list of those Senators who have and have not cosponsored the bill also can be found in the Advocacy Action Center here.

Thank you to everyone who has contacted their Members of Congress. Your outreach is making a difference! We need you to continue to stay involved in our efforts and together we can pass the ALS Registry Act this year!

If you have any questions or would like additional information, please contact the Advocacy Department at advocacy@alsa-national.org or 1-877-444-ALSA.