Congress Takes Action on ALS Registry Act

On November 14, The ALS Association secured a tremendous victory for people with ALS and their families as the Senate Health, Education, Labor, Pensions (HELP) Committee unanimously passed the ALS Registry Act.  This Senate action comes less than a month after the House of Representatives passed the ALS Registry Act (HR 2295) by a vote of 411-3!   The bill would authorize to establish the first-ever national ALS patient registry at the Centers for Disease Control and Prevention.

The ALS Association’s Northern New England Chapter would like to thank the entire ALS community for their relentless outreach that has led to both victories in the House and Senate. Each of Vermont, New Hampshire, and Maine’s Representatives voted for the ALS Registry Act in the House and nearly all of Vermont, New Hampshire, and Maine’s Senators Senators Sanders (I-VT), Leahy (D-VT), Sununu (R-NH), Snowe (R-ME), Collins (R-ME) have cosponsored the bill. Currently 67 Senators are supporting the ALS Registry Act well above a majority!  Please continue to reach out to Senator Gregg (R-NH) and urge him to support the ALS Registry Act.  It goes without saying that our elected officials have heard our message loud and clear and they have responded!

In fact, during the debate in the House, several Representatives took to the floor to praise the work of The ALS Association and the advocates who have shared their stories and put a face on the disease. They spoke about the individuals and families they met during The ALS Association’s Advocacy Day in Washington as well as those they have met back home in their districts. It is clear that the outreach of advocates at events like Advocacy Day demonstrated to Congress why the ALS Registry Act is so important to the fight for a treatment and cure.

Video footage of Congressman Eliot Engel’s (sponsor of the ALS Registry Act) remarks on the House floor and the text of the debate that preceded the vote is available on The ALS Association website http://www.alsa.org/.

As Members of Congress have repeatedly noted, people with ALS have a powerful story to tell and that is why the ALS Registry Act has passed the House of Representatives: Your stories, your experiences and your outreach make a difference!

The next step for the ALS Registry Act to become law is for the full Senate to vote on the bill, nearly the last step in the legislative process.  While most of Northern New England’s Senators have cosponsored the bill, there’s more they can do. Additionally, it is important for ALS advocates in New Hampshire to contact Senator Gregg and ask that he join his colleagues in supporting the ALS Registry Act.  Please go to the Advocacy Action Center of The ALS Association’s website, www.alsa.org/policy and send an e-mail to them today.   Sample letters are available that have our key messages and which you also can personalize with your story.    And don’t forget to send a thank you letter to your U.S. Representatives who voted for the bill in the House.  Those letters also are available on the Advocacy Action Center. 

Keep up the great work. Together we are making a difference!