WE DID IT!



The Advocacy Department is excited to let you know that this afternoon, the House of Representatives passed the ALS Registry Act by a vote of 411-3! This is a tremendous victory for people with ALS and their families across the country as the bill would authorize $89 million over five years to establish the first ever national ALS patient registry at the Centers for Disease Control and Prevention.

We would like to thank the entire ALS community for their relentless outreach to Congress that led to today’s victory. It goes without saying that your Representatives have heard our message loud and clear – and they have responded!

In fact, during the debate, 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 remarks on the House floor is available here and the text of the debate that preceded the vote is available here.

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!

Urge Your Senators to Cosponsor the ALS Registry Act!

With the House passing the ALS Registry Act, we have built tremendous momentum to pass the bill in the Senate. To date, 58 Senators have cosponsored the ALS Registry Act, just two shy of the 60 that are needed to help move the bill forward. Therefore, we urge you to continue to reach out to your Senators and request that they cosponsor the ALS Registry Act (S. 1382). Even if your Senators already have cosponsored the bill, there is more they can do to help. Sample letters that include our key messages to those who have cosponsored the bill and those who have not are available in the Advocacy Action Center.

As you reach out to Senators, we are particularly focused on the following key Senators who can help us take the next step in the Senate.

Arkansas: Senators Pryor & Lincoln
Colorado: Senator Allard
Delaware: Senator Carper
Georgia: Senator Chambliss
Illinois: Senator Obama
Kansas: Senator Roberts
Massachusetts: Senators Kennedy & Kerry
Michigan: Senator Levin
Missouri: Senator McCaskill
Nebraska: Senator Nelson
New Hampshire: Senator Gregg
Oklahoma: Senator Coburn
Tennessee: Senator Alexander
Utah: Senator Hatch
Wyoming: Senator Enzi
If you live if these state or know someone who does, please contact them today. Let’s get to 60!

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