Washington, DC - Earlier today, the Senate Health, Education, Labor, and Pensions (HELP) Committee unanimously passed the ALS Registry Act (S. 1382) by a bipartisan voice vote! This is yet another victory for advocates across the country and comes just less than a month after the House of Representatives passed their version of the bill by a 411-3 vote. The bill is now cleared for consideration by the full Senate, nearly the final stage of the legislative process!

The Committee’s action is a testament to the effectiveness of our strategic outreach, as some Members of the Committee have previously blocked action on many other disease-specific health bills. In order to move the bill through the Committee as quickly as possible, the Advocacy Department launched a coordinated and focused campaign that included broad outreach to the entire Senate, such as the first-ever national “Call for a Cure.” Our goal was to obtain 60 cosponsors, a level of support that could not be ignored by the Committee. We are pleased to say that advocates had even more success, as 66 Senators had cosponsored the bill prior to today’s vote!

We targeted individual Committee Members, working with both grassroots and grasstops advocates to build support on the Committee and commitments from Members to vote for the ALS Registry Act. We worked behind the scenes with the bill sponsors, Harry Reid (D-NV) and John Warner (R-VA), as well as with the Committee staff and the staff of individual Senators to address specific concerns and secure bipartisan cooperation. And we also joined with Senators Reid and Warner to provide a “walk through” briefing specifically for each Committee Member’s staff. In the end, the combined efforts of the entire ALS community produced results this morning: unanimous bipartisan support to pass the bill and take one more step closer to enacting the ALS Registry Act!! (more…)

Washington, DC - The Advocacy Department is excited to let you know that on Tuesday, October 16, 2007, 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! (more…)

Washington, DC - We are extremely pleased to report that on July 19, 2007, 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 the 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. (more…)

WASHINGTON D.C. - U.S. Senator Pete Domenici met today with representatives of the New Mexico chapter of the ALS Association to discuss legislative issues relevant to awareness and treatment of ALS, which is commonly referred to as Lou Gehrig’s disease.

Renie Garciay Griego and David Meister, both of Albuquerque, met with Domenici in his Washington D.C. office. The issues they discussed included upcoming legislation pertaining to a national ALS registry, as well as DOD funding for further research concerning the disease.

ALS affects nerve cells and pathways in the brain and spinal cord and afflicts more than 5,600 people per year. The ALS Association advocates to increase public and private support of research concerning the disease, as well as health care reforms that respond to the demands that are imposed on those who have the disease.