US Senate ALS Caucus to advocate for policies, research

New members added to pursue bipartisan solutions that advance ALS care

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by Mary Chapman |

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The bipartisan Senate ALS Caucus has been reestablished to heighten awareness of the needs of those living with amyotrophic lateral sclerosis (ALS), advance policies, improve patient support, and advocate for research investments.

U.S. Sens. Chris Coons, D-Delaware, and Mike Braun, R-Indiana, reintroduced the caucus, which is now expanded with three new members: Raphael Warnock, D-Georgia, Jeff Merkley, D-Oregon, and Amy Klobuchar D-Minnesota.

“The bipartisan Senate ALS Caucus is committed to bringing special awareness to the work needed to end this disease that has caused so much anguish for countless Americans and their families,” Coons, co-chair of the Senate ALS Caucus, said in a press release.

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“I’m glad to announce that three new members have joined the Senate ALS Caucus in demonstration of the growing bipartisan effort to support research, explore new treatment options, and find a cure for ALS. I look forward to more progress in the months and years ahead,” Coons added.

“I’m happy to join Senator Coons in announcing three new members to the bipartisan Senate ALS Caucus,” said Braun, the other caucus co-chair. “I look forward to working with members new and old to find real solutions in aiding individuals suffering with ALS.”

The mission of the caucus is to:

  • increase awareness of challenges faced by those with ALS and their families
  • establish and advance laws and policies that improve patients’ life quality
  • enhance patients’ support networks
  • advocate for research investments that will improve the understanding of the causes of ALS, identify better treatments, and ultimately find a cure.

“The ALS Association urges our elected officials to address the needs of people living with ALS and their loved ones. We thank the legislative champions on the Senate ALS Caucus who empower people living with ALS to live their lives to the fullest,” said Melanie Lendnal, the ALS Association’s senior vice president of advocacy.

“Working together with senators on the ALS Caucus, we will find new policy solutions to make ALS a livable disease,” Lendnal said.

Brian Wallach, cofounder of the nonprofit organization I AM ALS, said that due to past caucus efforts, 90% of ALS patients who don’t qualify for clinical trials have access to safe, promising treatments.

“This caucus has been an intricate part of the bipartisan efforts to strengthen the health care system and research efforts for people living with ALS,” Wallach said.

‘Amazing progress’

“With their relentless leadership and the important work by the caucus, we are beginning to see amazing progress and ALS is no longer hopeless. Since the formation of the caucus, it has taken a disease that was often an afterthought and made it a priority to turn this 100% fatal disease into a chronic one,” he added.

“In particular, the caucus has led the effort to increase research funding, passed a bill to eliminate the five-month waiting period for Social Security disability benefits, and passed the historic ACT for ALS. …We are now incredibly hopeful about the future because of the efforts of this caucus,” Wallach said.

Other caucus members include Richard Blumenthal, D-Connecticut; John Boozman, R-Arkansas; Tom Cotton, R-Arkansas; Dick Durbin, D-Illinois; Angus King, I-Maine; Lisa Murkowski, R-Alaska; Jeanne Shaheen, D-New Hampshire; Kyrsten Sinema, I-Arizona; John Thune, R-South Dakota; Sheldon Whitehouse, D-Rhode Island; Michael Bennet, D-Colorado; Dianne Feinstein, D-California; Elizabeth Warren, D-Massachusetts; Maria Cantwell,  D-Washington; Ed Markey, D-Massachusetts; Jacky Rosen, D-Nevada; Debbie Stabenow, D-Michigan; and Chris Van Hollen, D-Maryland.