Association Leadership Takes Action on the Hill


Lobbying legislators about the critical needs of people living with ALS, their families and caregivers is one of the keys to making ALS a livable disease until we can cure it. Because Congress will determine how federal research dollars are distributed, ensuring the voices of the ALS community are heard is critical to securing funding to help fight ALS.

This month, Calaneet Balas, ALS Association President and CEO, and Scott Kaufman, Association Board Chair, joined several board members with ALS and some who have lost loved ones to the disease to meet with members of Congress  in House and Senate leadership positions and participate on appropriations committees that will decide how federal dollars are to be spent.

Face-to-face meetings with members of Congress and their staff are so important because they create a better understanding of the urgency to increase funding for ALS research.”
Paul Seifert
ALS advocate and person living with ALS

Congress recently approved a federal budget at the current levels – with no spending increases all while costs for research continue to go up. While level funding is very disappointing – there is even greater danger as the House is proposing cuts across the board for federal research.

"It’s so important for families impacted by ALS to make our voices heard,” said Bernie Zipprich, Association Board member and person living with ALS.

We're lucky that there's bipartisan interest in ending ALS, but translating interest into sustained action requires continual engagement with elected officials and their staffs. Therefore, it was great sharing with them the progress being made and discussing how more funding can help."

ALS leaders who worked the Hill that day spoke for everyone living with ALS and their families. A total of 35 meetings were held to fight for the critical funding needed to propel research further, faster, and support ALS care. Guided by our public policy priorities, key issues discussed included:

  • ALS RESEARCH PROGRAM (ALSRP) – DEPARTMENT OF DEFENSE (DOD): Increasing funding from $40 million to $80 million to support pre-clinical trials and research into novel therapies for ALS.  
  • ACT FOR ALS: Continuing full funding of $75 million for NIH’s Expanded Access program for people who are not eligible for clinical trial. In addition, providing $25 million for FDA research to speed the process for ALS drug review and approval – current funding stands at only $5 million.
  • NIH FOUNDATIONAL RESEARCH: Increasing funding for clinical trials at NIH to identify new treatments and cures that could win FDA approval. Current funding is only about $131 million.
  • ALS REGISTRY AND BIOREPOSITORY: Boosting funding from $10 million to $15 million with the additional $5 million earmarked for research into ALS in the military.
  • ALS BETTER CARE ACT (H.R. 5663/S. 3258): This bill would provide a supplemental $800 payment per clinic visit to help reduce wait times to get an appointment and cover the cost of services not reimbursed by Medicare.

We know that federal funding for ALS research and care must be expanded exponentially to provide new treatment options for people with ALS and improve access to the care they so desperately need. Please join us by visiting our Advocacy Center and use the Action Alerts to support these important asks.  

To learn more about how you can get involved and become an ALS advocate today, visit our website here.

To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at


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