Public Policy Priorities
Our advocacy work focuses on educating and mobilizing members of Congress, State Legislators, and the Federal and State government in a nonpartisan way to provide comprehensive support and advocacy for people with ALS and their families, while advancing research for new treatments and an end to ALS.
Oregon State Capitol Building, Salem
ALS Northwest is aggressively advocating for legislative priorities that make a difference for people with ALS.
We thrive on being collaborative and working with any and all stakeholders in the ALS community to improve the lives of people with ALS. Join our Public Policy interest group for calls to action and to get information on ALS Advocacy initiatives.
ALS Northwest is a member of ALS United. Based on comprehensive community input, ALS United has identified three critical priority areas for 2025: Expanded research and trial access; enhanced financial support systems; and improvement of healthcare access and coverage.
ALS Northwest Advocacy Priorities
Federal Funding Requests for FY2026
In March 2025, ALS Northwest joined 29 neurodegenerative organizations in urging Congress to sustain critical ALS research funding. Our joint letter requests increased investments in clinical trials, expanded access to treatments, and continued research into causes and prevention. Key asks include:
- $80M for ALS CDMRP at the Department of Defense.
- $100M for ACT for ALS, supporting NIH and FDA programs.
- $180M for ALS research at NIH to accelerate treatment breakthroughs.
- $15M for CDC research into ALS causes and prevention.
Ensure Justice for ALS Veterans
Message your member of Congress to sponsor the Justice for ALS Veterans Act of 2025 (H.R. 749/1685)
For unknown reasons, veterans are twice as likely to be diagnosed with ALS as the general population, regardless of branch of service. Under current VA policy, families only receive enhanced Dependency and Indemnity Compensation if the veteran lived with a fully debilitating condition for at least eight years. Since ALS progresses rapidly—often within 2 to 5 years—many families are unfairly excluded.
This bipartisan legislation, introduced by Senators Chris Coons (D-DE) and Lisa Murkowski (R-AK), would ensure that surviving spouses of veterans who died from ALS receive the full VA benefits they deserve.
TAKE ACTION: https://app.oneclickpolitics.com/campaign-page?cid=zJXpEZcBKqtrzFaEDc93&lang=en
Expand Telehealth Access
Sponsor the CONNECT for Health Act of 2025 (S.1261)
Telehealth is a lifeline for people living with ALS, offering safe, accessible care from home when mobility, breathing challenges, and fatigue make travel difficult. This legislation would make these vital services permanent by:
- Removing geographic restrictions and allowing the home to be an originating site
- Permanently authorizing health centers and rural health clinics to provide telehealth
- Expanding the types of healthcare professionals who can deliver telehealth services
- Eliminating in-person visit requirements for telemental health
- Allowing telehealth waivers during future public health emergencies
TAKE ACTION: https://app.oneclickpolitics.com/campaign-page?cid=37kZEfsmCFcPQDyvetD1r
Support Family Caregivers
Ask your member of Congress to sponsor the Credit for Caring Act 2025 (H.R. 2036/S.925)
This bipartisan bill would provide a new federal tax credit of up to $5,000 for working family caregivers. Led by Representatives Linda Sánchez (D-CA) and Mike Carey (R-OH), and Senators Shelley Moore Capito (R-WV) and Michael Bennet (D-CO), the bill recognizes the vital role caregivers play while juggling jobs and family responsibilities.
With over 11 million Americans providing unpaid care for individuals living with chronic illnesses, this credit would offer meaningful financial relief and help strengthen families and communities.
TAKE ACTION: https://app.oneclickpolitics.com/campaign-page?cid=vxJgQOf7B0xGU8NhvTyOl
Join the ALS Caucus in the House of Representatives and the Senate
The House and Senate ALS Caucuses are on a mission to bring together members of Congress from both sides of the aisle to share experiences, exchange ideas, and collaborate to find a cure for ALS. They do so by raising awareness about the challenges faced by ALS patients and their families, thinking creatively about policy solutions to reduce the negative impacts of ALS and investing in groundbreaking research.
Our advocacy efforts involve meeting with our Congressional delegation to educate them about ALS and its impact. Our goal is to have every member of Congress from the Northwest become a Member of the ALS Caucus in their respective body.
119th Oregon and SW Washington Congress members in the ALS Caucus:
- Sen. Jeff Merkley (D-OR)
- Rep. Suzanne Bonamici (D-OR)
- Sen. Maria Cantwell (D-WA)
Action steps coming soon.
Start Advocating Today
We need your voice to help bring change and hope for people living with ALS.