Become an Advocate
As an ALS Northwest advocate, you can help change the laws and policies that affect thousands of persons with ALS and their families.
What is Advocacy and why is it important?
ALS Northwest is a leader in championing policies aimed at improving the quality of life for individuals living with ALS, as well as their families and caregivers. Our advocacy efforts are firmly grounded in the voices and needs of those affected by ALS, as we strive to support and improve their daily lives.
Our strength emanates from the active engagement of ALS patients and their families in the advocacy process, which has yielded significant achievements such as increased federal funding for ALS research, the successful passage of the Medicare waiver for ALS patients, the establishment of presumptive disability recognition by the Social Security Administration, and award of Service Connected Veteran’s benefits from the VA to Veterans of the armed forces who are diagnosed with ALS. Check out the original press release from this VA newsroom in 2008.
ALS Northwest collaborates with fellow ALS United Members, coalition partners, and passionate advocates to educate and activate members of Congress. Together, we champion a shared mission: to accelerate the discovery of ALS prevention strategies, treatments, and cures; to ensure access to compassionate, high-quality care and meaningful connection; and to advance policies that improve health outcomes for all those affected. Learn more about our Public Policy Priorities.
How You Can Help
Our advocates are passionate about encouraging government officials at all levels — state, local, and federal — to improve awareness and resources for people affected by ALS.
Advocates affect real change in the way that our government responds to the needs of the ALS community.
Sharing your connection to ALS in person, over the phone, in an email or even a letter can help educate and mobilize our elected officials to take action! Advocates with ALS Northwest help change the laws and policies that affect all people with ALS and their families every single year.
Choose the "Public Policy" interest using the email sign-up below to receive actionable advocacy alerts.
ALS Legislative Victories
Senator Elizabeth Dole 21st Century Veterans Healthcare and Benefits Act (2025)
Congress enacted this bipartisan legislation after President Biden signed it into law on January 2, 2025. The Act delivers critical enhancements across VA programs, especially for caregivers and veterans. It establishes a user-friendly digital resource center, expands VA Home-Based Community Services, streamlines disability claims, and strengthens mental health, job training, and homelessness assistance—benefiting more than 7.8 million military and veteran caregivers who save the nation over $15 billion annually.
ALS Northwest helped secure resources and support for ALS research and care through our advocacy efforts. Our important public policy initiatives at the federal, state, and local levels are aligned with the critical needs of people with ALS and their families and as part of our continued efforts to ensure access to FDA-approved treatments.
Learn more about the Senator Elizabeth Dole 21st Century Veterans Healthcare and Benefits Act.
ACT for ALS (2021)
A groundbreaking piece of legislation made possible by the tireless work of ALS advocates. Led by people living with ALS, caregivers, and researchers, this bipartisan effort pushed Congress to act on the urgent need for access to investigational treatments for a 100% fatal disease. ACT for ALS created an expanded access grant program that funds research and provides treatment access for those ineligible for clinical trials. It also launched a public-private partnership focused on accelerating ALS research through initiatives like AMP® ALS and ALL ALS.
ALS Disability Insurance Access Act (2019)
After years of tireless advocacy, the ALS community secured a major victory eliminating the outdated five-month waiting period for people with ALS to receive Social Security Disability Insurance (SSDI) benefits. This life-changing policy change was driven by advocates who refused to let Congress ignore the realities of living with ALS, a rapidly progressing, fatal disease where time is of the essence. The bill became Public Law No: 116-250 when it was signed into law on December 22, 2020.
Learn more about the ALS Disability Insurance Access Act:
Ongoing Policy Achievements
Veterans' Rights
We've championed the rights of veterans living with ALS, ensuring that ALS is recognized as a service-connected disease, granting veterans and their survivors access to VA health care and disability benefits. Veterans are twice as likely to develop ALS as the general population, regardless of branch of service.
Equipment Access
Working with regulatory agencies to tackle critical challenges faced by people living with ALS. We successfully collaborated with the Centers for Medicare & Medicaid Services (CMS) to ensure continued access to complex rehab technology wheelchairs and other essential equipment, providing the necessary support for maintaining quality of life.
Research Funding
Consistent advocacy for robust federal funding through the National Institutes of Health (NIH) and the Congressionally Directed Medical Research Program (CDMRP) has sustained critical ALS research programs that bring us closer to effective treatments and a cure.
ALS Northwest Impact in 2025
ALS Northwest, in conjunction with the members of ALS United, developed and deployed an advocacy survey with over 550 participants. The voices of those participants, people living with and impacted by ALS, played a crucial role in setting up ALS Northwest’s 2025 public policy agenda.
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.
Read the full letter and join us in advocating for these priorities!
Photo: Representatives from ALS Northwest and other ALS nonprofit organizations joined I AM ALS in Washington, D.C., for the ALS Community Summit and annual ALS flag display, where thousands of flags on the National Mall honored people with ALS. The hybrid in-person/virtual summit addressed important issues the ALS community faces.
The Latest in ALS Advocacy
ALS Northwest Partners with I AM ALS
ALS Northwest is partnering with I AM ALS on several federal funding priorities (I AM ALS website). We urge Congress to fully fund the Accelerating Access to Critical Therapies (ACT)…
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