Our Advocacy History
Decades of Progress for the ALS Community
For decades, ALS United's member organizations have been at the forefront of advocacy efforts that have transformed the landscape for people living with ALS, their families, and caregivers. Our members and advocates have driven policy changes that have saved lives, expanded access to care, and accelerated research toward treatments and cures.
Major 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. - 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After years of tireless advocacy, the ALS community secured a major victory eliminating the outdated five-month waiting period for people with ALS to receive Social Security Disability Insurance (SSDI) benefits.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.
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.
The Power of Grassroots Advocacy
Every victory on this page represents thousands of advocates who shared their stories, contacted their representatives, and refused to accept the status quo. From small local meetings to major congressional hearings, ALS United members have consistently demonstrated that advocacy works.
Our advocacy legacy proves that when the ALS community speaks with one voice, Congress listens.
Looking Forward
While we celebrate these historic achievements, our work continues. Each victory builds the foundation for the next breakthrough, and every advocate who joins our movement brings us closer to a world without ALS.
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