ALS United Advocacy
Be a Force for Change in Washington and at Home
At ALS United, our advocacy actions drive policy change. We work with our member organizations across the country to push for the research, care, and support families need—then we make it easy for advocates like you to get involved in a way that fits your life.
Why ALS United
One national message, powered by local ALS organizations.
ALS United is built differently than most national organizations. Our agenda is shaped by local member organizations who work with people living with ALS and caregivers every day—so our priorities come straight from what families are experiencing in real time. That local presence means we bring authentic, community-based stories and relationships into federal advocacy—and help Congress understand what’s happening beyond Washington.
Interested in getting involved? Connecting with your local ALS United member organization is the easiest first step!
Our Advocacy Priorities
Our advocacy efforts are focused on three critical areas where federal policy can make the biggest difference for people living with ALS and their families:
- Expand Research & Trial Access: ALS moves fast—and research must move faster. We advocate for strong federal investment in ALS research and programs that speed discovery, support collaboration, and translate breakthroughs into real-world treatments. We also work to reduce barriers that keep people from participating in clinical trials or accessing promising investigational therapies.
- Enhance Financial Support Systems: ALS is financially devastating for many families, especially when caregiving becomes a full-time job. We advocate for stronger support for family caregivers and policies that recognize the real costs of care, time away from work, and lost income. We also prioritize issues affecting veterans and their families, including ensuring surviving spouses aren’t unfairly denied benefits because ALS progresses so quickly.
- Improve Healthcare Access & Coverage: People living with ALS need timely access to specialized, multidisciplinary care, and too many families face gaps in coverage, provider availability, and practical access to services. We work to strengthen access to ALS specialty care, protect and expand telehealth options, and improve coverage policies so families can get the right care without unnecessary delays and denials. We also support steps that make genetic counseling and related services easier to access for families who need them.
Based on comprehensive community input, our approach combines data-driven decision-making with collaborative advocacy, maintaining a flexible approach to engage on emerging legislation while supporting core federal and state initiatives.
Our Advocacy History
For decades, ALS United member organizations have been at the forefront of advocacy efforts that have transformed the landscape for people living with ALS, their families, and caregivers. Learn more about what our members and advocates have done to drive policy changes that have impacted lives, expanded access to care, and accelerated research toward treatments and cures.
