ALS Legislative Priorities
At ALS United Greater New York, our advocacy is grounded in the real-life experiences of people living with ALS, their caregivers, and the professionals who support them. We work to ensure that elected officials from all political backgrounds hear and understand the community's urgent needs. In late 2024, we surveyed individuals impacted by ALS to shape our advocacy agenda, which centers on three priorities:
- expanding research and clinical trial access
- enhancing financial support systems
- and improving healthcare access and coverage
Guided by these priorities, we champion both state and federal policy solutions, staying responsive to new legislation and always focused on improving the quality of life for those affected by ALS.
ALS United Greater New York's core initiatives aim to create significant positive change for individuals affected by ALS and their caregivers by focusing our efforts on the following:
Expand Research Funding and Clinical Trial Access
Improve Healthcare Access and Coverage
Enhance Financial Support Systems
ALS organizations come together to advocate for FY26 funding priorities to Congress
Read the joint letter to Congress advocating for FY26 funding priorities here.
Federal Legislation & Funding
States - New Jersey and New York
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