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

Funding - Congress must substantially increase federal funding for ALS research to develop new treatments and work towards a cure and prevention. These funds should prioritize improving the lives of current ALS patients while pursuing long-term solutions.

States - New Jersey and New York

Increase Funding for Caregiver Support Programs

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We need your voice to help bring change and hope for people living with ALS.