State Policy & Advocacy

Congress Takes Action on ALS Priorities

Our goal is to make ALS a livable disease while we continue to search for new treatments and cures. In 2022, we began implementing the infrastructure for a hyper-targeted, nimble, and impactful state policy and advocacy program. Through collaboration with ALS advocates, staff, and The Association’s Public Policy Committee, we’ve established a unified state policy agenda that includes 12 policy priorities in alignment with our goals to 1) advance critical policies that help to find new treatments and cures, 2) optimize current treatments and care, and 3) prevent or delay the harms associated with ALS. 

State policymakers have the power to change the future of ALS by taking action on The ALS Association’s public policy priorities.

Our advocacy work focuses on educating and mobilizing the 7,383 state legislators holding office today, state regulators and executives, and building out an active ALS advocate network to drive change centered in the voices of those impacted by ALS. We advance policy in a nonpartisan manner to achieve our mission. 


New Tools & Resources

We have created the following tools and resources to aid ALS advocates, staff, and coalition partners in these efforts.

state profiles

State Profiles

State one-pagers with specific information about ALS, people living with ALS, and caregivers of people living with ALS in each state and D.C.

ALS Advocate Story Share

State Policy & Advocacy story-gathering & curation which will be used to influence lawmakers & regulators on state policy priorities.
group of ALS advocates visiting with their Member of Congress

State Policy Priorities

Slate of critical state policy issues that we will prioritize, resource, and drive through state advocacy to secure greatest impact for people living with ALS.
Guidance for Denials Beyond an Appeal
Insurance denials can be daunting. In addition to working with providers to file an appeal, there are other steps to secure access.
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