Take Action Today

ACT for ALS Reauthorization

ACT for ALS, passed in 2021, was a major breakthrough for expanded access and research momentum—and ALS families can’t afford to lose that progress. ALS United is preparing for reauthorization efforts in the 119th Congress and will post an action alert as soon as legislation is introduced. In the meantime, you can sign up for federal policy updates to be notified the moment action is needed.

ALS Better Care ACT

People living with ALS need timely access to coordinated, specialized care—but coverage rules and gaps can stand in the way. ALS United expects legislation to strengthen ALS care and coverage to be introduced in the 119th Congress and will share an action alert when it’s ready. Sign up for federal policy updates so you don’t miss them.

Expand ALS Research and Programs

ALS is relentless, and progress depends on sustained federal investment. Congress needs to protect and strengthen funding that powers ALS research, accelerates collaboration, and helps move discoveries into new treatments.

Support Family Caregivers

Caregiving is essential in ALS—but too often families absorb the cost alone while trying to keep working and stay afloat. Federal policy can do more to recognize the financial strain caregivers face and provide meaningful relief. Ask your Representative to support legislation that helps working family caregivers.

Expand Telehealth Access

For many people living with ALS, transportation to a clinic becomes harder over time—and telehealth can be the difference between care and no care. Congress should make telehealth access more reliable so families can connect with clinicians from home when travel is unsafe or unrealistic. Ask your Representatives to support legislation that protects and expands telehealth.

Ensure Justice for ALS Veterans

Veterans are diagnosed with ALS at higher rates, and families shouldn’t be punished by benefit rules that don’t reflect how quickly ALS progresses. Right now, some surviving spouses are unfairly denied full benefits because ALS often moves faster than arbitrary eligibility timelines. Ask Congress to fix this and ensure families receive the support they’ve earned.

Urge Your Representative to Join the ALS Caucus

Progress on ALS depends on committed champions in Congress who keep urgency front and center. The ALS Congressional Caucus helps focus lawmakers on practical policy solutions and sustained research investment for people living with ALS and their families. Ask your Representative to join the ALS Caucus, or if they are already in, thank them and encourage them to recruit a colleague.

Is your Member of Congress a member of the ALS Caucus? Find out here!