Take Action Today

ACT for ALS Reauthorization

The ACT for ALS was signed into law in 2021 and was a major breakthrough for expanded access and research momentum. ALS families can’t afford to lose that progress. That progress is now at risk. The law expires September 30, 2026, and Congress must act to reauthorize it. Legislation was introduced in the House on April 6, 2026. ALS United is actively engaged with lawmakers on both sides of the aisle to push reauthorization forward. Take action now and tell your Representative to support ACT for ALS.

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. Multidisciplinary ALS clinics are the gold standard. Still, Medicare reimbursement hasn’t kept up, forcing many clinics to operate at a loss and limiting access for people living with ALS. This bill creates a targeted $800 supplemental payment per clinic visit to help sustain team-based, coordinated care and ensure families can get the support they need. Ask Congress to support this legislation.

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. Urge Congress to support our request for full funding for ALS Research.

Ensure Justice for ALS Veterans and their Families

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.

Support the Healthy Brains Act

The HEALTHY BRAINS Act aims at advancing research into environmental risk factors associated with ALS and other neurodegenerative diseases. Understanding what contributes to ALS is essential to developing prevention strategies, improving treatments, and ultimately finding a cure. By strengthening research in this area, Congress can help uncover critical insights that may change the trajectory of this disease. Ask your Representatives to support this legislation.

Support for ALS 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.

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!