ALS Advocacy

The ALS Association is at the forefront of public policy working to improve the lives of people living with ALS and their caregivers. Our federal advocacy work focuses on educating and mobilizing all members of Congress in a nonpartisan fashion to achieve the mission of The ALS Association: to discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.  

Advocacy
ALS Advocates outside the U.S. Capitol building

Through the active participation of people with ALS and the broader community, we have made some significant accomplishments together.

  • Ending the Social Security Disability Insurance 5-month waiting period for people living with ALS
  • Eliminating the 2 year waiting period before people with ALS receive Medicare benefits due to disability
  • Increasing federal funding from $20 to $40 million at the Department of Defense ALS Research Program and from $83 million to more than $100 million at the National Institutes of Health between fiscal years 2019 and 2021 for research to find treatments and a cure for ALS.
  • Leading efforts to create and securing funding for the National ALS Registry and Biorepository, a Centers for Disease Control and Prevention database of people with ALS and biological samples that helps scientists understand the disease and its causes
  • Implementing historic regulations at the Department of Veterans Affairs designating ALS as a service-connected disease, ensuring that veterans with ALS and their survivors have access to VA benefits, including health care and disability benefits
Group of Advocates outside the U.S. House of Representatives

2021 Public Policy Priorities

Our federal advocacy work focuses on educating and mobilizing all members of Congress in a nonpartisan fashion to achieve the mission of The ALS Association.

  • Accelerate Development, Approval and Access to Effective New Treatments
  • Increase Federal Funding for ALS Research
  • Permanently Extend Access to Telehealth for People Living with ALS
  • Provide High-Quality, Affordable, and Accessible Health Care
  • Increase Veterans Benefits for People with ALS and their Families

Learn More

National ALS Advocacy Conference
Every year, hundreds of ALS advocates from across the country come together to advance public policies that will benefit people living with ALS and their families.
Family outside an office of a Member of Congress

Write to Your Members of Congress

Ask Congress to Support New and Increased Funding for ALS Research

The ALS Association continues to aggressively pursue new and increased investments in ALS research. This year, we're continuing our efforts to preserve and increase funding at the DOD ALS Research Program, the CDC National ALS Registry and Biorepository, and the National Institutes of Health. We're also making two new requests for funding at the FDA and the National Academies. Together, these appropriations requests will bring us closer to discovering treatments, preventing new cases, and reducing the burdens for people with ALS by increasing the number of ALS clinical trials. Join our campaign to boost funding for ALS research by asking your member of Congress to add their name to the FY2022 ALS Appropriations Dear Colleague letter.

Contact your Representative

Ask Your Members of Congress to Join the ALS Caucus

The bipartisan Senate and House ALS caucuses bring together members of Congress from both sides of the aisle to raise awareness about the challenges faced by people with ALS and their families, advance policies that improve the lives of people with ALS, expand the network of support for those suffering with the disease, and advocate for investments in research to discover a cure. Send a letter to your members of Congress and ask them to join the ALS Caucus today.

Contact your Representative

Local Advocacy
If you want to learn what is happening at the state level for advocacy efforts, please reach out to your local chapter.
Print Friendly and PDF