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.

  • Eliminating the 2 year waiting period before people with ALS receive Medicare benefits due to disability
  • Increasing federal funding from $10 to $20 million at the Department of Defense ALS Research Program and from $83 million to $111 million at the National Institutes of Health between fiscal years 2018 to 2020 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
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.
Group of Advocates outside the U.S. House of Representatives

2020 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

  • Waive the Five-Month Waiting Period for Social Security Disability Insurance
  • Expand Access to Home Infusion for Medicare Beneficiaries
  • Fairly Compensate Families of Veterans with ALS
  • Preserve and Increase Federal Resources for ALS Research
  • Expand Access to Telehealth
  • Represent People Living with ALS on Access to Health Care, Drugs and Therapies

Learn More

Family outside an office of a Member of Congress

Write to Your Members of Congress

Tell Congressional Leaders: It’s Time For a Vote on SSDI Access

Now that more than half of the House and Senate have cosponsored the ALS Disability Insurance Access Act, we have a real shot at moving this critical legislation, but we need congressional leaders to act urgently in support of people living with ALS. Help us continue this momentum by contacting congressional leaders and urging them to schedule a vote and pass the ALS Disability Insurance Access Act now.

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