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 advocacy work focuses on educating and mobilizing all policymakers 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.


FDA Approves AMX0035!

If you took the Ice Bucket Challenge, you helped deliver AMX0035, the first newly developed treatment approved for ALS in years. AMX0035 slows progression of ALS and extends life for people living with ALS.

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Help ensure people living with ALS have access to new therapies.
Call on insurers to ban the use of discriminatory value assessments that could limit access to ALS drugs.
ALS Advocates outside the U.S. Capitol building

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

  • Speeded the discovery of new treatments for people living with ALS through more clinical trials and expanded access to investigational drugs by passing the ACT for ALS Act
  • Eliminated the 2-year waiting period before people living with ALS receive Medicare benefits due to disability.
  • Increased 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 new treatments and a cure for ALS.
  • Lead efforts to create and secure 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.
  • Implemented historic regulations at the Department of Veterans Affairs – designating ALS as a service-connected disease and ensuring that veterans living 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

Public Policy Priorities

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

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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 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.
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