Help change laws and policies
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.
Public Policy Priorities
Our advocacy work focuses on educating and mobilizing policymakers in a nonpartisan fashion to achieve the mission of The ALS Association.
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.
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