Our Accomplishments

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.