National Academies releases road map for turning ALS from fatal to livable

June 20, 2024- The National Academies have released a groundbreaking new report on amyotrophic lateral sclerosis (ALS). The report, the result of an 18-month study, provides a comprehensive guide aimed at making ALS a livable disease within a decade. The research was driven by ALS advocates and the ALS Association, including securing $1 million in Congressional funding for the study. At least 30,000 people in the U.S. are living with amyotrophic lateral sclerosis (ALS), a rapidly progressive, fatal neurological disease. For unknown reasons, veterans are more likely to develop ALS than non-veterans. 

The last National Academies study on ALS, done in 2006, focused on possible connections between ALS and military services. This study resulted in the Veteran’s Administration determination that ALS was a service-related disease in 2008. As such, veterans with ALS and their families are now eligible for an array of medical and social service benefits.

In 2022, Congress directed the National Institutes of Health to commission a National Academies committee to recommend key actions public, private, and nonprofit sectors should take to make ALS a livable disease in the next 10 years. These guidelines will inform policy decisions and drive strategic priorities, bringing hope and support to the ALS community.

The National Academies report will be further presented in detail at the ALS Association’s inaugural ALS Nexus conference held July 15-17 in Dallas, Texas. To register or for more information visit

Learn more about the report’s recommendations and their potential impact on the National Academies website.

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