National Academies Releases Road Map for Turning ALS from Fatal to Livable

Groundbreaking New Report Stems from Advocacy Effort to Rally Government Support of Making ALS Livable

ARLINGTON, Va., June 18, 2024 /PRNewswire/ -- The ALS Association commends the National Academies for its groundbreaking new report on amyotrophic lateral sclerosis (ALS). The report, the result of an 18-month study, provides a comprehensive road map aimed at making ALS a livable disease within a decade. This significant milestone was driven by ALS advocates and the ALS Association, including securing $1 million in Congressional funding for the study.

"This new report is hugely important for the future of the fight against ALS," said Calaneet Balas, president and CEO of the ALS Association. "We still need to review and discuss each of the individual recommendations in the report, but taken as a whole, it's clear that there needs to be a significant investment in ALS research and an overhaul of how ALS care is delivered and paid for. Our community needs to unite around the best recommendations found in the report and push policymakers and payers to take immediate action on them."  

At any one time, 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. 

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 much-needed hope and support to the ALS community.

The ALS Association played a pivotal role in this initiative, contributing recommendations, participating in interviews and presentations, and providing expert insights throughout the study. The ALS Association's involvement ensured that the needs and voices of people living with ALS were central to the report's findings and recommendations.

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.

"Our goal is to make ALS a livable disease until we can cure it, and this report will serve as a vital road map to achieving that," said Balas. "We are committed to driving the most critical recommendations forward and ensuring that people living with ALS and their loved ones receive the care and support they need."

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 alsnexus.org

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

About the ALS Association
The ALS Association is the largest ALS organization in the world. The ALS Association funds global research collaborations, assists people with ALS and their families through its nationwide network of care and certified clinical care centers, and advocates for better public policies for people with ALS. The ALS Association is working to make ALS a livable disease while urgently searching for new treatments and a cure. For more information about the ALS Association, visit our website at www.als.org.

About ALS
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Over the course of the disease, people lose the ability to move, speak, and eventually, to breathe. On average, it takes about a year before a final ALS diagnosis is made. The disease is always fatal, usually within five years of diagnosis. There is currently no cure.

SOURCE The ALS Association