Groups ask lawmakers to preserve National ALS Registry funding
HHS proposal would be 'direct blow' to community, association says
ALS groups are asking lawmakers to preserve federal funding for the National ALS Registry and National ALS Biorepository, the first and only comprehensive nationwide resource to collect and analyze data for better understanding amyotrophic lateral sclerosis (ALS).
“A recently leaked draft memo from the U.S. Department of Health and Human Services (HHS) proposes to eliminate federal funding for the Registry and Biorepository,” the ALS Association wrote in a blog post. “This would be a direct blow to the ALS community, to public health, and to scientific progress.”
The nonprofit and more than a dozen other ALS organizations across the country sent an open letter urging the ALS Caucus in Congress to restore and protect funding.
“We call on you, as members of the ALS Caucus, to take immediate and decisive action to restore and protect funding for the National ALS Registry and Biorepository,” the letter says. “We also urge you to communicate directly with HHS to reject any plan that would abandon this vital program and any others that threaten to halt research for ALS.”
Launched in 2010 at the Centers for Disease Control and Prevention (CDC), the National ALS Registry is designed to gather clinical data from patients to better understand what causes ALS and how common it is in the U.S. The National ALS Biorepository, part of the National ALS Registry, stores thousands of patient samples for use in research.
Registry seen important for veterans, researchers
“With $10 million in funding, the CDC’s National ALS Registry and Biorepository represent a tiny fraction of the federal budget — yet they deliver outsized impact, especially for our veterans, who are disproportionately affected by this devastating disease,” Melanie Lendnal, senior vice president of policy and advocacy at the ALS Association, said in the blog post.
ALS is a progressive disease that damages nerve cells in the brain and spinal cord, leading to muscle weakness and eventually paralysis. Veterans are at a higher risk of developing ALS, with studies showing a link between military service and the disease. Research is crucial to better identify people at risk and develop more effective treatment options.
With data shared voluntarily by more than 20,000 ALS patients living in the U.S. and biological samples donated by more than 1,500, the National ALS Registry has allowed researchers to track disease trends, identify possible environmental and genetic triggers, and connect patients to clinical trials, according to the association.
“Thanks to the ALS Registry, we’re closer than ever to understanding the environmental triggers of ALS,” Lendnal said. “This administration has a once-in-a-generation opportunity: to be the one that makes ALS history — saving lives and sparing families from heartbreak, while potentially saving billions in long-term health care costs. We hope HHS will reconsider any cuts to this vital program.”
Over the years, the National ALS Registry has collected answers from more than 110,000 surveys on risk factors, making it the most diverse data collection in terms of geography and demographics, according to the association. It has also collected more than 70,000 biological samples, including DNA, blood, urine, and cells that can be used to generate stem cells.
More than 120 peer-reviewed journal articles have used data from the National ALS Registry, helping understand how environmental pollutants and other risk factors contribute to ALS, and more than 65 clinical studies have been supported by the registry, the association said.
The association urged supporters to contact their members of Congress and ask them to sign the FY2026 ALS Research Appropriations Dear Colleague Letter, which calls for fully funding research into ALS, including the registry and biorepository.
About the Author
