Bill targets research on environmental factors and ALS
Proposed legislation would establish NIH research centers
Two U.S. representatives have introduced legislation that would establish a federally funded research program to study the link between environmental factors and amyotrophic lateral sclerosis (ALS) and other neurodegenerative diseases.
The Harmonizing Environmental Analyses and Launching Therapeutic Hubs to Yield Bolstered Research and Innovation in Neurological Science (Healthy Brains) Act would create centers under the National Institutes of Health (NIH) to study environmental and occupational risk factors for ALS and develop strategies to minimize risks.
The bill’s introduction “is an important step in the fight to stop ALS and other neurological diseases that destroy lives and families,” Calaneet Balas, president and CEO of the ALS Association, said in an association press release.
Reps. Jennifer Wexton, D-Va., and Gus Bilirakis, R-Fla., sponsored the bill. Wexton has progressive supranuclear palsy, a rare neurological movement disorder similar to Parkinson’s disease.
“Neurodegenerative diseases currently affect more than 50 million people worldwide, and as one of those people impacted, I understand firsthand how devastating these diseases are for them and their families,” said Wexton, who has described her disease as “Parkinson’s on steroids.”
First federal funding for environmental factors and ALS
“We know that research is the key to developing a better understanding of diseases and holds the promise for the development of more effective treatments and potential cures,” said Bilirakis.
Many neurodegenerative diseases, including ALS, have been linked to exposure to chemicals and pollutants. Despite these established connections, further research is needed to gain a more comprehensive understanding of the environmental hazards and their impact on developing these diseases at a population level.
The legislation, if approved, would mark the first time federal funds have been explicitly allocated to preventing these debilitating conditions and understanding the role of chemical exposure in the development of neurological diseases.
The bill would establish research centers to support basic, applied, and clinical research to study the role of environmental factors. The centers would undertake efforts such as launching a nationwide neurodegenerative diseases data system, providing stipends and training opportunities to scientists and health professionals, and disseminating information to the public.
“Through the Healthy Brains Act, we are investing in research that will hopefully help us better understand the underlying factors that contribute to neurodegenerative diseases such as ALS, Alzheimer’s, and Parkinson’s,” Bilirakis said.
Since her diagnosis last year, Wexton has been promoter of brain health. “The best way we can do better for [affected] families is by ensuring no other family has to go through what theirs, and mine, have,” she said in a statement announcing the bill’s introduction.
The ALS Association said it “has been a leading voice in the creation” of the bill and will continue to work with Wexton as the legislation advances.
Leaders of the American Academy of Neurology, the American Brain Coalition, the Michael J. Fox Foundation, CurePSP, and the Environmental Working Group are backing the bill, according to the sponsors.
Other supporting organizations include I am ALS, the American Parkinson Disease Association, the Lewy Body Dementia Association, the Multiple System Atrophy Coalition, and the PD Avengers.
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