New York Establishes Statewide ALS Registry: A Landmark Victory for the ALS Community 

In early spring, ALS United Greater New York partnered with Assemblyman Steve Stern and Senator Jessica Scarcella-Spanton to introduce the ALS Registry Legislation (A7845/S6413), a groundbreaking bill designating ALS as a reportable disease in New York State. 

Throughout the spring, ALS advocates across the state wrote to their legislators, and ALS United led meetings in Albany to urge the bill’s passage. Thanks to this powerful advocacy, the legislation passed both chambers before the end of the session, and earlier this month, Governor Kathy Hochul signed it into law, continuing her strong commitment to the ALS community, following her allocation of $25 million in the state budget for ALS research in the spring of 2024. 

“Currently, ALS case reporting in the United States is voluntary, relying on self-enrollment in the National ALS Registry managed by the CDC,” said Assemblyman Steve Stern, prime sponsor of the legislation. “Unfortunately, many people with ALS never register, which leaves researchers with an incomplete picture of the disease. My legislation will enable New York State to conduct true population-based studies in ALS, helping scientists and public health officials identify disease-modifying interventions that are truly scalable.” 

Senator Jessica Scarcella-Spanton added: “Establishing a statewide ALS registry will allow us to collect accurate and reliable data that will enhance the delivery of vital services to individuals living with ALS and ultimately help researchers advance toward a cure.” 

With this new law, New York has become one of only a few states in the nation to take this critical step forward in ALS research. This action is especially important because the existing CDC National ALS Registry relies on self-reported information, meaning many cases are missed, and crucial data go uncollected. Earlier this year, reports indicated that the CDC could eliminate the federal registry, making New York’s leadership even more vital to preserving accurate, comprehensive ALS data. 

“This legislation represents a monumental step forward for New Yorkers living with ALS,” said Kristen Cocoman, President and CEO of ALS United Greater New York. “We are deeply grateful to the bill’s sponsors, the tireless advocates who made their voices heard, and Governor Hochul for signing this into law. By creating a statewide registry, we can finally ensure that researchers, clinicians, and policymakers have the data they need to drive meaningful progress—improving care today and advancing us toward a future without ALS.” 

Similar legislation in New Jersey passed the Assembly last year and has been making its way through the Senate process. It awaits a vote in the full Senate and passage by Governor Murphy before he leaves office.  

Both bills mark a major victory for the ALS community, one that could strengthen research, improve patient care, and bring us closer to a world without ALS