Relates to establishing a state amyotrophic lateral sclerosis (ALS) and motor neuron disease (MND) registry
Introduced
Moved
Reached a final decision
Became law
Derived from the official record below.
Officially: “Relates to establishing a state amyotrophic lateral sclerosis (ALS) and motor neuron disease (MND) registry” Read the full text
Assembly
What it does
Requires the department of health to establish a registry for the collection of information on the incidence and prevalence of amyotrophic lateral sclerosis (ALS) and motor neuron disease (MND) in the state; requires that every physician, nurse practitioner, physician assistant and general hospital that diagnoses or treats a patient diagnosed with ALS or MND give notice to the department of cases of ALS or MND coming under their care; requires that patients diagnosed with ALS or MND be provided with written and verbal notice regarding the collection of information and patient data on ALS and MND and provides a method for patients to opt out of the collection of data; provides for duties of the department and the commissioner of health in relation thereto.
Summary from the sponsor's memo in the official legislative record, shown verbatim. Not legal advice.
Where it is
Show all 16 actions
REFERRED TO HEALTH · Apr 11, 2025
Assembly
REPORTED REFERRED TO CODES · May 19, 2025
Assembly
REPORTED REFERRED TO WAYS AND MEANS · May 28, 2025
Assembly
REPORTED REFERRED TO RULES · May 29, 2025
Assembly
REPORTED · Jun 6, 2025
Assembly
RULES REPORT CAL.455 · Jun 6, 2025
Assembly
ORDERED TO THIRD READING RULES CAL.455 · Jun 6, 2025
Assembly
PASSED ASSEMBLY · Jun 6, 2025
Assembly
DELIVERED TO SENATE · Jun 6, 2025
Assembly
REFERRED TO RULES · Jun 6, 2025
Senate
SUBSTITUTED FOR S6413 · Jun 10, 2025
Senate
3RD READING CAL.1540 · Jun 10, 2025
Senate
PASSED SENATE · Jun 10, 2025
Senate
RETURNED TO ASSEMBLY · Jun 10, 2025
Senate
DELIVERED TO GOVERNOR · Oct 9, 2025
Assembly
SIGNED CHAP.478 · Oct 17, 2025
Assembly
The numbers
7
sponsors on the bill
Sponsors
Steve SternRebecca SeawrightMaryJane ShimskyHarvey EpsteinNader SayeghMicah LasherSteven Otis
Recorded votes
Recorded voteSenate · 2025-06-10 · EXC 5, AYE 58
Roll-call results shown verbatim from the New York legislature’s records. A result reflects that roll call’s own motion, not the bill’s overall outcome.
Who is lobbying on this
ALS United Greater New York, Inc.via THE PARKSIDE GROUP LLC
8 filingsHEALTHCARE ASSOCIATION OF NEW YORK STATE, INC.via HEALTHCARE ASSOCIATION OF NEW YORK STATE, INC.
1 filingFrom 9 filings in New York State lobbying disclosures (COELIG), via data.ny.gov, naming this bill (2025 to 2026). Filings are self-reported by lobbying firms and show who is paid to influence this bill. They do not say which side, or whether it worked.
Nothing on this page shows why any vote was cast. Recorded votes and lobbying filings are separate official records, self-reported by different parties, and neither explains the other.
Every fact on this page links to its source, starting with the official bill record. Last action: Signed by Governor (Oct 17, 2025).