


Gov. Kathy Hochul is set to propose an appropriation on Tuesday that would provide one of the largest sums ever invested by a state into research of amyotrophic lateral sclerosis, the neurodegenerative disease known as A.L.S.
The appropriation, part of Ms. Hochul’s overall budget proposal, would commit $25 million to A.L.S. research, creating a program that would support various endeavors, including drug development. The governor said she hoped the program could serve as an outline for tackling other rare diseases as well.
Ms. Hochul’s mother, Patricia Courtney, died from A.L.S., also known as Lou Gehrig’s disease, in 2014. She never saw her daughter become lieutenant governor or governor. But last week, as Ms. Hochul stood in the State Assembly and outlined her goals for the coming year in her State of the State address, she had her mother in mind as she announced her commitment to funding research into “rare diseases like A.L.S., that rob millions, like my own mother, of their vitality.”
In an interview, Ms. Hochul said that “it was obviously a very personal moment for me,” adding that she was usually reluctant to speak about her family. “Talking about it in that venue allows people to understand that we’re working on this in a way that we hope will bring a different outcome for them,” she said.
The governor said that health care had been one of her top priorities when she first assumed office and that people who have rare diseases had remained at the forefront of her mind. So when Ms. Hochul was at an event and ran into Dan Doctoroff, a former New York City deputy mayor who has lived with A.L.S. since 2021, she immediately invited him to work with her. Mr. Doctoroff’s nonprofit organization, Target ALS, is dedicated to raising money for A.L.S. research.