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.
“The A.L.S. community, you feel like you’re brothers and sisters, just by having gone through it,” said Mr. Doctoroff, whose father, uncle and college roommate died from the disease. “We feel tied together in a way that is deeply emotional.”
He said the intention of Ms. Hochul’s program would be to provide care and early diagnosis for all A.L.S. patients, whose data can then be used to support research efforts across the state. Money will also be used to give drug companies incentives to invest in developing drugs to treat A.L.S. and to fund regional centers outside the New York City metro area to provide better care to patients beyond urban locations.
Misdiagnosis and late A.L.S. diagnoses are major issues, stealing time from people with a disease that typically becomes fatal in an average of two to five years. According to the Target ALS website, early symptoms include muscle twitches or cramps in the arms, legs, shoulders or tongue, weakness, slurred speech and trouble chewing.
Ms. Hochul’s mother was misdiagnosed, which delayed treatment and kept the family in the dark. She died not long after her A.L.S. diagnosis.
“I’m not saying that would have altered the outcome, but it certainly would have given us some knowledge as to what she was actually going through,” Ms. Hochul said.
Dr. Neil A. Shneider, the director of the Eleanor and Lou Gehrig ALS Center at Columbia University, said that New York was well positioned to advance A.L.S. research because of the number of specialized centers in the state, such as his own and the New York Genome Center, as well as nonprofit groups like Target ALS.
“This kind of effort, I think, can only be supported by government funds,” he said. “I think this money will be a real impetus for progress and change.”
Dr. Shneider added that A.L.S. research has been historically underfunded, something Ms. Hochul also acknowledged. She referred to her proposal as “trying to make up for lost time.” A.L.S. research has made significant strides in the last five years, Mr. Doctoroff said, with an increase in academic studies, involvement of nonprofit groups and federal government investment. In December 2021, President Biden signed the ALS Act, which invests $100 million annually for five years to issue research grants and accelerate the development of therapies. The missing piece in New York’s fight against A.L.S. was state backing.
“In every way, we’re making progress,” Mr. Doctoroff said. “I think the field believes that this is a tractable disease, that we can solve it. But it’s not going to happen overnight.”