Gov. Kathy Hochul proposes $25 million in state funding for ALS research

Gov. Kathy Hochul will propose an appropriation Tuesday that would provide one of the largest amounts ever invested by a state in research into amyotrophic lateral sclerosis, the neurodegenerative disease known as ALS.

The appropriation, part of Ms. Hochul’s overall budget proposal, would direct $25 million to ALS research, creating a program that would support several efforts, including drug development. The governor said she hoped the program could also serve as a foundation for tackling other rare diseases.

Ms. Hochul’s mother, Patricia Courtney, died in 2014 from ALS, also known as Lou Gehrig’s disease. She never saw her daughter become a lieutenant governor or governor. But last week, as Ms. Hochul stood in the State Assembly and laid out her goals for the coming year in her State of the State address, she had her mother in mind when she announced her commitment to fund research into “rare diseases like ALS, who 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 talk about her family. “By talking about it at that location, people can understand that we are working on this in a way that we hope will produce a different outcome for them,” she said.

The governor said health care was one of her top priorities when she first took office and that people with rare diseases had remained at the forefront of her thoughts. So when Ms. Hochul was at an event and encountered Dan Doctoroff, a former deputy mayor of New York City who has been living with ALS as of 2021, she immediately invited him to work with her. Mr. Doctoroff’s nonprofit organization, Target ALS, is committed to raising money for ALS research.

“Being in the ALS community, you feel like you’re brothers and sisters just by having experienced it,” said Mr. Doctoroff, whose father, uncle and college roommate died of the disease. “We feel connected to each other in a way that is deeply emotional.”

He said the intent of Ms. Hochul’s program would be to provide care and early diagnosis to all ALS patients, whose data could then be used to support research efforts across the state. The money will also be used to provide pharmaceutical companies with incentives to invest in the development of drugs to treat ALS and to fund regional centers outside the New York City metro area to provide better care to patients outside urban locations.

Misdiagnoses and late ALS diagnoses are major problems, stealing time from people with a disease that typically becomes fatal within two to five years. According to the Target ALS websiteEarly symptoms include twitching or cramping in the arms, legs, shoulders, or tongue, weakness, slurred speech, and difficulty chewing.

Ms Hochul’s mother was misdiagnosed, delaying treatment and leaving the family in limbo. She died not long after her ALS diagnosis.

“I’m not saying it would have changed the outcome, but it certainly would have given us some knowledge about 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 New York was well positioned to advance ALS research because of the number of specialized centers in the state, such as his own and the New York City. York Genome Center, as well as nonprofits such as Target ALS.

“These kinds of efforts, I think, can only be supported with public money,” he said. “I think this money will be a real impetus for progress and change.”

Dr. Shneider added that ALS research has historically been underfunded, something Ms. Hochul also acknowledged. She called her proposal “trying to make up for lost time.” ALS research has made significant progress over the past five years, Mr. Doctoroff said, with an increase in academic studies, nonprofit involvement and federal government investment. In December 2021, President Biden signed the ALS Act, which invests $100 million annually for five years to provide research grants and accelerate the development of therapies. The missing piece in New York’s fight against ALS was state support.

“We are making progress in every respect,” Mr. Doctoroff said. “I think the field believes this is a treatable disease, that we can solve it. But it won’t happen overnight.”