NY Gov. proposes $25M in state funding for ALS research

Gov. Kathy Hochul proposing $25 million for ALS research in budget
Hochul's mother died from the neurodegenerative disease in 2014
ALS, or Lou Gehrig's disease, causes loss of muscle control, is fatal

Updated: Jan 16, 2024 / 12:34 PM CST

FILE – New York Gov. Kathy Hochul speaks to reporters, June 7, 2023, in Albany, N.Y. (AP Photo/Hans Pennink, File)

(NewsNation) — New York Gov. Kathy Hochul on Tuesday proposed using money in the state’s FY 2025 budget to fund research into neurodegenerative disease amyotrophic lateral sclerosis, or ALS.

The $25 million Hochul is proposing would be one of the largest sums ever invested by a state into ALS research, The New York Times, which first reported the appropriation, wrote.

With this money, the governor, whose mother, Patricia Courtney, died from ALS in 2014, says she hopes to create a program to support endeavors such as drug development.

ALS, according to The Mayo Clinic, is a nervous system disease affecting the nerve cells in the brain and spinal cord that causes loss of muscle control. Called Lou Gehrig’s disease after a baseball player who had it, ALS begins with muscle twitching, weakness in an arm or leg, trouble swallowing or slurred speech. There is no cure for the fatal disease.

Hochul said in an interview with the New York Times that health care is one of her top priorities, with people who have rare diseases at the forefront of her mind.

During her State of the State Speech last week, Hochul vowed to “fund research into rare diseases like ALS, which robs millions, like my own Mother, of their vitality.”

Speaking about her mother’s experience at the State of the State was “obviously a very personal moment,” she told the New York Times.

“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.

Dr. Dan Doctoroff, who has ALS and works with a nonprofit organization dedicated to raising money for research, is working with Hochul. He says her program will provide care and early diagnosis for patients, and their data can be used to support research efforts across the state. Drug companies will also be given incentives to invest in developing drugs to treat ALS and for regional centers outside of urban areas.

“The ALS community, you feel like you’re brothers and sisters, just by having gone through it,” Doctoroff said to The Times. “We feel tied together in a way that is deeply emotional.”