New York Leads Nation with First FTD Research Registry

ALBANY, NY (October 20, 2025) — New York has become the first state in the nation to establish a research registry for Frontotemporal Degeneration (FTD), a little-understood form of dementia, after Governor Kathy Hochul signed legislation sponsored by Assemblywoman Amy Paulin and Senator Michelle Hinchey on October 20, 2025. The new law (Ch. 479 of 2025) aims to track FTD diagnoses, raise awareness, and advance research toward a cure.

The bill, unanimously passed by both legislative houses in 2025, creates the New York State Frontotemporal Degeneration Registry, directing hospitals and healthcare providers to report FTD cases to the State Department of Health. The department will develop an online portal to share data on FTD incidence, prevalence, and related epidemiological information, in consultation with doctors, caregivers, researchers, and public health experts.

“Frontotemporal Degeneration (FTD) is a debilitating disease and the most common form of dementia in people under 60,” said Assemblymember Amy Paulin, Chair of the Assembly Health Committee. “In order to find a cure for FTD, we must first understand it. I’m proud to have partnered with Senator Hinchey on this legislation, and I thank Governor Hochul for signing it into law so we can improve care and move closer to finding a cure.”

Senator Michelle Hinchey, whose father, former Hudson Valley Congressman Maurice Hinchey, battled FTD before his death in 2017, has been a leading advocate for FTD awareness since her election to the State Senate in 2020. She sponsored New York’s first resolution recognizing FTD Awareness Week and inspired similar resolutions in 25 other states, including Montana, Oklahoma, Tennessee, and West Virginia in 2025.

“New York is now the first state in the country to establish a Frontotemporal Degeneration (FTD) Research Registry—a law inspired by my father’s battle with FTD and in honor of every family who has faced the heartbreak of a diagnosis,” Hinchey said. “This is progress for a disease that can often feel hopeless, and New York’s law is lighting the way for other states and a national effort that will one day lead to a cure.”

FTD gained global attention in 2023 when actor Bruce Willis was diagnosed, with his wife, Emma Heming Willis, becoming a prominent advocate. “This registry makes New York the nation’s leader in fighting FTD,” Heming Willis said. “For the first time, doctors, researchers, and public health professionals will know how often FTD is diagnosed, information that’s essential in the race to find treatments and a cure.”

FTD, often misdiagnosed as psychiatric conditions, Alzheimer’s, or Parkinson’s, takes nearly four years to diagnose on average, delaying care and causing financial hardship for families. The cost of FTD is nearly double that of Alzheimer’s, as many patients and caregivers leave the workforce during their prime earning years. The new registry aims to address these challenges by improving data collection and awareness.

“The data collected under this bill will not only help with faster, more accurate diagnoses, but will also help quantify the burden of an FTD diagnosis on New York families—essential for making the case for increased public investment in caregiving and research resources,” said Meghan Buzby, Director of Advocacy and Volunteer Engagement for the Association for Frontotemporal Degeneration (AFTD).

For support, the AFTD Helpline is available at 1-866-507-7222 or info@theaftd.org. Resources include support groups, genetic counseling, research participation, and advocacy opportunities.

This article was drafted with the aid of Grok, an AI tool by xAI, under the direction and editing of Robert Cox to ensure accuracy and adherence to journalistic standards.