KING OF PRUSSIA, Pa., Oct. 20, 2025 (GLOBE NEWSWIRE) -- New York State Governor Kathy Hochul on Friday signed into law a bill creating the nation’s first state-level frontotemporal dementia (FTD) registry.  

The New York registry—championed by Sen. Michelle Hinchey and Asm. Amy Paulin in the legislature—will ensure more robust information on the rate of FTD diagnoses in the state. “For the first time we will have accurate data showing the impact of this disease on communities across the state, and a template for similar legislation in other states,” said AFTD Director of Advocacy and Volunteer Engagement Meghan Buzby. “We thank the many FTD advocates in New York who have supported Sen. Hinchey by urging their legislators to advance the bill to this point.” 

FTD is often misdiagnosed as a psychiatric condition or a different neurodegenerative condition like Alzheimer’s disease. A lack of focused data collection contributes to the lack of awareness by medical professionals and the public. The law requires healthcare providers in New York to report diagnoses of FTD to the state Department of Health, which will then publish the collected data in the registry; the public will have access to the data through a dedicated webpage by January 2027.  

The new law is the culmination of years of advocacy by AFTD, Emma Heming Willis—whose husband Bruce Willis was diagnosed with FTD—and hundreds of volunteers. But the driving force behind the law’s passage was New York state Sen. Michelle Hinchey, whose father, former New York state congressman Maurice Hinchey, was diagnosed with FTD and who passed in 2017. She has become a prominent and passionate advocate for families affected by FTD— sponsoring bills to further FTD awareness, supporting researchers studying the disease, and providing educational resources to people affected by FTD.  
 
In her inaugural year in office, she introduced a Senate resolution formally designating FTD Awareness Week, making New York the first state in the country to do so. This legislative initiative has evolved into an annual effort and has begun to inspire other states to designate their own FTD Awareness Weeks. She has also sponsored bills to support researchers studying the disease and to provide educational resources to people affected by FTD.

"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," said Sen. Hinchey. "New York’s FTD Research Registry will help us understand the scale of the disease in New York and address the healthcare and knowledge gaps in our medical community that delay diagnosis and care. 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. I am profoundly grateful to Governor Hochul for signing our bill, Assemblymember Amy Paulin for her partnership, and to the Association for Frontotemporal Degeneration, Emma Heming Willis, and all of the families who fought to make this possible."

How State FTD Registries Differ from the FTD Disorders Registry 

Despite sharing the word “registry,” the proposed New York FTD registry differs significantly from the existing FTD Disorders Registry. The former would require clinicians to report all new FTD diagnoses—an important first step to establishing FTD’s impact on the state. The FTD Disorders Registry, meanwhile, is global in scope, and relies on voluntary participation from persons diagnosed and their loved ones, thus ensuring their lived experiences are incorporated into FTD research. 

About AFTD: Online at theaftd.org, AFTD is the largest national nonprofit devoted to providing resources to help families affected by FTD today, and advancing research to foster accurate diagnosis, treatments, and a cure. Our volunteer-founded organization – driven by thousands of volunteers and donors – reflects a community's profound determination to #endFTD. 

SOURCE: The Association for Frontotemporal Degeneration

Attachments

• Sen. Hinchey Giving Address About Registry
• NY FTD Registry Bill Sponsor Sen. Hinchey alongside Emma Heming Willis and AFTD Staff and Volunteers

Meghan Buzby
Association for Frontotemporal Degeneration
4845908720
mbuzby@theaftd.org