New York State Senator Michelle Hinchey introduced and sponsored a bill to the state Senate that, if approved, would create a statewide registry of FTD diagnoses. Sen. Hinchey announced the bill on May 15 at the state capitol building in Albany, joined by AFTD CEO Susan L-J Dickinson, Emma Heming Willis, and AFTD volunteers, advocates, and staff.

Senate Bill 7874 would require healthcare providers in New York to report diagnoses of FTD to the state Department of Health, which would then publish the collected data in the registry; the public will have access to the data through a dedicated webpage. The bill also directs the Department of Health to create an FTD registry advisory committee, and requires yearly reports to keep legislators and the governor apprised of the state of FTD and other dementias across New York.

As the bill highlights, FTD affects many Americans but is still too little known nationwide; because of this, 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.

“Accurate data on the prevalence and incidence of FTD is lacking,” said AFTD Director of Advocacy and Volunteer Engagement Meghan Buzby, MBA. “If passed, Senator Hinchey’s bill to create the first and only state registry for FTD and related dementia would be a huge step forward in determining the impact of this disease on communities across the state and provide a template for similar legislation in other states.”

The bill is only the latest FTD-focused legislation introduced by Sen. Hinchey. Since the FTD journey of her father, former congressman Maurice Hinchey, who passed in 2017, she has become a prominent and passionate advocate for families affected by FTD. In addition to bills to further FTD awareness and support researchers studying the disease, Sen. Hinchey has introduced legislation to provide educational resources to people affected by FTD.

AFTD staff and volunteers met with Sen. Hinchey last year during a legislative session where she addressed fellow legislators about the state’s September 24 – October 1 FTD awareness week. For World FTD Awareness Week 2023, Hinchey joined Emma Heming Willis on her YouTube channel to discuss educating friends, neighbors, and health providers about FTD’s unique symptoms and challenges.