A bill establishing a registry of FTD diagnoses in New York State unanimously passed the state Senate on June 5.

Sponsored by Sen. Michelle Hinchey, Senate Bill 7874 requires healthcare providers in New York to report diagnoses of FTD to a registry run by the state Department of Health (DOH). The bill also establishes an advisory committee to help the DOH develop data-collection protocols and assist with the publication of an annual report on registry data.

However, New York’s 2023-2024 legislative session officially ended on June 6. And while the session ended up extending into the early-morning hours of June 8, it ended without the state Assembly voting on the registry bill. The Assembly counterpart to Sen. Hinchey’s bill was submitted to the chamber’s Health Committee in late April, and remained stalled there as the legislation session expired.

Nevertheless, FTD advocates say that the passage of Sen. Hinchey’s bill by the Senate is a victory worth celebrating. “This is a big step forward for New York’s efforts to create an FTD registry, which would ensure more accurate data on the rate of FTD diagnoses in the state,” 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.”

Sen. Hinchey introduced the bill to the press during a public event in Albany on May 15, accompanied by AFTD CEO Susan L-J Dickinson, Emma Heming Willis, and other FTD advocates.

New York’s legislature reconvenes in January. “FTD advocates in New York will keep up the pressure on lawmakers to continue to support this important legislation,” Buzby said. “We believe that the governor will have a bill on her desk at some point in 2025.”