Copyright syracuse.com
A new law in New York will create a statewide registry that will help track and raise awareness of frontotemporal degeneration, one of the least understood forms of dementia. The legislation was sponsored by state Sen. Michelle Hinchey and Assemblymember Amy Paulin. Gov. Kathy Hochul signed it into law. The bill passed both houses of the state Legislature unanimously during the 2025 session. The law will establish a statewide system to track diagnoses of frontotemporal degeneration (FTD) in New York. Hospitals and health care providers will be directed to report cases to the state Health Department, which will then create a portal with data on the incidence and prevalence of FTD. Frontotemporal degeneration often takes nearly four years to diagnose, according to Hinchey’s office. Its symptoms are commonly mistaken for psychiatric conditions, Alzheimer’s disease or Parkinson’s disease. The lack of familiarity in the medical community delays care and can create financial hardships for families. FTD costs are often nearly double that of Alzheimer’s, as patients and caregivers often must leave the workforce during prime earning years, according to Hinchey’s office. The new registry will help raise awareness among doctors and the public, Hinchey’s office said. It will give New Yorkers tools to track FTD, improve care and strengthen support for families. “New York’s FTD Research Registry will help us understand the scale of the disease in New York and address the health care and knowledge gaps in our medical community that delay diagnosis and care,” Hinchey said in a news release. “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.”
