New York is first state to establish registry for a misunderstood brain disorder

Marking a critical step forward in researching a long-misunderstood and misdiagnosed progressive brain disorder, a new law signed recently by Gov. Kathy Hochul will create a registry for frontotemporal degeneration (FTD) diagnoses in New York.

The registry is the first of its kind in the United States, and advocates are hopeful that it will lead to better understanding of the volume of diagnoses within the state. That, they hope, will provide an opportunity to rally for research funding and an eventual cure for the condition that affects the brain’s frontal and temporal lobes.

It is also a milestone in the struggle for critical understanding and awareness of the challenges faced by patients and their families, advocates say.

FTD is known to first surface with symptoms including progress