King of Prussia, Pa., Feb. 13, 2026 (GLOBE NEWSWIRE) -- Senators Roger Niello (R–Fair Oaks) and Ben Allen (D–Santa Monica) have jointly introduced legislation (Senate Bill 1047) in the California Senate that would require the California Neurodegenerative Disease Registry to begin collecting data on frontotemporal degeneration (FTD) diagnoses across the state.
FTD represents a group of progressive brain disorders that affect critical areas of the brain responsible for personality, behavior, language, and motor skills. FTD is often misdiagnosed or undetected due to its symptoms overlapping with those of other neurodegenerative diseases, as well as a historic lack of systematic data tracking. Current gaps in state-level reporting hinder efforts by researchers, clinicians, and policymakers to understand the disease’s impact, allocate resources, and improve pathways to care.
“Too many California families feel like they’re fighting this disease in the dark,” said Niello, lead author of the bill. “Expanding this registry is a chance to bring light into that darkness. It will help us gather the data we desperately need while giving a voice and hope to those enduring one of the most devastating diagnoses a family can face.”
The proposed measure would direct hospitals and healthcare providers throughout the state to report new FTD diagnoses to the California Department of Public Health, which would then integrate the information into the California Neurodegenerative Disease Registry. The registry makes its data available at the request of qualified researchers and public health professionals while protecting its confidential nature.
“Understanding who is being diagnosed, where, and under what circumstances changes everything about how a state can respond to FTD,” said Meghan Buzby, the Association for Frontotemporal Degeneration’s (AFTD’s) director of advocacy and volunteer engagement. “Good policy starts with good data, and we’re grateful to Sens. Niello and Allen for their leadership in helping ensure the FTD community is seen and counted.”
Unlike Alzheimer’s disease, FTD can more often strike individuals in midlife, interrupting lives—emotionally, physically, and financially—in their prime. Despite the disease’s devastation, the lack of systematic data collection has limited public awareness and delayed improvements in clinical care.
“As an FTD caregiver, I’ve experienced the heartbreak of searching for answers in a healthcare system that too often doesn’t see this disease,” said AFTD advocate Emma Heming Willis, wife of actor Bruce Willis, who was diagnosed with FTD in 2023. “By tracking FTD diagnoses, California will reveal the true scope of this illness, and the families living with it every day. This bill is about dignity and understanding, but it’s also about building real, lasting support through public health policy so no family facing FTD is overlooked.”
SB 1047 is preceded by recent successful efforts in New York to drive FTD reporting infrastructure through legislation; last year, a bill championed by Sen. Michelle Hinchey (D–Kingston) and Assemblymember Amy Paulin (D–Scarsdale) created the nation’s first-ever state-level FTD registry.
California’s proposed approach has practical similarities to New York’s registry, but benefits from the state’s existing, unique neurodegenerative data collection framework. At present, California’s Neurodegenerative Registry already collects diagnosis data on Alzheimer’s disease, Parkinson’s disease, multiple sclerosis, amyotrophic lateral sclerosis, and Huntington’s disease.
“The introduction of this bill marks a meaningful turning point for the FTD community in California,” said Susan Dickinson, AFTD’s Chief Executive Officer. “For too long, families affected by frontotemporal degeneration have waited to be fully recognized, and this legislation affirms that their experiences matter. California has the opportunity to ensure that every diagnosis strengthens our shared commitment to supporting individuals and families today, while advancing the long-term work of ending FTD.”
How State FTD Registries Differ from the FTD Disorders Registry
Despite sharing the word “registry,” the proposed California 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 diagnoses, 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
Meghan Buzby Association for Frontotemporal Degeneration 866-507-7222 mbuzby@theaftd.org
