For First Time CA Will Document Every Frontotemporal Dementia Diagnosis, A Critical New Tool in Fight Against Young-Onset Dementia
SB 1047 Press Conference
AFTD Advocates with Senator Niello
Sacramento, Calif., Sept. 30, 2026 (GLOBE NEWSWIRE) — A powerful collective effort by frontotemporal degeneration (FTD) advocates and families has culminated in a historic victory: Governor Gavin Newsom has signed Senate Bill 1047 into law, establishing a new FTD registry that will document every diagnosis in the nation’s most populous state.
The landmark law adds FTD to California’s Neurodegenerative Disease Registry and requires healthcare providers to report every FTD diagnosis to the California Department of Public Health, creating a clearer picture of the disease’s impact for researchers, policymakers, and healthcare professionals.
Driven by The Association for Frontotemporal Degeneration (AFTD), SB 1047 is a bi-partisan bill authored and championed by Senators Roger Niello (R–Fair Oaks) and Ben Allen (D–Santa Monica), and carried in the State Assembly by Asm. Jacqui Irwin (D–Thousand Oaks). A broad and committed coalition of neurodegenerative disease advocates from Alzheimer’s and ALS organizations joined the AFTD in this important effort.
California’s new registry builds on New York, which established the first FTD registry in America, driven by Senator Michelle Hinchey.
“SB 1047 was made possible by the determination of the FTD community to make sure this disease could no longer go unseen and uncounted,” says Sen. Roger Niello. “They brought their experiences, their urgency, and their vision to the Capitol, and they never stopped making the case for change. California is stronger when we listen to the people who know these challenges firsthand.”
FTD is the most common form of dementia for people under age 60, affecting areas of the brain responsible for behavior, communication, and movement; unlike Alzheimer’s disease, memory is usually preserved. FTD is often misdiagnosed or undetected due to its symptoms overlapping with those of other neurodegenerative diseases and psychiatric disorders, 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.
Emma Heming Willis, wife of actor Bruce Willis, shared what drove her to advocate for this legislation. “It was really a shock to learn that FTD diagnoses weren’t being recorded in California. When someone you love is diagnosed with a disease like FTD, you don’t want that diagnosis to disappear, you want it to contribute to a treatment or cure. I’m so grateful to the Legislature and Governor for adding FTD to California’s registry, because it means our loved ones are seen and counted. Diagnostic data is so important, and this registry gives researchers, doctors, and pharmaceutical companies a strong new tool in the fight against FTD.”
With no FDA-approved treatments currently available for FTD, the data needed to advance research is more critical than ever—and in California, home to one of the world’s leading biotechnology industries, SB 1047’s success holds exciting promise for people affected by FTD everywhere.
The bill was also an exercise in full bipartisan cooperation, with joint authors from both sides of the aisle, and unanimous passage in both the Senate and the Assembly.
“FTD, and dementia more broadly, touches people and families from every community and every political background. We all have a stake in finding better ways to understand, diagnose, support, and ultimately prevent these diseases,” says Meghan Buzby, Director of Advocacy and Volunteer Engagement at the Association for Frontotemporal Degeneration (AFTD). “SB 1047’s success will benefit not only families living with FTD, but all of us as we work toward a future free of FTD and other forms of dementia.”
New York was first in the nation to mandate a state-level FTD registry just last year, championed by Sen. Michelle Hinchey (D–Kingston) and supported by AFTD. After SB 1047 is implemented, FTD diagnoses made in California will be collected alongside diagnostic data for Alzheimer’s disease, Parkinson’s disease, multiple sclerosis (MS), and amyotrophic lateral sclerosis (ALS).
“This is a historic achievement for the FTD community,” says AFTD CEO Rachel Biblow. “To the California advocates who shared their stories and worked tirelessly to make this registry a reality, thank you. Your voices and continued partnership made a difference, and we look forward to amplifying this achievement as we ask other states take this important step.”
About AFTD
AFTD is the leading nonprofit organization dedicated to improving the quality of life of people affected by frontotemporal degeneration (FTD) and driving research toward a cure. AFTD advances research, raises awareness, educates healthcare professionals, provides support for individuals and families, and advocates for public policies that promote earlier diagnosis, better care, and increased research funding.
Attachments
- SB 1047 Press Conference
- AFTD Advocates with Senator Niello
CONTACT: Meghan Buzby Association for Frontotemporal Degeneration 484-590-8720 [email protected]
