California Establishes FTD Registry to Combat Dementia

Sacramento, Calif., Sept. 30, 2026 /CourierPR/ -- California has taken a significant step in the fight against frontotemporal degeneration (FTD) by establishing a landmark registry. Governor Gavin Newsom signed Senate Bill 1047 into law, making California the latest state to require healthcare providers to report every FTD diagnosis to the California Department of Public Health. This new registry will document every diagnosis, providing a clearer picture of the disease's impact for researchers, policymakers, and healthcare professionals.

The initiative was spearheaded by The Association for Frontotemporal Degeneration (AFTD), a leading nonprofit organization dedicated to improving the quality of life for people affected by FTD and driving research toward a cure. AFTD worked alongside Senators Roger Niello (R, Fair Oaks) and Ben Allen (D, Santa Monica), and Assemblymember Jacqui Irwin (D, Thousand Oaks) to champion the bill. A broad coalition of neurodegenerative disease advocates from Alzheimer’s and ALS organizations also joined the effort.

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. However, 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.

Emma Heming Willis, wife of actor Bruce Willis, shared her motivation for advocating for this legislation.

The new registry builds on the first FTD registry established in New York, which was championed by Senator 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).

With no FDA-approved treatments currently available for FTD, the data needed to advance research is more critical than ever. California, home to one of the world’s leading biotechnology industries, holds exciting promise for people affected by FTD everywhere. The bill was 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.

This historic achievement for the FTD community is a testament to the determination of the disease's advocates and families to make sure FTD is no longer unseen and uncounted. The registry will provide researchers, clinicians, and policymakers with the data needed to understand the disease's impact, allocate resources, and improve pathways to care.