California passes bill to expand tracking of frontotemporal degeneration

The California Legislature has approved SB 1047, a bipartisan measure that would add frontotemporal degeneration to the state’s neurodegenerative disease registry and extend the program through 2032. The bill now goes to Gov. Gavin Newsom, with supporters saying the data could improve diagnosis, care and research for a disease that is often misdiagnosed.

Why it matters: - California could become the first state to require statewide collection of frontotemporal degeneration data, closing a major gap in tracking a disease that is often missed or misdiagnosed. - More complete registry data could help public health officials identify who is affected, where they live, and whether care and diagnosis are reaching patients equitably. - Supporters say the measure could strengthen research into causes, treatments and prevention for one of the most common forms of dementia in people under 60.

What happened: - The California Legislature passed Senate Bill 1047, a bipartisan bill co-sponsored by End Chronic Disease. - The measure would require the California Department of Public Health to collect statewide information on the incidence and prevalence of frontotemporal degeneration, or FTD. - The bill now heads to Gov. Gavin Newsom for his signature. - SB 1047 was authored by Sen. Roger Niello, R-Fair Oaks, and Sen. Ben Allen, D-Santa Monica.

The details: - California has required the Department of Public Health to track neurodegenerative diseases since 2022. - The current registry includes ALS, Alzheimer’s disease, multiple sclerosis and Huntington’s disease. - SB 1047 would add FTD to that registry. - The bill would also allow the registry to include other neurodegenerative diseases. - The legislation would extend the registry program through Jan. 1, 2032. - FTD is a group of progressive brain disorders that can affect personality, behavior, language and movement. - FTD is the most common form of dementia among people under age 60. - Symptoms often overlap with other neurological and psychiatric conditions, which can lead to missed or incorrect diagnoses. - End Chronic Disease said better statewide data could help researchers and public health leaders ask better questions and direct resources more effectively. - Sen. Niello said the bill would be “a lifeline” for families and urged Newsom to sign it. - Earlier this month, Niello, Allen, Assemblymember Jacqui Irwin, the Association for Frontotemporal Degeneration, and FTD advocate and author Emma Heming Willis urged the Legislature to approve the measure.

Between the lines: - The bill reflects a broader push by families, advocates and clinicians to make a hard-to-track disease more visible in public health systems. - A registry alone will not solve FTD, but lawmakers and advocates are betting that better numbers will improve diagnosis pathways, surface disparities and shape future funding decisions. - The bipartisan backing suggests the issue has moved beyond a narrow advocacy campaign and into mainstream health policy.

What's next: - Gov. Newsom will decide whether to sign SB 1047 into law. - If signed, California would begin expanding its registry to include FTD and could use the data to support future research and public health planning. - End Chronic Disease said Sen. Niello and CEO Kelly McKenna are available for interviews.