California bill would expand tracking of neurodegenerative diseases

California lawmakers and advocates are pushing SB 1047, which would extend the state’s neurodegenerative disease registry through 2030 and add frontotemporal degeneration and other dementias. Supporters say better statewide data could improve diagnosis, research, care and prevention before final legislative votes.

Why it matters: - SB 1047 would give California a broader picture of neurodegenerative disease across the state. - Supporters say stronger registry data could help researchers, clinicians, public health officials and policymakers spot patterns, identify disparities and improve care. - The bill is especially focused on frontotemporal degeneration, a dementia that is often missed or misdiagnosed and commonly affects people under 60.

What happened: - End Chronic Disease is backing Senate Bill 1047 as final legislative votes approach. - California lawmakers, medical advocates and patient families are urging passage of the bipartisan bill. - The legislation would extend California’s neurodegenerative disease registry through 2030. - The bill would add frontotemporal degeneration and other dementias to the conditions the state formally tracks. - A press conference on the bill is set for Monday, Aug. 3, 2026, at 12 p.m. at the California State Capitol in Sacramento. - Senator Roger Niello, Sen. Ben Allen, Assemblymember Jacqui Irwin, Meghan Buzby of the Association for Frontotemporal Degeneration and Emma Heming Willis are listed as participants.

The details: - Since 2022, California has required the Department of Public Health to track ALS, Alzheimer’s disease, multiple sclerosis and Huntington’s disease through a statewide registry. - SB 1047 would build on that framework by expanding the registry’s scope and extending its authorization. - Frontotemporal degeneration is described as the most common form of dementia among people under age 60. - FTD affects personality, behavior, language and motor function. - Symptoms can overlap with other neurological and psychiatric conditions, which makes the disease harder to identify. - The lack of systematic statewide data on FTD has made it harder to determine how many Californians are affected. - The data gap has also made it harder to identify disparities, direct resources, improve pathways to care, accelerate research and understand prevention opportunities. - The press conference will also feature families affected by FTD sharing personal experiences. - Emma Heming Willis will discuss her family’s experience with FTD and the need for better data, resources and support. - Senator Roger Niello and Emma Heming Willis will be available for on-camera interviews after the press conference. - End Chronic Disease CEO Kelly McKenna will be available for Zoom interviews. - Media can arrange interviews by contacting Christina@endchronicdisease.org. - The event will be held in Room 112 at 1315 10th Street in Sacramento, California 95814.

Between the lines: - The push shows how patient advocates are trying to turn a public health registry into a tool for earlier recognition and faster research. - The inclusion of FTD suggests lawmakers are moving beyond the diseases California already tracks toward conditions that are harder to count and easier to miss. - McKenna said better public health data helps “see the bigger picture” and can better inform decisions about research, prevention and care. - McKenna also said SB 1047 would give decision-makers stronger data to improve outcomes for patients and families. - Bruce Willis’ diagnosis has helped draw national attention to FTD and the need for better awareness.

What's next: - Advocates will use the Aug. 3 press conference as a final push before remaining legislative votes. - If approved, SB 1047 would keep California’s registry in place through 2030 and expand the state’s tracking of dementia-related disease. - Supporters say the next phase would be using the data to improve research, diagnosis and care pathways.

The bottom line: - California is close to deciding whether to make its neurodegenerative disease registry broader, longer-lasting and more useful for FTD patients and families.