Bruce Willis Spurs California Push for FTD Tracking
Emma Heming Willis is pushing California to track every frontotemporal dementia diagnosis after bruce willis was diagnosed with the disease. Senate Bill 1047 would require the state’s neurodegenerative disease registry to begin collecting those cases statewide.
She said, "When my husband, Bruce Willis, was diagnosed with frontotemporal dementia (FTD), our family was thrust into a world we were totally unprepared to navigate." Heming Willis also wrote that the doctor told the family to "check back in a couple of months," leaving them with "No plan of action, no treatment, and no hope."
Senate Bill 1047 in California
Senators Roger Niello and Ben Allen introduced the bipartisan proposal. If it advances, the California Neurodegenerative Disease Registry would add frontotemporal dementia to a list that already includes Alzheimer's, Parkinson's, multiple sclerosis, and amyotrophic lateral sclerosis.
California does not currently track frontotemporal dementia diagnoses, even though the disease is the most common early-onset dementia for people under the age of 60. Heming Willis argues that gap leaves researchers, clinicians, policymakers, and families without a clear picture of how often the disease appears in the state.
Bruce Willis and FTD timing
Three to seven years is the average time it takes to receive a frontotemporal dementia diagnosis, according to Heming Willis, and that lag can push families through years of confusion before they get an answer. She says people are often first misdiagnosed with depression, a midlife crisis, or just getting older.
Last year, New York passed a similar law creating the first frontotemporal dementia registry of its kind in the nation. California would be following that model, but with a registry broad enough to cover every reported diagnosis statewide rather than leaving the condition outside the system.
What comes after the bill
For families facing symptoms now, the practical question is whether the state will start counting cases in a way that can help identify patterns faster and strengthen the case for support. Heming Willis has already made her argument in public: if California tracks other neurodegenerative diseases, frontotemporal dementia should not stay invisible.
