Bruce Willis' wife joins lawmakers, advocates to support legislation

The wife of movie star Bruce Willis joined regional Senator Roger Niello (R-Fair Oaks) and many other advocates for victims of a debilitating neurodegenerative disease, to garner support for Niello's legislation that would expand help for these victims. The disease, frontotemporal degeneration (FTD), is a progressive brain disorder that affects area of the brain responsible for behavior, communication and movement. While awareness of the disease hasn't been as far reaching as dementia or Alzheimer's, Senator Niello is working to change that with Senate Bill 1047. The bill would expand the California Neurogenerative Disease Registry to include diagnoses of FTD. Advocates of victims of FTD along with a bipartisan group of California lawmakers joined at the state Capitol on Monday, August 3 calling for passage of the legislation. Niello explained 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. FTD became more widely known when celebrity Bruce Willis revealed that he had been diagnosed with the disease. Now, his wife Emma Heming Willis, is a strong advocate for helping to spread awareness of the devastating disease. "When Bruce was diagnosed with FTD in California in 2022, I was shocked to learn that his diagnosis wasn't captured in any public health record," said Heming Willis, FTD advocate and care partner to her husband. "If diagnoses aren't counted, we can't fully understand this disease, accelerate research, or move closer to better treatments and a cure. Our community deserves to be seen and recognized, and it's time for FTD to be included in California's neurodegenerative disease registry." The Association for Frontotemporal Degeneration (AFTD), one of the leading supporters of SB 1047, believes expanding California's registry to include FTD is an essential step to improving outcomes for people living with the disease. SB 1047 was introduced by joint authors Sen. Roger Niello (R–Fair Oaks) and Sen. Ben Allen (D–Santa Monica), and carried by Assembly member Jacqui Irwin (D–Thousand Oaks) in the Assembly, underscoring the bipartisan commitment to improving California's understanding of neurodegenerative diseases. "I am touched by the stories shared by advocates, patients, and family members whose loved ones are affected by FTD," said Senator Niello. "Patients and caregivers deserve to know that their FTD experience matters. Collecting data is the first step toward better research and hope for the future." "Sufficient care is not possible without sufficient data," said Senator Allen. "Too many families are being misdiagnosed, leaving them in the dark and without the appropriate treatment they need. Improving FTD research will connect families with more adequate care while helping discover better treatment options for current and future patients." Unlike Alzheimer's disease, FTD often strikes individuals during working adulthood, impacting careers, family responsibilities, and finances. The lack of systematic data collection has limited public awareness and delayed improvements in clinical care. The legislation has passed the Senate and is currently being considered by the Assembly Appropriations Committee. "Frontotemporal degeneration is a devastating disease that affects countless individuals and families, yet there is still so much we need to learn," said Assembly member Irwin. "California has the talent and research institutions to lead the way in developing new treatments and, ultimately, a cure. SB 1047 will help accelerate that critical work by investing in cutting-edge research and bringing hope to those impacted by FTD. I urge this Legislature to continue moving this important effort forward." SB 1047 is preceded by recent successful efforts in New York to drive FTD reporting infrastructure through legislation; last year, a bill championed by Sen. Michelle Hinchey (D–Kingston) and Assemblymember Amy Paulin (D–Scarsdale) created the nation's first-ever state-level FTD registry. California's proposed approach has practical similarities to New York's registry, but benefits from the state's existing unique neurodegenerative data collection framework. At present, California's Neurodegenerative Registry already collects diagnosis data on Alzheimer's disease, Parkinson's disease, multiple sclerosis (MS), and amyotrophic lateral sclerosis (ALS). "People affected by FTD want to be seen by their elected leaders and included in policies that shape healthcare and research," said Meghan Buzby, Director of Advocacy and Volunteer Engagement at AFTD. "This bill has the power to change that in California and maybe, as other states consider following California's leadership, the rest of the country." The bill also boasts support from an array of other neurodegenerative disease advocacy organizations. Because many neurodegenerative diseases have overlapping symptoms and, in some cases, shared underlying disease processes, expanding the data has greater potential to advance research, improve care, and better inform future public health efforts. Kelly McKenna, CEO at End Chronic Disease shared, "The best solutions start with better understanding. As more families are affected by neurodegenerative diseases, high-quality public health data helps us see the bigger picture—connecting the dots and revealing patterns that can better inform decisions about research, prevention, and care." McKenna continued, "By strengthening California's neurodegenerative disease registry, SB 1047 will provide researchers, clinicians, public health officials, and policymakers with stronger data to improve our understanding of these conditions and ultimately help improve outcomes for patients and families. End Chronic Disease is proud to support this bipartisan legislation."