Emma Heming Willis is making Bruce Willis the center of her message during World FTD Awareness Week, using a new tribute to explain why his frontotemporal dementia diagnosis continues to drive the advocacy work she has built around families facing the disease.
Emma shared a new photograph of the 71-year-old actor alongside a message describing him as the reason she continues pushing for greater awareness, research and support. “He is the driving force behind my advocacy,” she wrote, according to PEOPLE.
She also made clear that she sees the platform created by Bruce’s diagnosis as something she intends to keep using. Emma wrote that she would not let his diagnosis “be in vain” and said the doors his story has opened allow her to help people living with FTD and other dementias, as well as the people caring for them.
In March, Emma launched the Emma & Bruce Willis Fund for Dementia Research and Caregiver Support, turning several years of public advocacy into a grant-making effort focused on awareness, research and practical help for caregivers.
Bruce Remains the ‘Driving Force’ Behind Her Advocacy
Emma’s World FTD Awareness Week post featured Bruce sitting outdoors in a bucket hat and dark sunglasses. She described how his influence is continuing through the advocacy work that grew out of their family’s experience.
Entertainment Weekly reported that Emma said Bruce’s experience has helped her create space for families who often feel unseen after a dementia diagnosis. Her message emphasized both people living with the disease and the care partners whose own needs can disappear during long periods of caregiving.
She ended the tribute by bringing the attention back to Bruce. Emma wrote that he continues building on his legacy in this chapter of his life, called him a “f—ing legend” and said she remains proud to be his wife.
The Emma & Bruce Willis Fund Turned Advocacy Into a Formal Mission
Emma announced the Emma & Bruce Willis Fund for Dementia Research and Caregiver Support on March 12 while accepting the Susan Newhouse & Si Newhouse Award of Hope on behalf of herself and Bruce at the Association for Frontotemporal Degeneration’s Hope Rising Benefit in New York.
AFTD said the award recognized the impact Emma and Bruce have had on FTD visibility, education and advocacy since their family publicly disclosed his diagnosis. Emma used her acceptance remarks to thank the FTD community for supporting her family and then announced the new fund, with AFTD receiving its first gift.
The fund’s official site describes three core areas of work. It supports education and advocacy intended to deepen understanding of FTD and caregiving, funds promising early-stage research, and backs resources, practical tools and respite opportunities for caregivers.
She Wants Dementia Stories to Leave Room for Joy
Emma has also been pushing against the idea that public conversations about dementia should focus exclusively on decline. In a September interview on MS NOW’s Because We Care with Richard Lui, she said Bruce remains “very present” and that their family still shares moments of joy and connection.
The Independent reported that Emma specifically challenged what she called a negative narrative around dementia, arguing that families can acknowledge the difficulty of the disease without erasing the meaningful moments that continue alongside it.
Emma has repeatedly emphasized that caregivers require support of their own, while also asking audiences to continue seeing the individual living with dementia as a person with relationships, history and moments of connection rather than only as a patient.
World FTD Awareness Week Is Putting the Disease ‘in the Spotlight’
Bruce’s family first publicly revealed in spring 2022 that he had been diagnosed with aphasia and was stepping away from acting. On February 16, 2023, the family announced that his condition had progressed and that doctors had reached a more specific diagnosis of frontotemporal dementia.
In its original family statement, the Willises said communication difficulties were only one part of the disease Bruce was facing. The family also said receiving a clearer diagnosis brought some relief after the uncertainty surrounding his earlier symptoms.
The Association for Frontotemporal Degeneration describes FTD as an umbrella term for disorders affecting the frontal and temporal regions of the brain. Depending on the specific disorder, the most prominent early changes can involve behavior and personality, language and communication, or movement. AFTD notes that the presentation and progression can vary significantly from one person to another.
This year’s World FTD Awareness Week runs from September 28 through October 4 under the theme “Put a Spotlight on FTD.” The campaign calls attention not only to the disease itself but to people living with it, their families and care partners, and the continuing need for better diagnosis, support, research and treatment.