Bruce Willis, Emma Heming Willis team up with a couple facing young-frontotemporal dementia to raise awareness

Bruce Willis’s 2023 diagnosis of frontotemporal dementia has helped bring attention to a disease that often goes misunderstood. Now, his wife, Emma Heming Willis, is partnering with a couple facing a young-onset form of the condition to broaden awareness and resources.

Sean Durbin, 58, of Mentor, Ohio, first noticed subtle changes in his speech and language last year when he was 57. His wife, Lisa Ihnat-Durbin, 50, urged him to seek medical evaluations, which led to a diagnosis of frontotemporal dementia confirmed by Cleveland Clinic neurologist Dr. Jagan Pillai. FTD is a group of brain disorders affecting the frontal and temporal lobes, impacting language, behavior and comprehension, and it often develops earlier than Alzheimer’s disease. To help friends and family understand, Sean and Lisa have begun explaining the diagnosis by referencing Bruce Willis’s case. Emma Heming Willis, after seeing the couple’s video, joined with them to raise awareness. Alongside the Cleveland Clinic, they are working to expand awareness, advocacy, and resources for families facing FTD.

FTD is a family of neurodegenerative diseases that disrupt language, behavior and executive function. It often strikes people in their 40s to 60s, sometimes long before memory-focused conditions such as Alzheimer’s disease. Because symptoms can be subtle at first, diagnosis can be delayed, affecting planning for care, finances, and support networks. The Durbins say that early identification gives families time to adjust and to access services, support groups and, where possible, clinical trials.

Willis’s public diagnosis in 2023 drew widespread media attention. A study published in Innovation in Aging by Dr. Pillai and colleagues found that broad coverage of Willis’s case significantly improved public understanding of FTD. Cleveland Clinic has since partnered with Sean, Lisa, and Emma to expand awareness and access to resources for younger families dealing with FTD. Emma Heming Willis has said that education helps people better support themselves and their loved ones, adding: “It was just easier to say, ‘It’s the same thing Bruce Willis has,’” in a video shared by the clinic. “When you educate yourself and understand the disease, you can better support yourself as well as your person.”

Doctors emphasize that there are no current treatments to stop FTD, but early diagnosis remains critical. Identifying the disease sooner gives families time to plan ahead, access support services, and consider participation in clinical trials. The emphasis on education and proactive planning is central to the effort led by Willis, Emma, and the Durbins, who say they want others facing the same diagnosis to have clearer guidance and more resources.

“We had our wedding anniversary and he just said, ‘You know, I think we’re stronger than ever together,’” Lisa said. “We’re aligned with the message of wanting to get the word out. I’m grateful every day that I have and every moment I have with Sean, and that hasn’t changed.”

For the Durbins, advocacy remains a central focus of their journey. Lisa described advocacy as a “huge part” of raising awareness for FTD, while Emma’s willingness to share her caregiving experience has helped normalize discussions around frontotemporal dementia and its impact on families. Through this collaboration, the aim is to connect younger patients and their families with timely diagnoses, supportive services, and opportunities to participate in research that could improve understanding and care in the years ahead. The partners say the goal is not only to inform the public but to create practical paths for access to resources as families navigate new realities together.