09/24/2025
When listens to Sean Durbin and his wife, Lisa, share their experience with frontotemporal dementia or FTD, she recognizes familiar moments—the quiet shifts, the hard conversations, and the strength it takes to turn a diagnosis into advocacy.
At 57 years old, Sean noticed subtle changes—difficulty finding words, moments of distraction—and brought them to Lisa’s attention. That conversation set them on a path of evaluations that ultimately led to a diagnosis of FTD by Cleveland Clinic neurologist Dr. Jagan Pillai.
FTD refers to a group of diseases that affect the brain’s frontal and temporal lobes. As these areas deteriorate, people lose the abilities those parts of the brain control including changes in mood, thinking, behavior, personality, judgment, and the ability to solve complex problems. The average age of onset disease is 58. While the cause behind every case of FTD isn’t clear, about 40% of cases involve a family history of the disease. And although there are currently no treatments available, an early diagnosis is still important. It allows patients and families to plan ahead, access support services, participate in clinical trials, and better understand the changes they’re seeing in their loved one.
For Lisa, caregiving became a new chapter. She leaned on their community and found that referencing Bruce Willis’s diagnosis helped others grasp what Sean was facing. “It was just easier to say, ‘It’s the same thing Bruce Willis has,’” Lisa says. “Then people could ask questions and start to understand.”
Emma reflects on how powerful it is to share these stories. Advocacy, she says, starts with awareness—and awareness begins with moments like this.
Through their journey, Sean and Lisa hope to help others find connection and understanding. The more we talk about FTD, the more power we give families to act early, find support, and advocate for change.
