Emma Heming Willis

Once best known as a model and entrepreneur, today shes an advocate for patients and caretakers dealing with an incurable disease—one that hits very close to home. Here, she speaks with Katie Couric about her mission.

- Katie Couric

In the spring of 2022, the family of actor Bruce Willis announced that the Die Hard star had been diagnosed with aphasia, a disorder that affects how a person communicates—but that wasn’t the full story. The following year it was revealed that Willis’s specific diagnosis was frontotemporal dementia (FTD), making him one of an estimated 60,000 Americans living with the disease, which can impact language skills, behavior patterns, and movement. While there are no treatments and no cure for FTD, the diagnosis did inspire Emma Heming Willis, 46, Bruce’s model, writer, and entrepreneur wife, to not only share her family’s story but to take up advocacy to fight the disease. She has been open about the challenges FTD has presented her family and has become active in work to push forward legislation and research regarding the disease; next she’s writing a book about her experience.

Here, Willis speaks candidly about her husband’s diagnosis, its impact on her and their young daughters, and the ways in which speaking out for people living with FTD and those who help care for them has become a driving force in her life.

KATIE COURIC: When you’re a reporter, you’re told not to ask someone who’s going through something difficult, “How are you doing?” But it’s still an important question. So, how are you and your family doing?

EMMA HEMING WILLIS: Today I’m much better than I was when we first received the FTD diagnosis. I’m not saying it’s any easier, but I’ve had to get used to what’s happening so that I can be grounded in what is, so that I can support our children. I’m trying to find that balance between the grief and the sadness that I feel, which can just crack open at any given moment, and finding joy.