Emma Heming Willis spoke with journalist Katie Couric about her journey as an FTD care partner, as well as her advocacy for FTD legislation and research following the diagnosis of her husband, Bruce Willis, in an interview published in the November 2024 issue of “Town & Country.”

For her ongoing advocacy work, Mrs. Willis will be presented with the 2025 Susan Newhouse & Si Newhouse Award of Hope at AFTD’s Hope Rising Benefit next spring.

Along with the rest of her family, Mrs. Willis announced Bruce’s FTD diagnosis at theaftd.org in February 2023. She told Ms. Couric how deeply she values the support of Bruce’s entire family, including his adult children. “I’m so thankful that we are this blended family,” she said. “They’re very supportive, very loving, and very helpful, and a lot of people don’t have that.”

Since the announcement, Mrs. Willis has used her energy and her position to advocate for FTD families by sharing FTD information and connecting with others affected by the disease through social media, including her YouTube channel and Instagram page. “It’s a beautiful thing when you can be in a room with other care partners who have been on this journey and understand it,” she said. “Being able to connect more with social media, I wanted other people to know that they’re not alone.”

Mrs. Willis cited New York State Senator Michelle Hinchey as a source of inspiration as she advocates for quality FTD resources and care. Earlier this year, Sen. Hinchey — the daughter of U.S. Rep. Maurice Hinchey, who had primary progressive aphasia — introduced a bill to the New York legislature that would require healthcare providers there to report FTD diagnoses to the state Department of Health. Mrs. Willis, along with AFTD CEO Susan L-J Dickinson and other advocates, traveled to Albany to help Sen. Hinchey introduce the bill to the media. While the bill unanimously passed the state Senate in June, New York’s legislative session ended before the Assembly could vote on it.

“I’ve been following [Sen. Hinchey’s] lead in a lot of things,” Mrs. Willis said. “I didn’t know anything about this type of advocacy, so I’m starting at the ground, going to the state capital and raising my voice. … I’m going to do the best I can to raise awareness to get to a treatment or a cure.”

She also spoke with Ms. Couric about the book she is working on regarding her caregiving experience. “This book is about all the emotions that come with caregiving: the sadness, the grief, how traumatic it is, but also resentment and anger, and all these emotions that you’re not allowed to talk about,” she said. “It’s the book that I wish I had been handed when we got the FTD diagnosis.”

Mrs. Willis said she is dedicated to improving the lives of others affected by FTD. “It might not be the most beautiful story I could have thought of, but there are cracks of light,” she said. “There’s been an enormous amount of strength and a lot of beautiful things that have come from this diagnosis, and I’m trying to throw it back into the pot so other people can know that they will be okay over time.”