While accepting an award at the Hope Rising Benefit in NYC on March 12, Emma Heming Willis announced the launch of the Emma & Bruce Willis Fund
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The first grant will support the Association for Frontotemporal Degeneration (AFTD), a leader in research, education and family support for those affected by FTD
Willis was diagnosed with the heartbreaking disease in late 2022 at age 67
Emma Heming Willis iscontinuing to advocate for dementia patientsand families navigating neurodegenerative disease.
While accepting the Susan Newhouse & Si Newhouse Award of Hope atThe Association for Frontotemporal Degeneration's Hope Rising Benefit in New York on Thursday, March 12, the author, 47, announced the launch of theEmma & Bruce Willis Fundfor Dementia Research and Caregiver Support.
The philanthropic fund — which is housed at theEntertainment Industry Foundation— is "dedicated to advancing understanding of frontotemporal dementia (FTD) by raising awareness, supporting promising scientific research and strengthening support for caregivers," according to a press release.
At the event, Heming Willis accepted the award on behalf of both herself and her husband, who was diagnosed with the heartbreaking disease in late 2022 at age 67.
"This journey has opened my eyes to the realities so many families face when a loved one is living with frontotemporal dementia," says Heming Willis. "I believe deeply in the importance of supporting research while also showing up for the caregivers who carry so much every day.
"Through this fund, my hope is to help deepen understanding of FTD and ensure families facing it feel seen, supported, and less alone. Bruce has always led with generosity and heart, and I know he would be proud to see this effort helping families facing this disease."
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TheDie Hardstar's family— including Emma, daughters Mabel and Evelyn, along with theactor's ex-wife Demi Mooreand daughters Rumer, Scout and Tallulah — first sharedhis aphasia diagnosisin March 2022. Then in February 2023, Heming Willis confirmed he had received a morespecific diagnosis of FTD.
Frontotemporal dementia is an all-encompassing term for a group of brain disorders that threatens thefrontal and temporal lobes of the brain, causing speech issues, changes in personality and loss of motor skills.
In aPEOPLE cover story last fall, Heming Willis — who channeled her own experience and extensive guidance from experts into a new book,The Unexpected Journey, to provide a roadmap for other families facing similar diagnoses — opened up about finding purpose while navigating her new normal as a caregiver.
"Early on, I was very isolated, and it felt like what was happening was only happening to us. Over time, I realized it would be beneficial to talk about it and raise awareness so people get to the doctor sooner, can be diagnosed sooner, get into clinical trials," she said.
"I wrote the book that I wish someone had handed me on the day we received the diagnosis. Caregiving is hard, and there are many people doing it with little to no support," Heming Willis added. "The only way I can get through this is to help someone else feel less alone."
Read the original article onPeople