ADVOCATES RAISE $1.8 MILLION+ IN FIGHT AGAINST YOUNG-ONSET DEMENTIA AT AFTD'S HOPE RISING BENEFIT

News provided by

The Association for Frontotemporal Degeneration

Mar 16, 2023, 14:07 ET

Donald Newhouse chairs benefit for The Association for Frontotemporal Degeneration, driving awareness, support for families, and research for a cure for FTD

Philanthropist Kristin Holloway honored with Susan Newhouse & Si Newhouse Award of Hope

NEW YORK, March 16, 2023 /PRNewswire/ -- More than 400 supporters joined together at The Association for Frontotemporal Degeneration's (AFTD) seventh annual Hope Rising Benefit in New York City on Tuesday. This year's charity gala – chaired by Donald Newhouse and co-chaired by Anna Wintour and David Zaslav – raised more than $1.8 million in support of the organization's critical work to support people affected by FTD, the most common form of dementia for people under 60, and drive research to a cure.

PHOTO HANDOUTS AVAILABLE HERE // PHOTO CREDIT: SEAN ZANNI/GETTY IMAGES

The benefit honored and celebrated the power of FTD stories. AFTD's CEO, Susan Dickinson, told attendees: "It isn't the fact that someone faces FTD that defines their story. We share these stories because they can bring hope. We share these stories because they reflect the resilience of people and families fighting through horrific lived experiences to connect, inform, and help others around them."

The event honored advocate, philanthropist, and AFTD Board member Kristin Holloway with the Susan Newhouse & Si Newhouse Award of Hope. In April 2017, Kristin's husband Lee Holloway, a gifted technology pioneer who co-founded the web security and performance company Cloudflare, was diagnosed with behavioral variant FTD.

To honor Lee's legacy, Kristin and the Holloway family established The Holloway Fund for Help and Hope at AFTD in 2019, committing to provide $1 million per year over 10 years to advance FTD research. Through profiles in Wired and coverage on her hometown Washington D.C.'s NBC affiliate, she has also raised awareness on behalf of so many others.

At the benefit, Holloway spoke honestly about the difficulty of maintaining hope despite the challenges of FTD: "This disease brings hopelessness, a darkness so vast it can be very, very hard, if not impossible, to navigate. It can be hard to feel anything but grief, anger, despair and, well, hopelessness. All things that I felt for a very long time, and still struggle with today – but in that struggle and in that darkness one thing kept me going. It was the hope that our son could have a happy life."

She concluded, "As challenging and confounding as the darkness of this journey can be today, seeing all of you in this room gives me a certainty that we will bring an end to this disease."

Benefit Chair Donald Newhouse told attendees: "I'm proud of what AFTD's Board and staff are achieving to bring a diagnosis to families earlier and to bring treatments and a cure closer to realization. Through her support and her collaboration, tonight's honoree… AFTD board member Kristin Holloway… has played a large part in enabling AFTD to make those advances possible."

AARP Senior Director of Caregiving Rita B. Choula delivered the night's keynote speech. Choula recounted losing her mother to FTD in 2020. In remarks that left the crowd deeply moved, Choula recalled how difficult it was to diagnose her mother's condition and the challenges that followed as she and the family sought to provide care that honored her mother's needs as an individual.

Choula drew attention to the difficulty caregivers often face in talking about their journeys, as well as the profound economic challenges they may face as they navigate supporting a loved one. "Family caregivers from all backgrounds find it difficult to talk about their own emotional stress associated with the role," she said. "It is so difficult for many of them to admit the often overwhelming costs that come with providing care."

"Awareness is growing – growing faster than ever through the power of FTD stories," Newhouse told the crowd. "In that light, I'm moved to celebrate and welcome to our audience a courageous, caring, thoughtful woman, Emma Heming Willis. She has taken the painful step of publicly discussing her husband Bruce's battle with FTD, causing a transformative worldwide increase of awareness of this devastating disease."

The benefit marked one of Emma Heming Willis's first public appearances since the family announced in February 2023 that her husband, the beloved retired actor Bruce Willis, was diagnosed with FTD.

"Thank you for welcoming me, AFTD, to my new home. It's not the room I ever dreamed of being in, but let me tell you, it's a room of fierce love and resilience," Willis wrote in an Instagram post following the event. "I'm here to join the cause alongside all of you."

In a video message, U.S. Senate Majority Leader Chuck Schumer (D-NY) voiced support for AFTD's urgent work and reiterated his commitment to work at the policy level to drive advancements for a cure.

The costs for the event were covered by the evening's leadership, so that all proceeds went directly to support AFTD's mission. Leading supporters of the event included Bank of America, Judy and Leonard Lauder, and Warner Bros. Discovery.

About FTD: FTD is also frequently referred to as frontotemporal dementia, frontotemporal lobar degeneration (FTLD), or Pick's disease. It represents a group of brain disorders caused by degeneration of the frontal and/or temporal lobes of the brain. Learn more at https://www.theaftd.org/what-is-ftd/disease-overview/

SOURCE The Association for Frontotemporal Degeneration