Monday, October 28, 2019. A sort of sunny Saturday with temps in the comfortable low 60s and mid-50s by late evening. And then came the downpours on Sunday – also mild temps – with drenching rain. Sunday’s a great day for rain. By four in the afternoon, the clouds had rolled by and the streets, the pavements, the cars, the trees and the flowers had all had a good wash.
Finishing out last week. On Wednesday I went to the 4th annual Hope Rising benefit dinner at the Pierre for The Association for Frontotemporal Degeneration (AFTD). FTD is an umbrella term for a diverse group of uncommon disorders that primarily affect the frontal and temporal lobes of the brain, and causes irreversible changes to a person’s behavior, personality, language, and/or movement, while leaving memory relatively preserved.
Currently there are no approved disease-modifying treatments for AFTD. The disease affects more than 60,000 people in the United States. I’d only heard of it four years ago when Donald Newhouse and his family organized the first Hope Rising dinner in honor of his wife Susan Newhouse, and his brother Si, both of whom died of the disease. Since then, I’ve personally known two men who died of it.
It often affects people under 60. Early onset of the disease creeps up on its victim. Because in the beginning the signs are vague changes of behavior, this, coupled with delays in diagnosis, often results in devastating damage to family relationships and financial health.
Among the speakers at the dinner was a young woman named Amanda Dawson whose father was its victim. It struck him in his forties. In the beginning there was only a subtle change in his naturally good natured personality. It was barely detectable except for moments of self-expression that were perplexing to those around him.
As his condition worsened, or deteriorated, although his natural good nature was still there, he was soon unable to work, or to conduct himself in any kind of personal relationship. He needed a full time caregiver to watch over him. Eventually the family had to find a special home away from the family. Unable to work he also gained 100 pounds.
His children were still young when he died. When his daughter married and was pregnant, she learned that the likelihood of an offspring being genetically susceptible was 50%.
Other speakers that night included Rome Hartman, Producer for 60 Minutes; Benefit Chair Mr. Newhouse, and AFTD’s CEO Susan Dickinson. Mr. Newhouse told the guests, “My lovely Suzy and my brother Si had a variant of FTD, and I am committed to doing what I can to advance AFTD’s mission so that those affected by the disease, and their caregivers, will not suffer.”
AFTD honored Bank of America CEO Brian Moynihan with the Susan Newhouse and Si Newhouse Award of Hope in recognition of Bank of America’s sustained philanthropic commitment to AFTD’s mission.
There were more than 550 attending the event. I’d been to the hotel’s ballroom to dinner countless times over the years, but I don’t remember such a huge turnout. And unlike so many benefits where the crowd’s conversation often obliterates any speeches, this was a room of listeners. For good reason. Among the guests were people living with FTD, care partners, health professionals, researchers and philanthropists – all with the common goal of a world with compassionate support, effective care, and a future free of FTD.
The evening began with $1.916 million raised. In accepting his award, Mr. Moynihan surprised the room by pledging an additional $100,000 in Bank of America support, the Benefit’s total raised to more than $2 million, the most successful fundraising event in AFTD’s history.
The funds raised will play a vital role in advancing collaborative research; increased awareness; essential support for those directly impacted; education for healthcare professionals; and advocacy for appropriate, affordable services.
Paula Zahn, Emmy Award–winning journalist, Executive Producer and Host of Investigation Discovery’s On the Case with Paula Zahn hosted the event for the 4th year in a row. The evening’s Co-chairs were Katy Knox, Anna Wintour and David Zaslav. Vice Chairs were Daniel Hedaya, Kathy Newhouse Mele and Brian Rose. Tony- and Grammy-nominated star Joshua Henry closed the evening with a musical performance.
Since 2016, the Benefit has raised nearly $8 million in support of AFTD’s mission. 100% of the funds raised through the Benefit go directly to support AFTD’s mission thanks to the generosity of the evening’s leadership.