Many of the unexpected gifts that come with a dementia diagnosis have come in the form of unexpected relationships with people from all walks of life. Don Newhouse, a passionate and generous supporter of the Association of Frontotemporal Degeneration, is one of those people. His commitment to research and advocacy in honor of his late wife, Susan, and his brother was the subject of a recent article highlighting the AFTD annual Hope Rising gala, which took place last month.

Read the full story here, originally published on wwd.com and Yahoo! Lifestyle

“She’s fine. She just has a little difficulty speaking, but she’s fine. Some memory issues.” Donald Newhouse typically offered that response to friends who asked about the health of his wife Susan, then showing early signs of personality change. As it turned out, his beloved Sue wasn’t fine. Rather, she was in the early stages of a horrific neurodegenerative disorder, primary progressive aphasia, a variant of frontotemporal degeneration. FTD is a dementia which, while rare, is the most common form to hit people under age 60. It hits hard. Susan Newhouse was afflicted for 15 years, until her death in 2015. In a sad coincidence, the same disease struck her brother-in-law S.I. Newhouse Jr., who died two years later.

Their progressions toward death were surely devastating for the Newhouse families. I know because a related disorder struck my mother at a young age, fully robbing her, also over the course of about 15 years, of movement, speech, her personality. Memory? We’re not sure. She lost her ability to communicate. When her diagnosis finally came, it registered as both a shock and an enigma; everyone has heard of Alzheimer’s, but few people, myself included, could claim familiarity with cortical ganglionic basal degeneration.

Such disorders are little known and lightly understood. Officially, FTD afflicts an estimated 60,000 Americans, although the disease is almost surely underdiagnosed. Like my mother’s related malady, it is an awful scourge that steals its victims’ powers of speech and movement and can have devastating impact on behavior.

It is a disease, or more accurately, a cluster of diseases, crying out for more attention. Attention such as that it will receive tonight when the Association for Frontotemporal Degeneration holds its Hope Rising Benefit at the Pierre Hotel. Newhouse is the evening’s chair and Anna Wintour; David Zaslav, ceo of Discovery, and Katy Knox, president of Bank of America Private Bank, the co-chairs. The evening’s honoree, Bank of America ceo Brian Moynihan, will receive the Susan & Si Newhouse Award of Hope..

Clearly Donald Newhouse is fiercely committed to the cause. After a doctor connected him with AFTD, he became a passionate supporter, and pushed to hold a high-profile benefit in New York. The event is now in its fourth year. In a Sunday morning conversation, Newhouse is open about his experiences with the disease, and suggests a further conversation with Susan Dickinson, AFTD’s ceo. “My wife had it for 15 years. I lived with it,” he says. “My brother was diagnosed with the same dementia and he lived with it for four years. So I’m deeply interested in doing something that would lead to others not suffering as I suffered with them.”