“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.”
One of AFTD’s prime goals is raising awareness, which Newhouse views as essential, even as treatments are slow in coming. “One absolutely necessary element if there is ever to be a cure for any dementia, and specifically for frontotemporal degeneration, is that people have to become more aware of the disease. I felt with the total agreement of the AFTD that having an event in New York would help,” he says.
In a separate phone call, Dickinson also stressed the importance of increasing awareness. “Our big challenge is educating the world, spreading awareness that not all dementia is Alzheimer’s,” she notes.
All terminal illnesses devastate, but dementia breeds a particular torment, not just for its sufferers but for those who care for loved ones who are losing themselves. Despite the prevalence of Alzheimer’s, Newhouse maintains that, “at the moment, there is a stigma to dementia. People lose their memory or behave erratically or can’t speak. People don’t want to talk about it. It’s not considered a disease that you particularly want to tell people about.”
Both he and Dickinson reference Rev. Tracey Lind, whom Newhouse calls “a force of nature.” Lind retired from her position as an Episcopal minister in 2016 after receiving a diagnosis of dementia, and refocused her energies on shining a light on her disease. Newhouse passed along a video of Lind’s sermon to Temple Emanu-El on Passover this year. In it, she says, “I liken dementia to leprosy in Biblical times, to cancer in the 1960s, to AIDS in the 1980s — incurable and not fully understood diseases spoken of in hushed voices with an element of shame and blame.”
While awareness is critical, Newhouse notes that it is only one tier of AFTD’s three-part approach to its mission. The other two pillars: research and support. He has thrown himself into the fight against it with professional zeal. He rattles off statistics on the economics of FTD-related illnesses: “[Dementia] costs the economy about $290 billion a year in Medicare costs, in health-care costs, in lost production, in people. It’s a very expensive disease.” And he provides facts about the connections between FTD and other diseases: “There is a protein called TDP-43, which becomes mutated in both ALS and in frontotemporal degeneration.”
Dickinson, who holds an MS in genetic counseling, expands on the importance of research. “Because FTD is so rare, most clinicians have not seen it before, even most neurologists,” she explains. “And so on average, our people take more than three and a half years to get an accurate diagnosis. And those are just the ones who actually finally get here, which takes a lot of tenacity.”
To say that the brain is a complicated organ is probably one of the lamer understatements a layperson can make about science. (Yes, the brain is complex, space is big and the ocean, deep.) But even those who know the brain, the scientists who study it, admit that they don’t know it well enough. In 2013 the NIH launched the BRAIN (short for Brain Research Through Advancing Innovative Neurotechnologies) Initiative — an ambitious public/private sector collaboration aimed at enhancing our understanding of the human brain. Says Dickinson: “There are all these new technologies coming out of the BRAIN Initiative that we’re already applying to understanding what’s going on in the brain and the rest of the nervous system. A lot of it is scanning techniques and more kinds of PET scans or electron microscopy.”
Still, in the battle to understand, treat and cure devastating neurological disorders, progress is slow-going. Dickinson concedes that “if you look at all the neurodegenerative conditions — that would include Alzheimer’s, that would include Parkinson’s, that would include FTD, that would include ALS, that would include Lewy body dementia — there are no disease-modifying treatments approved for any of those conditions. Not a one.” Yet she adds that if a breakthrough comes for one such conditions, the benefits will radiate outward, impacting the others.
To that end, the aware-raising push from organizations like AFTD has borne fruit in recent years. “When I started here in 2008, we never got any calls from biotech or pharmaceutical companies,” Dickinson says. “Now, at the last meeting we held, I think there were representatives from 27 different companies in the room.” Ironically, the fact that the search for effective treatments is still in its infancy can work to the advantage of discovery. Dickinson explains that since research is still in the “pre-competitive space,” companies are more likely to collaborate than to race each other to a finish line. “Before a drug company actually has a potential drug that it is nearing market with, long before that, when you’re doing the research and trying to understand how to run a clinical trial in a group of patients, there are a lot of common challenges that companies are eager to work on together with our academic scientists.”
It also helps to have a champion like Newhouse, whom Dickson labels “invaluable. It’s not just what he can bring financially — and he has been incredibly generous and is funding a number of exciting research initiatives with us. But he has done more than that. As you experienced, he shares his story, and you get even more out of that than just what the money can buy you. He is an engaged partner dedicated to working on this disease, and maybe that foundation or that philanthropist had never heard of FTD before, and we have pulled them in to the cause with us.”
While strides are being made, a cure or even a proven course of treatment remains elusive. Asked if something tangible is close, Dickinson notes the word “close” likely holds different meaning for researchers than for a family watching a loved one fade away.
The cruelty of the disease is heightened by a sense of isolation. Lind understands all too well and is determined to change that. In her sermon, she calls dementia “the most feared aspect of aging. Individuals with dementia hold up a mirror that scares us, for in it we see ourselves bewildered, lost, forgetful, incoherent, isolated, dependent, vulnerable and alone.” Her greatest fear as her disease progresses is “being forgotten by other people. In fact, my biggest fear is being abandoned as this disease progresses. So I’ve been lining up a group of friends who have promised to stay with me on the journey.”
A different kind of loneliness can take hold of caregivers, who often try to hide the symptoms from others. “The instinct was never to mention it,” says Newhouse, who now disavows his early denials of Sue’s condition. “I realize now — or I realized deep into the illness — that this is just wrong. But dementia is not something that people will talk about, when their loved ones [are stricken].”
Given the rarity of the diagnosis, those closest to the afflicted find themselves at a loss, first, to understand, and then, to explain. Dickinson puts it quite simply and personally. “Your mom’s diagnosis rolled off your tongue,” she says. “But it takes you a while to learn all those syllables, right? And you remember when you came back and you reported to family or neighbors or whatever what the diagnosis was, you get a totally blank stare.”
FTD is a disease, then, not just of an individual, but of that individual’s entire support network. Given that it often strikes its victims young, sometimes as early as 45, life expectancies can be long, extracting a lengthy emotional as well as financial toll on caregivers. “Millennials are being very much affected by this as their parents are affected by dementia,” Newhouse notes. Dickinson adds that since self-awareness is located in the frontal lobe, even early on, patients themselves are sometimes oblivious to what is happening.
With this in mind, creating a support system for families and friends of those with FTD is a critical part of AFTD’s mission. The organization has established a shared-stories registry and every year hosts an education conference for 300 to 400 people. This year’s event took place in Baltimore in April, with the option to live-stream for those who couldn’t make the trip. “There is a moment early in the day where everybody realizes, ‘everyone in this room understands what I’m living, and for once I don’t have to explain everything about why my life is the way it is.’ It’s almost magical,” Dickinson says.
Until science catches up with emotion, helping to build community is perhaps the most impactful current treatment for FTD. As Lind so eloquently puts it in her Passover sermon, “We can’t afford to be out of sight and out of mind. Rather we need you, the community, to come to us. When we can no longer remember, you become our memory, not only reminding us of who you are but if necessary, reminding us of who we are.”
Yet while Lind’s bravery reads as heroic, she foresees a bleak personal future for which, right now, there is no clinical combatant. So, how to retain hope — that great gift for which tonight’s benefit is named — in the face of helplessness?
For Newhouse and Dickinson, the answer lies in relentless resolve. “We’re still a long way from it being a good situation,” Dickinson says. “But every single person and every single family that is willing to have the courage to speak up — I think that takes a chink out of that wall every time.”
To that end, I ask Newhouse if his deep, personal connection to FTD makes his proactive commitment to fighting it more difficult in a way, if it constantly renews the trauma of his loss. He answers with a resounding no. “It makes it easier,” Newhouse insists. “My lovely wife was very much involved in the philanthropic world, and there is no question in my mind that she would want me to do what I’m doing, she would support it and she would applaud it. I’m supporting her by doing what I’m doing.”