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kottke.org posts about D.T. Max

The Incurable Disease vs the Relentless Couple

posted by Jason Kottke   Jan 16, 2019

When Sonia Vallabh lost her mother to a rare disease called fatal familial insomnia, she soon found out that she had inherited the disease, that there was no cure, and that she’d be dead in “a decade or two”. Despite almost no scientific training, Vallabh and her husband both quit their jobs to work on a cure. Talk about going all-in.

Within a few weeks of the diagnosis, Sonia had quit her job to study science full time, continuing classes at MIT during the day and enrolling in a night class in biology at Harvard’s extension school. The pair lived off savings and Eric’s salary. Sonia had expected to take a temporary sabbatical from her real life, but soon textbooks and academic articles weren’t enough. “The practice of science and the classroom version of science are such different animals,” Sonia says. She wanted to try her hand in the lab. She found a position as a technician with a research group focusing on Huntington’s disease. Eric, not wanting to be left behind, quit his job too and offered his data-crunching expertise to a genetics lab. The deeper they dove into science, the more they began to fixate on finding a cure.

They’re now on the brink of getting their Harvard PhDs and are pushing ahead with a promising medical therapy.

As soon as the couple began their presentation, Lander says, there was a sense of “pushing on an open door” — quite a surprise, given the agency’s stodgy reputation. “People still flat-out don’t believe the FDA was cool with it,” Minikel says. Afterward, one of the 25 scientists in the audience pulled Lander aside and said, “That was one of the best presentations I’ve ever seen.” Schreiber agreed. He alluded to a pharmaceutical company he’d helped set up early in his career. “Twenty-four years into that company, there was nothing to show for it. Not one thing,” he says. “For two graduate students who are not trained in science to come in and do what they did? Absolute forces of nature, savants. They keep seeing things that other people don’t see.”

Update: D.T. Max wrote a book on prions and prion-based diseases called The Family That Couldn’t Sleep. I looked in the kottke.org archives and found a 2010 post on a National Geographic article Max wrote about sleep that specifically referenced fatal familial insomnia:

The main symptom of FFI, as the disease is often called, is the inability to sleep. First the ability to nap disappears, then the ability to get a full night’s sleep, until the patient cannot sleep at all. The syndrome usually strikes when the sufferer is in his or her 50s, ordinarily lasts about a year, and, as the name indicates, always ends in death.

(via @mattbucher)

“More of a discovery than an invention”

posted by Jason Kottke   Oct 15, 2013

For this week’s New Yorker, D.T. Max has written a profile of Twitter co-founder Jack Dorsey.

Jack Dorsey, the tech entrepreneur, takes the No. 1 bus to work, and he likes to catch the 7:06. It carries him nearly from one side of San Francisco to the other-down California Street almost to Market. A ride costs two dollars, but Dorsey has a monthly pass, so the actual price, he told me on a recent commute, is closer to a dollar seventy-five. “If you buy it in bulk, it saves you a little bit of money,” he explained. As we got on, he added, “I love the bus. It’s consistent, and it runs every few minutes. But it’s also express. If I took another bus, it’d be stopping.” The offices of Square, his mobile payment-processing service, just moved. He used to follow his bus ride with a pleasant twenty-minute walk down Mission to the San Francisco Chronicle Building, where Square rented office space; now his commute ends with a short ride on a Muni train to Square’s new headquarters, which have a panoramic view of the city. When we got to the Muni stop, Dorsey, who is thirty-six, pointed it out with the excitement of a six-year-old.

No idea if this was intentional, but Max has managed to write a piece that mirrors Twitter itself: it is both substantial and full of ridiculous things.

David Foster Wallace biography

posted by Jason Kottke   Aug 21, 2012

Every Love Story Is a Ghost Story, D.T. Max’s biography of David Foster Wallace, is out next week.

David Foster Wallace was the leading literary light of his era, a man who not only captivated readers with his prose but also mesmerized them with his brilliant mind. In this, the first biography of the writer, D. T. Max sets out to chart Wallace’s tormented, anguished and often triumphant battle to succeed as a novelist as he fights off depression and addiction to emerge with his masterpiece, Infinite Jest.

Since his untimely death by suicide at the age of forty-six in 2008, Wallace has become more than the quintessential writer for his time — he has become a symbol of sincerity and honesty in an inauthentic age. In the end, as Max shows us, what is most interesting about Wallace is not just what he wrote but how he taught us all to live. Written with the cooperation of Wallace’s family and friends and with access to hundreds of his unpublished letters, manuscripts, and audio tapes, this portrait of an extraordinarily gifted writer is as fresh as news, as intimate as a love note, as painful as a goodbye.

The Daily Beast has an excerpt of the book. Max also wrote an article about Wallace in 2009 for the New Yorker. (via df)

The Mysteries of Sleep

posted by Jason Kottke   May 06, 2010

D.T. Max on the Secrets of Sleep for National Geographic.

An animal must lie still for a great stretch of time, during which it is easy prey for predators. What can possibly be the payback for such risk? “If sleep doesn’t serve an absolutely vital function,” the renowned sleep researcher Allan Rechtschaffen once said, “it is the greatest mistake evolution ever made.” […]

At Stanford University I visited William Dement, the retired dean of sleep studies, a co-discoverer of REM sleep, and co-founder of the Stanford Sleep Medicine Center. I asked him to tell me what he knew, after 50 years of research, about the reason we sleep. “As far as I know,” he answered, “the only reason we need to sleep that is really, really solid is because we get sleepy.”

And this fatal familial insomnia sounds like a horrible disease:

The main symptom of FFI, as the disease is often called, is the inability to sleep. First the ability to nap disappears, then the ability to get a full night’s sleep, until the patient cannot sleep at all. The syndrome usually strikes when the sufferer is in his or her 50s, ordinarily lasts about a year, and, as the name indicates, always ends in death.