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A man on a mission: Onno Faber and his NF2 journey

14 October 2021

Onno Faber at a meeting to organize his hackathon. Photo courtesy of Onno Faber

This article features a series of five articles written by Grace Rubenstein and has been reversioned with permissions from NEO.LIFE 

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Onno Faber was 33 and living in Berlin, launching a photo-sharing smartphone app, when he awoke one morning to a terrible sound in his left ear. Every noise around him, even a toilet flush, sounded like breaking glass. A series of medical tests produced no answers, until the day Onno walked into the doctor’s office and saw a bright circle, a tumor, in the image of his brain on the computer screen. And Onno thought, “F**k!”

Onno had Neurofibromatosis Type 2, or NF2, a rare disorder in which tumors grow in the nerve cells that enable hearing, balance, and movement. Doctors did not expect Onno’s case to kill him, but in time Onno would almost surely lose his hearing and perhaps his eyesight and mobility as well.

In the three years since that shock, Onno has transformed his initial grief into determination to do things in a groundbreaking way  -  by confronting biological fate with technological invention. His genre-bending quest brings cutting-edge gene sequencing together with artificial intelligence and the collaborative spirit of Silicon Valley to solve a medical puzzle. And though the gene mutation that causes NF2, which is sometimes hereditary, struck Onno at random, it turns out that he is just the right person, in just the right place, with just the right friends to do this.

Carry on reading Part One:

Onno Faber addresses the hackathon. Photo courtesty of Onno Faber

On a Friday summer evening in San Francisco, 150 smart young people flooded one floor of a South-of-Market office building and filled the space with their excited voices. Onno Faber, a Dutch tech entrepreneur with tousled blond hair, flitted among them, leaning in close with his right ear to hear each person above the hubbub. He was the reason they all had come.

“I don’t know anybody,” Onno said of the guests, who had traveled from universities and pharmaceutical companies across the country. Then he laughed and added: “But they will know me.”

The crowd had come to spend the weekend crunching the data of Onno’s DNA. They’d be searching for genetic clues in hopes of curing his Neurofibromatosis Type 2, or NF2  -  a rare disorder that had already stolen the hearing in his left ear and caused the tumors now growing slowly in his right hearing nerve and spine. Eventually they could wipe out the rest of his hearing, his sight, and his ability to walk.

Read Part Two:

Onno in San Francisco. Photo courtesy of Damien Maloney, NEO.LIFE

In a top-floor bedroom on the north side of Chicago, Alexandra White sat at a steel-and-glass desk in a sparkly red kitchenette chair and wrangled one iridescent disc after another into the CD drive on her laptop. She uploaded thousands of images from her brother’s medical records, along with nearly 150 pages that she had scanned. Fiery and determined, Alex pulled from a massive cup of coffee as she plowed through the task.

At the same time, she appeared on a computer screen in a cave-like meeting room in San Francisco, where a sunny-tempered tech entrepreneur named Onno Faber watched her every step with rapt attention. They went on this way on a video conference for hours, Alex uploading files and commenting on glitches in the process, Onno furiously typing lines of code.

This test run of Onno’s new software was a pivotal moment in his quest to transform the treatment of rare diseases like the ones he and Alex’s brother have. Onno is on a mission to combine the promise of genetics with newfound computational power to ignite research on neglected illnesses. And this session with Alex would help launch his next stage.

Continue reading Part Three:

Onno at a singing lesson in San Francisco. Photo courtesy of Winnie Wintermeyer, NEO.LIFE

Onno Faber, a 36-year-old tech entrepreneur, stands straight up in the center of a modest living room, his shoeless feet planted in the gray striped rug. He looks trustingly at the music teacher who faces him, flashing her his frequent, accepting smile. Then he takes a breath, lifts his clear tenor voice, and sings.

Tomorrow, Onno will be video conferencing with parents of children who have rare diseases, to pitch them on his new tech platform to propel unconventional medical research. Today, he is far away from all that, as his voice reverberates through this little San Francisco room, lifting it up and away from the desperate streets of the Tenderloin neighborhood below. The notes vibrate in his wavy blond hair and green eyes, and in the tumor that’s growing quickly on his right hearing nerve  -  the only hearing nerve he has left. Onno is hearing the sound fill his body while he still can, before neurofibromatosis takes the other nerve away.

There comes a moment in any quest when it pivots from idea to reality. The blueprint is sketched, the parts are assembled, and someone hits the ignition — and with that, the idea is no longer in a safe, controlled space. Other people are watching now, influencing it, invested in it. The transition is equal parts exciting and scary. There is no turning back now.

Read Part Four in full:

Onno Faber. Photo courtesy of Winnie Wintermeyer, NEO.LIFE

In October 2019, Onno Faber made the familiar drive from San Francisco to a specialized clinic in Los Angeles to lie down on a gantry and slip his head inside the giant white tube of an MRI machine. He’d been making the trip every three months for about five years, to glimpse the tumor growing on his right auditory nerve.

For a year and a half, as Onno slugged down 40 pills a week and suffered through side effects from fever to brain fog, the tumor held steady. And within that pause Onno kept hearing through his right ear (another tumor took out his left hearing nerve years ago). He kept singing to himself in his apartment in San Francisco, retained his ability to walk steadily, balance, and ski with friends. He bought time - time to put his entrepreneurialism and his cadre of tech-savvy friends to work pursuing treatments for his rare genetic disorder and the thousands of others that receive little investment from pharma companies that prefer big markets. 

The next day, the results came back: the tumor had grown 40 percent. 

Read Part Five in the series:

NEO.LIFE asks the big questions about how we’re engineering our own evolution.
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