Men's Health


Source: Faber was photographed in San Francisco on August 21 with his genetic code.

Onno Faber was 33 when he woke one day to a terrible sound in his left ear. Every noise around him, even a toilet flush, sounded like breaking glass. A series of tests produced no answers, until the day he walked into a doctor’s office and saw a bright circle—a tumor—in the image of his brain on the computer screen. And Onno thought, “Fuck!”

Onno had neurofibromatosis type 2, or NF2, a rare disorder in which tumors grow on the cells surrounding certain nerves within the central nervous system that enable hearing, balance, and movement. It wouldn’t kill him, the doctors said, but in time he would almost surely lose his hearing and perhaps his eyesight and mobility.

At the time, Onno was living in Berlin while launching a photo-sharing smartphone app. In the three years since the shock of his diagnosis, he has transformed his grief into determination. He’s confronting biological fate with technological invention, attempting to solve this medical puzzle with gene sequencing, artificial intelligence, and the collaborative spirit of Silicon Valley. He’s hacking his own genomic data.

“My mission is to make it exciting to work on rare diseases, and genomics is helping with that,” Onno says. “With what’s currently possible, you can kind of start working on it from your garage.”

It all started during a chat with his friend Mo Rahman in San Francisco. (Onno, a Netherlands native, had moved to the Bay Area in early 2015 to strengthen his tech startup.) It so happens that Rahman (who is never Rahman, always Mo) is a biochemist and informatics expert who develops genomic analysis software for a living. Mo is also a shy guy who plays electric guitar and proclaims on his blog that he’s “a firm believer that discordant songs are more worthwhile than upbeat jingles.”

When Onno got sick, he started asking Mo questions. NF2 is sometimes hereditary, but the mutation known to cause NF2 struck him at random. “I started explaining to [Onno] what tumors are and how ‘spelling errors’

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