For over an hour, Jeff Vierstra lay still in Columbia University’s ALS clinic, as a doctor poked him ankle-to-throat with an electric needle. Sometimes, he wiggled it around in Vierstra’s skin. Sometimes, he asked Vierstra to flex a muscle. A computer tracked the results. Later, another doctor would read Vierstra’s future in the graphs it wrote, fate engraved in the curves of an electrical wave pattern.
Vierstra did not think he had amyotrophic lateral sclerosis, the fatal, paralyzing muscle-wasting disease, when he walked into the clinic in fall 2020. He was 36. He climbed Mount Rainier every year. But he had reason to worry. His mother died of ALS, when she was 32 and he was 2. All three of her siblings died of ALS. Growing up, it was a family mystery. But there was nothing to do, no genetic test and no treatments. So he tried not to think about it, even as he became a scientist himself.
Then, around Christmas 2019, with the family gathered near their childhood Wisconsin home, his oldest sister, Erin, mentioned she couldn’t lift her neck at yoga. They urged her to see a neurologist. But she couldn’t find an appointment. So Vierstra, on a lark, emailed a Columbia ALS researcher he once met at a genetics conference. The researcher got the head of the clinic, Neil Shneider, to squeeze Erin in. Years later, Vierstra would still marvel at their luck.
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