They carry a gene for ALS but aren’t sick. What does medical research owe them?

Nine months after her mom died of ALS, Jean Swidler walked into a doctor’s office at Columbia University and asked to learn her own fate.

A genetic counselor swabbed her cheek or took a blood sample — Swidler can’t remember which — and called the next month. Gently, the counselor told her she had the same mutation as her mom. It was exceedingly likely that she, too, would develop the fatal, neuron-wasting disease or a related condition, although no one could say when.

Swidler wasn’t shocked. ALS had long been a spectral member of her life. It took her great-grandfather before she was born and her grandmother when she was 6 years old. Her mom, Kathy Cronin, lived her life in fear of the disease, an anxiety both her children and her doctors dismissed, until, in the summer of 2017, she developed symptoms that were impossible to ignore. 

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