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. 

STAT+ Exclusive Story

Already have an account? Log in

This article is exclusive to STAT+ subscribers

Unlock this article — plus in-depth analysis, newsletters, premium events, and networking platform access.

Already have an account? Log in

Already have an account? Log in

Individual plans

Group plans

Monthly

$39

Totals $468 per year

$39/month Get Started

Totals $468 per year

Starter

$30

for 3 months, then $39/month

$30 for 3 months Get Started

Then $39/month

Annual

$399

Save 15%

$399/year Get Started

Save 15%

11+ Users

Custom

Savings start at 25%!

Request A Quote Request A Quote

Savings start at 25%!

2-10 Users

$300

Annually per user

$300/year Get Started

$300 Annually per user

View All Plans

Get unlimited access to award-winning journalism and exclusive events.

Subscribe

Log In