https://www.statnews.com/2023/09/21/als-gene-carrier-riluzole-toferson/

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In the Lab

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

  * Jason Mast

By Jason Mast  

Sept. 21, 2023

Jean Swidler looks out the window at her home. -- health coverage
from STAT Jean Swidler looks out the window of her home in El
Cerrito, Calif. Constanza Hevia for STAT

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Reprints

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.

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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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About the Author

Jason Mast

Jason Mast

General Assignment Reporter

Jason Mast is a general assignment reporter at STAT focused on the
science behind new medicines and the systems and people that decide
whether that science ever reaches patients.

[email protected]
@JasonMMast

Tags

ALS

gene therapy

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