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A Deeply Personal Race Against A Fatal Brain Disease

​​​​​​​View Date:2024-12-24 01:05:03

In the mornings, Sonia Vallabh and Eric Minikel's first job is to get their two garrulous kids awake, fed, and off to daycare and kindergarten. Then they reconvene at the office, and turn their focus to their all-consuming mission: to cure, treat, or prevent genetic prion disease.

Prions are self-replicating proteins that can cause fatal brain disease. For a decade, Sonia Vallabh has been living with the knowledge that she has a genetic mutation that will likely cause in her the same disease that claimed her mother's life in 2010. But rather than letting that knowledge paralyze her, Sonia and her husband made a massive pivot: They went from promising careers in law and urban planning to earning their PhDs, and founding a prion research lab at the Broad Institute of MIT and Harvard.

On today's episode, Sonia and Eric talk with Short Wave's Gabriel Spitzer about what it's like to run a lab with your spouse, cope with the ticking clock in Sonia's genes, and find hope in a hopeless diagnosis.

Listen to the other two stories in this series: Killer Proteins: The Science of Prions and Science Couldn't Save Her So She Became A Scientist.

This episode was produced by Berly McCoy with Gabriel Spitzer, edited by Gisele Grayson, and fact-checked by Abe Levine. The audio engineer was Natasha Branch.

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