A Deeply Personal Race Against A Fatal Brain Disease

Short Wave

NPR

Daily News, Nature, Life Sciences, Astronomy, Science, News

4.7 • 6K Ratings

🗓️ 21 November 2022

⏱️ 14 minutes

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Summary

In the mornings, Sonia Vallabh and Eric Minikel's first job is to get their two garrulous kids awake, fed and out the door to daycare and kindergarten. They then 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. Upon discovering she had the mutation, Sonia and her husband made a massive pivot: They went from careers in law and urban planning to earning their Ph.D.s, 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 one's spouse, cope with the ticking clock in Sonia's genes, and find hope in a bleak diagnosis.

Transcript

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0:00.0	You're listening to Shortwave from NPR.
0:04.3	Hey everyone, it's Gabriel Spitzer here.
0:08.1	We just met Sonya Vallebe and Eric Minnichol in our last episode and today we're starting
0:13.0	out at their breakfast table.
0:14.8	Our kids are now five and two and a half and so our morning routine largely revolves around
0:20.1	trying to channel their like bottomless energy in like remotely the right direction.
0:26.2	Eric is actually our morning superhero.
0:28.2	He gets up before anybody else.
0:29.9	He prepares a beautiful breakfast with a novel vegetable every day.
0:34.1	But Eric, you put vegetables in the breakfast?
0:36.8	Oh yeah.
0:37.8	That's a real day.
0:38.8	I know, I know.
0:39.8	Like what?
0:42.0	This morning was actually sweet potato greens, but we do all kinds of stuff.
0:46.3	Yeah.
0:47.3	We're serious about breakfast.
0:49.1	And then I go in and wake up our daughter, which has to happen in like the gentlest possible
0:54.1	way.
0:55.1	And then we get the little guy, usually the little guy just comes storming out of his room
0:59.9	and he's got these big thomping toddler footsteps and this sort of like whirlwind convenes
1:06.0	on the breakfast table.
	...

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