Science didn't understand my kids' rare disease until I decided to study it

Title:
Science didn't understand my kids' rare disease until I decided to study it
Speaker:
Sharon Terry
Description:

Meet Sharon Terry, a former college chaplain and stay-at-home mom who took the medical research world by storm when her two young children were diagnosed with a rare disease known as pseudoxanthoma elasticum (PXE). In this knockout of a talk, Terry explains how she and her husband became citizen scientists, working midnight shifts at the lab to find the gene behind PXE and establishing mandates that require other researchers to share biological samples and work together.

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Video Language:
English
Team:
closed TED
Project:
TEDTalks
Duration:
15:02
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TED2 changed primary url from https://s3.amazonaws.com/ted.conferences/talk/transcript/2016P/None/SharonTerry_2016P-transcript.mp4 to https://s3.amazonaws.com/ted.conferences/talk/transcript/2016P/None/SharonTerry_2016P-transcript.mp4
TED2 changed primary url from https://s3.amazonaws.com/ted.conferences/talk/transcript/2016P/None/SharonTerry_2016P-transcript.mp4 to https://s3.amazonaws.com/ted.conferences/talk/transcript/2016P/None/SharonTerry_2016P-transcript.mp4
TED2 changed primary url from https://s3.amazonaws.com/ted.conferences/talk/transcript/2016P/None/SharonTerry_2016P-transcript.mp4 to https://s3.amazonaws.com/ted.conferences/talk/transcript/2016P/None/SharonTerry_2016P-transcript.mp4
Cissy Yun approved Chinese, Simplified subtitles for Science didn't understand my kids' rare disease until I decided to study it
Cissy Yun edited Chinese, Simplified subtitles for Science didn't understand my kids' rare disease until I decided to study it
TED2 changed primary url from https://s3.amazonaws.com/ted.conferences/talk/transcript/2016P/None/SharonTerry_2016P-transcript.mp4 to https://s3.amazonaws.com/ted.conferences/talk/transcript/2016P/None/SharonTerry_2016P-transcript.mp4
Marta Fraga-Guntín edited Galician subtitles for Science didn't understand my kids' rare disease until I decided to study it
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