Science didn't understand my kids' rare disease until I decided to study it
1,396,742 views | Sharon Terry • TEDMED 2016
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 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 researchers to share biological samples and work together.
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 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 researchers to share biological samples and work together.
This talk was presented at an official TED conference. TED's editors chose to feature it for you.
Learn more about how the Platform for Engaging Everyone Responsibly might be useful to your work.
Donate to PXE International to support four clinical trials this year.
About the speaker
Sharon Terry is developing ways for ordinary people to transform biomedical research and healthcare.
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This talk was presented at an official TED conference. TED's editors chose to feature it for you.
Learn more about how the Platform for Engaging Everyone Responsibly might be useful to your work.
Donate to PXE International to support four clinical trials this year.