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Sharon Terry: Science didn’t understand my kids’ rare disease until I decided to study it

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.

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Projects | The Francis Crick Institute

The Crick is dedicated to researching the science underlying health and disease, turning discoveries into treatments to improve lives. Free exhibitions & events.