How a mother became a scientist to solve a rare disease mystery
In short: When her two children were diagnosed with pseudoxanthoma elasticum (PXE), Sharon Terry transitioned from chaplain to citizen scientist. This video follows her journey of investigating the genetic roots of the rare condition.
Sharon Terry and her husband took on the role of citizen scientists after their children were diagnosed with the rare disease pseudoxanthoma elasticum (PXE). The talk details their intensive efforts, including working late-night shifts in a laboratory, to identify the specific gene responsible for the condition. Beyond the research, Terry describes how they helped establish new mandates that require researchers to collaborate and share biological samples.
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Sources
- Summary by Intellect · source: Science didn't understand my kids' rare disease until I decided to study it | Sharon Terry
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