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.

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

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

By mandating collaborative research, they not only advanced PXE understanding but also set a new standard in medical research.

In the face of a rare disease diagnosis for their children, two parents turn citizen scientists to spearhead research and solutions.

Confronting the non-sharing culture of medical research, they create a nonprofit to foster collaboration and accelerate gene discovery.