Science Didn't Understand My Kids' Rare Disease Until I Decided to Study It - Sharon Terry - TED - 2016

Discover how a mother's determination to understand her children's rare genetic condition led her to become a pioneering force in citizen science and biomedical research. Learn about Sharon Terry's journey from a parent with no medical background to the President and CEO of Genetic Alliance, a network of over 10,000 organizations. Explore the challenges she faced, including the lack of information sharing and barriers in the medical community, and how she overcame them by founding PXE International. Gain insights into the transformative power of citizen science in healthcare and research, and be inspired by Terry's message about overcoming fear and making a difference in the face of adversity.

Intro
The worst Christmas
Backstory
Lack of sharing
Two major barriers
PXE International
Hardcore research
Making a difference
Science is changing the game
Genetic Alliance is experimented
Fear of not being enough
I dont fear fear