Science Didn't Understand My Kids' Rare Disease Until I Decided to Study It

Discover how a mother's determination revolutionized medical research in this inspiring 15-minute TED Talk. Follow Sharon Terry's journey from stay-at-home mom to citizen scientist as she recounts her family's experience with the rare genetic disorder pseudoxanthoma elasticum (PXE). Learn how Terry and her husband worked tirelessly in labs, identified the gene responsible for PXE, and spearheaded initiatives to promote collaboration among researchers. Explore the challenges faced by rare disease communities and the power of patient advocacy in driving scientific progress. Gain insights into the importance of data sharing, overcoming barriers in medical research, and the impact of citizen scientists in advancing healthcare. Be inspired by Terry's fearless approach to tackling seemingly insurmountable obstacles and her message about the transformative power of love and determination in the face of adversity.

Intro
The worst Christmas
Backstory
Elizabeths rash
Elizabeths eyes
What do you know
Sharing
No systematic effort
Two major barriers
PXE International
Hardcore research
Fear
Genetic Alliance
Citizen scientists
Stakeholders
How do we make it
Take risks
My fear
Where does it come from
I love people
The enormity of our loving
The boundless capacity for love
I dont fear fear
My kids