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Study mode:
on
1
Intro
2
The worst Christmas
3
Backstory
4
Elizabeths rash
5
Elizabeths eyes
6
What do you know
7
Sharing
8
No systematic effort
9
Two major barriers
10
PXE International
11
Hardcore research
12
Fear
13
Genetic Alliance
14
Citizen scientists
15
Stakeholders
16
How do we make it
17
Take risks
18
My fear
19
Where does it come from
20
I love people
21
The enormity of our loving
22
The boundless capacity for love
23
I dont fear fear
24
My kids
Description:
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.

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

TED
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