POSITRACTION: A great story of reaction and action

2017-Jun-26

https://www.ted.com/talks/sharon_terry_science_didn_t_understand_my_kids_rare_disease_until_i_decided_to_study_it

Filmed November 2016 at TEDMED 2016
Sharon Terry: Science didn’t understand my kids’ rare disease until I decided … …

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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.

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What a great story of reaction and action.

“People told us you can’t herd cats. Well, yes you can if you move their food.” — Sharon Terry, PXE citizen scientist

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DNA and clinical data is the food. So we would collect blood and medical histories, and require that all scientists using these resources would share results with each other and with the people who donated.

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An OBVIOUS idea. Since the Gooferment funds so much “research”, they should adopt this standards. If “We, The Sheeple” pay for it, then I want my “share” shared!

http://www.geneticalliance.org/

I’d wish I’d know about this when Our Girl was fighting her last fight.

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If we breathe into that fear and are vulnerable with the systems and people who challenge us, our power as changemakers grows exponentially. And when we realize that working on our inner life is working on our outer life and outer work is inner work, we get down to what is real and shit gets done. (Laughter) There is no limit to what we can accomplish together.

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If this doesn’t put “gas in your tank”, then you must be dead inside.

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