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Sharon Terry's TEDMED Talk

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A Message From Sharon

Preparing for this TEDMED talk gave me a wonderful occasion to pause and reflect. With the release of the talk I have the space to give more color to experiences and ideas I shared there. I believe that over these years our propensity to follow what emerges, as it emerges, has served our quest well. We work now to retain our beginner's mind, even as we continue to be shocked by the inability of researchers and institutions to see beyond their own interests, which often are linked to securing funding, getting published, and promoted. We continue to seek ways to show the research community the value of true partnership with individuals, families, and communities. It would be unconscionable in any other industry to leave out the parties who will be the biggest customer of the product. We continue to look for ways to find that tipping point where it will make sense to include the true experts. We welcome all in our quest.

You can read the message in full at


The Talk

Sharon's TEDMED talk can be viewed in full at


About Sharon

As ‘just a Mom’ with a master’s degree in Theology, she cofounded PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE), in response to the diagnosis of PXE in her two children in 1994. With her husband, she co-discovered the ABCC6 gene, patented it to ensure ethical stewardship in 2000, and assigned their rights to the foundation. She subsequently developed a diagnostic test and conducts clinical trials. She is the author of 140 peer-reviewed papers, of which 30 are clinical PXE studies.

Sharon is an Ashoka Fellow. With her husband Patrick, she is an avid paragliding pilot, rock climber and weekend farmer.

See the Press Release - Click Here
Sharons Ted Profile Page - Click Here
Visit Sharon Terry's Personal Website -
Follow Sharon on Social Media - Twitter, Facebook

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