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SED 559: Nashville Part 2 of 2

October 1, 2025

It's that time of year, and we just held our annual Hao-Fountain conference.

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SED 558: Nashville Part 1 of 2

September 24, 2025

It's that time of year, and we just held our annual Hao-Fountain conference.

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#390: Positive

July 6, 2022

Our family is totally packed, ready to jet off to Germany for the phenotyping study and a massive family conference. And at the eleventh hour, there's a slight curveball.

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Tags phenotyping study, conference
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Screen+Shot+2020-10-12+at+8.12.35+PM.jpg

#300: Chicago, in Your Living Room

October 14, 2020

We shoulda been in the Windy City this week. And we weren't. But we did go to a place that made a difference and moved the needle.

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Tags USP7, conference, research
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#249: Getting on the Map Pt 2

October 23, 2019

The map turns out to be the key to everything we're doing right now. I'm talking about the rare-disease map. We want to get on it. And it is slowly beginning to happen.

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Tags conference, research
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#245: Back to Global Genes

September 25, 2019

In 2015, I was just starting out. Fresh out of the long, winding, painful chute of diagnosis with our T-Bird. What a difference 1460 days make.

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Tags advocacy, connection, conference
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#117: We Belong

April 12, 2017

We've been waiting for almost Tess's entire life to meet someone like her. To meet a family like ours. And it finally happened.

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Tags USP7, genetics, Baylor College of Medicine, conference, families
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I've been writing about Tess since February 2014.

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