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#200: The Smartest

November 14, 2018

Working on USP7 is gonna require some super-intelligent solutions. And I went on a trip to find them.

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Tags undiagnosed syndrome, NIH, UDN, genetics
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#118: Pac-Man and Giraffe Tongues

April 19, 2017

In Houston we families have gotten to know each other, and now we get to work. A man from Memphis unveils three secrets about USP7. All of which blow our minds.

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Tags USP7, genetics, Baylor College of Medicine
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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
1 Comment

#94: Hooray for This Conference Call

November 2, 2016

This week:  it's not about leveraging our synergies or any of that corporate-speak. It's just the best darned conference call I've ever had.

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Tags genetics, USP7
1 Comment

#86: Au Contraire, Ma Soeur

September 7, 2016

This week:  the latest connection. More discoveries, this time from farther away than ever before, as we try to unlock the puzzle of USP7 for the T-Bird.

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Tags genetics, USP7
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#84: Super-Quick Genetics Update

August 24, 2016

This week: doing something a little different. Just a quick check-in, to give you a super-brief update on what's going on with Tess's genetics.  

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Tags genetics, Baylor, USP7
1 Comment

#71: A Sherman Tank Instead of an Elevator

May 25, 2016

This week, a special report:  we're giving Tess an extra tight squeeze when we hug her. And we have a very good reason for this.

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Tags genetics, Baylor, USP7, Magel2
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#69: The Closest Match Yet

May 11, 2016

This week, Tess is a media star. She's all over the place. Which is nice. But there's a way that the snowballing effect helps her, and us, like never before.

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Tags genetics, USP7, media, Washington Post, Daily Mail, The Atlantic, Seattle Times, MyGene2, ABCNews, Texas Children's Blog
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#62: Parallel Stars

March 23, 2016

This week, we have a conversation we've been waiting to have for pretty much Tess's entire life. 

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Tags USP7, genetics, Baylor
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#61: Reach > Grasp

March 16, 2016

This week, Tess is getting ambitious. Every day we help her do more. But we're getting antsy for the real work to begin.  

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Tags advocacy, Baylor, genetics, NGLY1, Matt Wilsey
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#43: I Got the Toy Store Blues

November 11, 2015

This week, Tess turns six. Her classmates sing happy birthday, we celebrate her at home, and I take a shopping trip that turns out to be awful in ways that I never expected.        

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Tags global developmental delay, milestones, genetics
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#39: I Need Genetics For Dummies

October 14, 2015

This week, the next chapter in figuring out Tess's genetics. She's in the thick of it at kindergarten, we're moving forward with the crew at Baylor, and we have a mysterious plan B that's just getting underway.

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Tags genetics, Matt Might, repurposing, drug repurposing, USP7, MIT, Eric Lander, Robert Weinberg
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#37: Learning to Ruffle Feathers

September 30, 2015

This week, ruffling feathers. What that means. What we know we need to do now, to get stuff done and help Tess.  

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Tags Global Genes, genetics, rare disease, patient-driven, precision medicine, Matt Wilsey, Grace Wilsey Foundation, Perlstein Lab, Ethan Perlstein, Seth Mnookin
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#35: We Find An Answer

September 16, 2015

This week, the next chapter of Tess's genetic journey. We finally, finally get some answers.    

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Tags genetics, genome mapping, USP7
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#30: The Genetic Mystery Continues

August 12, 2015

This week, our next move in unpuzzling the genetics of Tess. We enroll with CrowdMed, to crowdsource it up. Will it give us some answers at last?   

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Tags genetics, genome, mutation, rare disease
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#28: The Dark Night of Uncertainty

July 29, 2015

This week, genetics. The mystery of Tess. Are we ready to give up?  

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Tags genetics, Seth Mnookin, Matt Might, Matt Wilsey, rare disease, orphan disease, Manton Center for Orphan Disease Research
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Start at the beginning.

I've been writing about Tess since February 2014.

If you want to read more about my life with Tess, head over to my personal blog, bobigelow.com, and start with the first post.


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