Working to cure our daughter Tess's rare disease, Hao-Fountain syndrome.
Joined June 2009
- Tweets 4,791
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- Followers 1,009
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543 Photos and videos
Pinned Tweet
15 Jan 2024
Tess Army: we learned a TON from Dr. Schaaf’s phenotyping study. 🔥 Check it out and please RT. #USP7 #HaoFountainSyndrome
15 Jan 2024
New insight on Hao-Fountain syndrome: clinical severity score, genotype-phenotype correlations and expansion of phenotypic spectrum. @FoundationUSP7 @bcmgenetics @bcmhouston @UniHeidelberg @uniklinik_hd
onlinelibrary.wiley.com/doi/…
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17 Jan 2024
Seven men. On foot over 183 miles total. Nearly 300 kilometers. Deep in the heart of Texas. Click to listen to my latest podcast episode. #runhou #runhouston #USP7 #HaoFountainSyndrome @runforusp7 @FoundationUSP7
portlandrootsmedia.com/stron…
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16 Jan 2024
Stuck here in Houston after the marathon, and I don’t even mind. I’m a fan of H-Town. The people here have been so lovely. #WorthIt #runhou #runhouston
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Bo Bigelow retweeted
15 Jan 2024
New insight on Hao-Fountain syndrome: clinical severity score, genotype-phenotype correlations and expansion of phenotypic spectrum. @FoundationUSP7 @bcmgenetics @bcmhouston @UniHeidelberg @uniklinik_hd
onlinelibrary.wiley.com/doi/…
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14 Jan 2024
Honored to run with these men today in Houston. We were—and are—unstoppable. #runhou #runhouston #USP7 #HaoFountain @FoundationUSP7 @runforusp7
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12 Jan 2024
My marathon teammates have arrived in Houston! It’s on! @FoundationUSP7 #runhou #HaoFountainSyndrome
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11 Jan 2024
I'm running the Houston Marathon on 1/14 with Olivier Emmenecker, whose daughter Zoe is Tess's USP7 sister over in France. Please donate today. Thank you! usp7.org/donate #USP7 #HaoFountainSyndrome #runhou #runhouston
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6 Dec 2023
Thrilled about this preprint article from Hao Chen & Albert Kim, MD, PhD about USP7 and Hao-Fountain syndrome! You guys had me at "a novel p53-independent ubiquitin signaling pathway." ncbi.nlm.nih.gov/pmc/article… @AlbertHKimMDPhD @WUSTLmed #USP7 #HaoFountainsyndrome @FoundationUSP7
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19 Nov 2022
Evals. Not our favorite, but they’re part of our lives. Click to listen to the latest ep of the pod. portlandrootsmedia.com/stron…
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8 Nov 2022
Tess is such a talker. Not with words exactly, but a complex system of sounds and gestures. And one thing that can sometimes cause us a bit of concern is this: when she clams up entirely. #nonverbal portlandrootsmedia.com/stron…
4 Oct 2022
Apple picking. It's not just for people who need to get out of the house with their toddlers. Click to listen to my latest podcast episode. portlandrootsmedia.com/stron…
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14 Sep 2022
Looking for great podcasts about rare disease? Look no further than these friends of mine. Subscribe and start listening. Please RT! @OnceUponAGene @BloodStreamInfo @sanathkr_ @JMGraglia @DenaTalksDNA @DNApodcast @KyleABryant @SeanBaumstark @21CenturyDads @K_SalemOaks
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14 Sep 2022
We've come a long way together, Tess Army. portlandrootsmedia.com/stron… Stay tuned through the end of this ep for an incredible surprise from my main man Daniel DeFabio.
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1 Sep 2022
Foundations often start small, with a few parents around a kitchen table. But they grow. And ours is growing now, thanks to a special tool. Do you want to know what the Matrix is? portlandrootsmedia.com/stron…
26 Jul 2022
Hey Joe, Avis thinks my wife rented a car in Illinois last January. She didn't. You guys have charged us over $2,300. I've called. I've written four letters. Always saying the same thing: YOU HAVE THE WRONG PERSON. What do I have to do to make this stop? @FerraroABG
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