Bo Bigelow

Working to cure our daughter Tess's rare disease, Hao-Fountain syndrome.

[Bo Bigelow @bobigelow]

Tess Army: we learned a TON from Dr. Schaaf’s phenotyping study. 🔥 Check it out and please RT. #USP7 #HaoFountainSyndrome

[Christian Schaaf @cpschaaf]

New insight on Hao-Fountain syndrome: clinical severity score, genotype-phenotype correlations and expansion of phenotypic spectrum. @FoundationUSP7 @bcmgenetics @bcmhouston @UniHeidelberg @uniklinik_hd
https://t.co/iFlQMvY15B

[Bo Bigelow @bobigelow]

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
https://t.co/xtocFBbFzP

[Bo Bigelow @bobigelow]

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

[Christian Schaaf @cpschaaf]

New insight on Hao-Fountain syndrome: clinical severity score, genotype-phenotype correlations and expansion of phenotypic spectrum. @FoundationUSP7 @bcmgenetics @bcmhouston @UniHeidelberg @uniklinik_hd
https://t.co/iFlQMvY15B

[Bo Bigelow @bobigelow]

@cpschaaf @FoundationUSP7 @bcmgenetics @bcmhouston @UniHeidelberg @uniklinik_hd This is so amazing, Christian! Congratulations to you and your team on this groundbreaking work - it makes a huge difference to those of us living with this disease and we are grateful to you.

[Bo Bigelow @bobigelow]

Honored to run with these men today in Houston. We were—and are—unstoppable. #runhou #runhouston #USP7 #HaoFountain @FoundationUSP7 @runforusp7

[Bo Bigelow @bobigelow]

It is ON tomorrow morning. #runhou #USP7 @FoundationUSP7

[Bo Bigelow @bobigelow]

My marathon teammates have arrived in Houston! It’s on! @FoundationUSP7 #runhou #HaoFountainSyndrome

[Bo Bigelow @bobigelow]

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! https://t.co/Uz4VpiEURQ #USP7 #HaoFountainSyndrome #runhou #runhouston

[Bo Bigelow @bobigelow]

@SierraJoseph15 @CoachJosephFB @fit_leaders Same here! Barely ran in December from the winter funk coming through our house, but back on it now. We can do this! Good luck on Sunday! #RunHou

[Bo Bigelow @bobigelow]

@WashUNeurosurg @WashUONR

[Bo Bigelow @bobigelow]

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." https://t.co/yxXspKNYrw @AlbertHKimMDPhD @WUSTLmed #USP7 #HaoFountainsyndrome @FoundationUSP7

[Bo Bigelow @bobigelow]

Remember Sports at SPACE, Portland, ME last night. Fantastic

[Bo Bigelow @bobigelow]

I'm outta here. Find me on Mastodon: @[email protected]

[Bo Bigelow @bobigelow]

Evals. Not our favorite, but they’re part of our lives. Click to listen to the latest ep of the pod. https://t.co/WSc0WD7p4r

[Bo Bigelow @bobigelow]

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 https://t.co/ePpW895p8m

[Bo Bigelow @bobigelow]

@allen_darren @RobAugustine7 @waynfletesports MPA says it’s based on size:

[Bo Bigelow @bobigelow]

@allen_darren

[Bo Bigelow @bobigelow]

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. https://t.co/zwXWkyuMwt

[Bo Bigelow @bobigelow]

@K_SalemOaks Thanks Kevin! Wish I could be there with you. Your message about 400 made my day. 😀