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Stronger Every Day: For Parents of Children with Rare Diseases

You're a parent or caretaker of someone with a rare disease. It's crazy hard, but you can handle all the challenges that come your way, and Bo Bigelow will show you how.  Bo Bigelow is the father and primary caretaker of Tess, age 14, who has a rare genetic disorder that causes nonverbal autism, communication disorders, and epilepsy. Bo is an award-winning speaker, writer, filmmaker, and advocate for people with disabilities. He is also a practicing disability-rights attorney. Whether speaking up for Tess's education, navigating appointments and insurance coverage, or simply making Tess seen and known, he's developed tons of actionable tips to help you crush it and get it all done, without losing your own sanity and identity.   Bo is a co-founder of DISORDER: The Rare Disease Film Festival and The Disorder Channel. Over the years, he's told Tess's story to NPR, NBC News, ABC News, The Washington Post, and The Atlantic.
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Stronger Every Day: For Parents of Children with Rare Diseases
2024
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Now displaying: January, 2024
Jan 30, 2024

We're basketball fanatics in our house. And when I say we, I'm including Tess. 

Jan 24, 2024

Psst! Hey. You. Yeah. I'm talking to you. Can you help me? 

Here's where to send folks to donate:
usp7.org/donate
 
 
Jan 17, 2024

Seven men. On foot over 183 miles total. Nearly 300 kilometers. Deep in the heart of Texas.

This marathon was to raise money for Hao-Fountain research. Thanks to all of you who've generously supported us so far. In case you haven't had a chance to donate yet, here's where you can do that: https://bit.ly/3vGHHIy

 

Jan 9, 2024

An invitation from across the Atlantic. And a return after many years to a city west of here. The city where it all began.

Jan 2, 2024

The bedroom of your teenage child. It's a refuge. Sacred territory. Never to be breached, unless specifically invited inside.

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