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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
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All Episodes
Archives
Now displaying: November, 2023
Nov 28, 2023

We're holding an event next year and we're inviting some of the greatest minds in science. Think Real Genius meets Midnight Madness.

Nov 21, 2023
An early morning scare with Tess. 
Nov 15, 2023

How do people with autism see the world? And what can we do to help them soothe themselves when they're in distress or discomfort? 

Nov 8, 2023

There's another candle on the cake. Let's celebrate with our T-Bird, as we do each November.

Nov 1, 2023

It's been a difficult week here in Maine. Tess may not grasp what's happened, but she knows something's different. 

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