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Stronger Every Day: For Parents of Children with Rare Diseases

This show tells stories about life with Tess, age 15, who has a rare genetic disorder called Hao-Fountain syndrome, Bo Bigelow is Tess's father and primary caretaker. Her disorder 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.   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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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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