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Stronger Every Day: For Parents of Children with Rare Diseases
Stronger Every Day: For Parents of Children with Rare Diseases episodes
- 4 min
- SED 464: Let's Do Everything and Nothing
You're familiar with Sam-I-Am, probably. Tess definitely is. But there's a new book on our shelf that has become her favorite.
6 min - SED 463: Real Genius Meets Midnight Madness
We're holding an event next year and we're inviting some of the greatest minds in science. Think Real Genius meets Midnight Madness.
11 min - 17 min
- SED 461: Soothe Yourself
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?
10 min - SED 460: Fourteen
There's another candle on the cake. Let's celebrate with our T-Bird, as we do each November.
6 min - SED 459: Lewiston
It's been a difficult week here in Maine. Tess may not grasp what's happened, but she knows something's different.
7 min - SED 458: Conference in Denver Pt 3
Hitting you with episode three about the meetup in the mountains. My wife and I are in Denver, Colorado for a USP7 conference and it's our mission to get scientists wound up about helping us cure this thing.
9 min - SED 457: Conference in Denver Pt 2
More about the roundtable in the Rockies. My wife and I are in Denver for a USP7 conference and we're having a sitdown with a bunch of brilliant scientists.
10 min - SED 456: Conference in Denver
Restarting. Resetting. Getting things back on track with our first usp7 conference since 2019. This one had some developments that can only be described as seismic.
13 min
About Stronger Every Day: For Parents of Children with Rare Diseases
From the publisher's feed
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.