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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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All Episodes
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Now displaying: April, 2024
Apr 30, 2024

More stories from near the equator. Part 2 of 2 about our recent trip with Tess to Costa Rica. 

Apr 23, 2024

It's time. It's time to take Tess out of the United States and into another country.

Apr 11, 2024

We have a saying in our house. We talk about "the age of independence". And yes, there are some eyerolls from our kids, but we push them to do stuff for themselves.

Apr 9, 2024

A rare event. A solar eclipse in the United States. Where was Tess on that day, and what was she doing?

Apr 2, 2024
You're busy. Sometimes you think about how busy you were a year ago and think wistfully--man, that wasn't busy at all compared to now! But in spite of this busyness, there's something that's required from all Hao-Fountain patients. 
 
If you need to donate to our biorepository because you haven't yet, email me here: bo [dot] bigelow [at] gmail.com. 
 
Buzzy - personal vibrating ice pack for easier shots for kids. Order on Amazon here
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