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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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Now displaying: April, 2022
SED 380: Shhhh 0
Apr 26, 2022
Let's take a field trip with Miss Tess, shall we? It's spring break, and she knows just the place she wants to go.

Où est la bibliothèque? 

Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/

Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

SED 379: Pickles 0
Apr 19, 2022

I like pickles. Pickled things of all sorts, but definitely your standard dill pickles in the jar. Key phrase being: in the jar.

Fun with Tess and hyperphagia. 

Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/

Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

SED 378: Tess Has a Passport 0
Apr 12, 2022

This is your captain speaking. We're gonna be cruising at 35,000 feet here. I note that today we're happy to welcome aboard Miss Tess Bigelow. She's been seated in a snacks and videos row.

Our trip to Germany is coming up. Number of times Tess has left the United States:  0. 

Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/

Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

SED 377: Four Seven 0
Apr 5, 2022

We're hitting the 5-year mark for our foundation. I'm running a virtual 5k in honor of Tess and the other patients, to fund our 2022 research grant. Please donate today--no amount is too small. You've been gracious in supporting our phenotyping study and our 2021 grant (both of which are funded and underway.) Thank you so much!
https://usp7.salsalabs.org/haowewalkhaowerun2022/p/bobigelowsteamtesspage

Tess Army! Who's up for a virtual 5k (walk or run) in the next 2 months? Join my team and help raise money for us. We need to raise funds for our 2022 grant, and YOU can help. Please click to join today! #TessArmy #USP7 https://usp7.salsalabs.org/haowewalkhaowerun2022/t/teamtess

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