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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: July, 2023
Jul 27, 2023

We're concluding our series about travel with our girl. She attends a party, tries to sleep, and at the end of it all gets back in the car.

New to the show and not sure where to begin? I gotcha. Check out the Top 5 Most Downloaded Episodes Ever.  

My blog about our life with Tess

More information about Hao-Fountain Syndrome or USP7

 
Jul 25, 2023

Over the years, we've learned about what works when we travel with Tess. We're still learning. She shows us new ideas all the time. And this voyage is no exception.

New to the show and not sure where to begin? I gotcha. Check out the Top 5 Most Downloaded Episodes Ever.  

My blog about our life with Tess

More information about Hao-Fountain Syndrome or USP7

 
Jul 18, 2023

Along the highways and byways, there are quagmires wherever you look. The filthy bathroom in Hampton, New Hampshire. The police speed trap in Chicopee, Mass. And heck, there's an entire stretch of over 130 miles that couldn't be less friendly to our Tess.

Our journey to upstate New York begins. 

Rest stops between Portland, ME and Skaneateles, NY

On this road trip, I'll definitely be playing Eagle Eye in the car. It's a highway travel game I invented. The cost: $0.00. Put down your phone and play too: https://www.portlandrootsmedia.com/eagleeye

New to the show and not sure where to begin? I gotcha. Check out the Top 5 Most Downloaded Episodes Ever.  

My blog about our life with Tess

More information about Hao-Fountain Syndrome or USP7

Jul 11, 2023

It's 448 miles to Syracuse, we got a full tank of gas, half a pack of Larabars, it's dark...and we're wearing sunglasses. Hit it.

What's the difference between a trip and a vacation? And which one will this voyage be? 

On this road trip, I'll definitely be playing Eagle Eye in the car. It's a highway travel game I invented. The cost: $0.00. Put down your phone and play too. https://www.portlandrootsmedia.com/eagleeye 

 

 

 

 

Jul 4, 2023

This episode is decaffeinated, much to our chagrin. And a small creature will make an appearance. 

ICYMI:  last week's episode, SED 441, "Tess's Power Plant," is available here.

New to the show and not sure where to begin? I gotcha. Check out the Top 5 Most Downloaded Episodes Ever.  

My blog about our life with Tess

More information about Hao-Fountain Syndrome or USP7

 

 

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