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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: February, 2022
SED 371: An IEP Revelation 0
Feb 22, 2022

Another year, another IEP team meeting. Our Tess is in sixth grade, and we learned something new. Something that we shoulda known a long time ago.

Why isn’t there a SportsCenter-style clip show for the best IEP moments?

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/

SED 370: Start Here 0
Feb 16, 2022

Life with this disease can be pretty overwhelming for families. Especially on that day you first get your diagnosis. If that's you, and this is that day, you've come to the right place.

This episode is a great starting point if you or someone you love has just been diagnosed with Hao-Fountain Syndrome or USP7.

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/

If you or someone in your family has just been diagnosed with Hao-Fountain Syndrome or USP7, please join our private groups on Facebook or Discord. Click below and then request to join the private group.

Facebook: https://www.facebook.com/groups/969399453182041/

Discord: discord.gg/7UFUPAFs8K

Check out my YouTube Channel: https://www.youtube.com/bobigelow

Learn more about our life with Tess on my blog: http://www.portlandrootsmedia.com/stronger-every-day-blog-1

SED 369: Skis to the Kingdom - Part 2 of 2 0
Feb 8, 2022

We're on a mountainside. Tess is raring to go, to get going on skiing once again. Dressed and ready. How does she do?

This episode includes: a great escape, some laughs, and another installment of Where Does It Go?

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/

Join our Discord server, Rare and Relatable! We’re chatting on there most days, about all aspects of rare diseases and other types of disabilities. We’re having a LIVE event on Rare Disease Day, Feb 28th, at 12pm ET. Click here to join us on Discord: discord.gg/7UFUPAFs8K

SED 368: Skis to the Kingdom - Part 1 of 2 0
Feb 2, 2022
A snowstorm blankets Maine. And one of Tess's favorite places opens back up for business. 

Sit back and I'll tell you all about Tess skiing with Maine Adaptive, on a mountaintop.

Ever thwarted by car key gnomes? Yeah, me too. This week: a brand-new segment called WHERE DOES IT GO???

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/

Join our Discord server, Rare and Relatable! We’re chatting on there most days, about all aspects of rare diseases and other types of disabilities. We’re having a LIVE event on Rare Disease Day, Feb 28th, at 12pm ET. Click here to join us on Discord: discord.gg/7UFUPAFs8K

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