Info

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.
RSS Feed
Stronger Every Day: For Parents of Children with Rare Diseases
2024
October
September
August
July
June
May
April
March
February
January


2023
December
November
October
September
August
July
June
May
April
March
February
January


2022
December
November
October
September
August
July
June
May
April
March
February
January


2021
December
November
October
September
August
July
June
May
April
March
February
January


2020
December
November
October
September
August
July
June
May
April
March
February
January


2019
December
November
October
September
August
July
June
May
April
March
February
January


2018
December
November
October
September
August
July
June
May
April
March
February
January


2017
December
November
October
September
August
July
June
May
April
March
February
January


2016
December
November
October
September
August
July
June
May
April
March
February
January


2015
December
November
October
September
August
July
June
May
April
March
February
January


All Episodes
Archives
Now displaying: March, 2023
Mar 28, 2023

Tess heads to the eye doctor. For a lonnnnnng appointment.

How's this gonna go? 

Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 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

Mar 21, 2023

It's the end of an era. The final shift of someone who knows Tess and has helped her immeasurably. 

Nothing lasts forever, right? 

Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 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

Mar 15, 2023
Counting our chickens before they have hatched. Got an update for ya this week on how Tess fared with her recent bout with Covid
 
Sad Tess. 

Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 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

Mar 8, 2023

A week has just been 86'd. A big, big change of plans in our house for Tess.

We've been through this before.

Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 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

1