Bo Bigelow

Stronger Every Day: For Parents of Children with Rare Diseases

Kids EN ↓ 605 episodes

This show tells stories about life with Tess, age 15, who has a rare genetic disorder called Hao-Fountain syndrome, Bo Bigelow is Tess's father and primary caretaker. Her disorder 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. 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.

Author

Bo Bigelow

Episodes

SED 424: B 28.02.2023 4:58

B. It's the first letter of my first and last name. It's the name we all give to the plan that we pursue when the original plan isn't working out. And B also marks a new status for my partner Daniel and me, starting now. Hooray! 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 v...

SED 423: Remember Sports 21.02.2023 7:47

Two fans and a laptop. Tess discovers a new musical genre. What's the verdict? We explore Philadelphia-based band Remember Sports. 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 Disord...

SED 422: A Million Times Better Than Stuff 14.02.2023 7:24

I'm a year older . Blowing out the candles on this year's cake, what's on my mind? Thanks to my wife, I was able to take some much needed time off. 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...

SED 421: Oh Say Can You See 07.02.2023 10:07

CVI stands for Cortical Visual Impairment . Tess has it, as do many people with Hao-Fountain Syndrome. But did you know that there's something you can do about CVI ? What can Tess see ? 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. Availabl...

SED 420: Nu Shooz 01.02.2023 7:47

Let's hop into the car and head out , shall we? We're going on a shopping trip . Let's find Tess some new shoes . Picture Tess in the shoe store. There's a deep calm about her. 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...

SED 419: Tess Knows How to Deal 24.01.2023 7:52

Life with Tess can be pretty darn challenging sometimes. When things go south, there's one method we have that always makes everything better . It requires no equipment, it travels with us wherever we go, and it costs zero dollars. Hayden Faith is Tess's Schaaf-Yang Syndrome sister. They even share a birthday! Hayden's folks Matt and Courtney Blickley have started a nonprofit to fund SYS research....

SED 418: Start Here 17.01.2023 10:46

So you or someone you love has been diagnosed with Hao-Fountain Syndrome. Now what? It can definitely be overwhelming. But here are some resources . And some ways to get involved . If you or someone in your family has just been diagnosed with Hao-Fountain Syndrome or USP7, please join our private Facebook or Discord groups. Click below and then request to join the private group. Facebook : http...

SED 417: The Box on Our Doorstep 10.01.2023 9:34

A return to skiing . We heard about something amazing from Tess a week ago, and we had to see it for ourselves . Do we send this thing back , or what? 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 Amaz...

SED 416: Slide Slide Slippity Slide 03.01.2023 10:10

Tess hits the slopes for another season with Maine Adaptive, her ninth year of skiing. Only this time she decides to make a massive change . When Tess lets you know what she wants, you'd better listen . 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 p...

SED 415: Have Sequins, Will Travel 28.12.2022 4:55

The mud room. It's our point of departure when we leave our house. And in that room, post-Christmas, Tess unleashes a neat-o surprise. Tess knows. 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...

SED 414: Fidget 20.12.2022 6:33

Certain handheld objects give Tess a sense of peace. They keep her from getting bored . The wonderful world of fidgets . Where can I get more of these? 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 Amaz...

SED 413: Germany Part 3 13.12.2022 13:20

The phenotyping study begins for our girl in Germany. How does Miss Tess do? Wrapping up a three-part series about our recent trip. I share tips and tricks! #TravelingWithAutism Special shout-out to Gretchen McCulloch and Lauren Gawne , hosts of the great linguistics podcast Lingthusiasm , which totally saved me while I was in the hospital with Tess. Stronger Every Day is sponsored by The Disorde...

SED 412: Germany Part 2 05.12.2022 14:46

We explore Heidelberg , getting some z's but not a lot. And we finally meet up with the scientist who knows more about Hao-Fountain than anyone else. More about our recent trip to Germany for the USP7 phenotyping study. #TravelingWithAutism 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 , in...

SED 411: Germany Part 1 30.11.2022 15:01

Tess takes her first voyage across the Atlantic. At long last, we begin our trip to Germany for the phenotyping study. Two words: Jet. Lag. 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...

SED 410: A Crucial Waypoint 19.11.2022 5:50

Germany, take two . Let's go see Dr. Schaaf . Let's try this again . 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://w...

SED 409: Evaluation Exasperation 15.11.2022 8:20

Evaluations . They're a huge part of our life with Tess. They aren't really fun . If you're doing a questionnaire about your kid--to get services, Medicaid, IEP stuff-- I'm with you . 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 f...

SED 408: Thirteen 08.11.2022 6:03

We have a birthday girl in the house. This week, Tess turns the big one-three . It's been quite a ride so far with this gal. 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...

SED 407: Tess Clams Up 01.11.2022 8:33

Tess is such a talker . Not with words exactly, but a complex system of sounds and gestures . And one thing that can sometimes cause us a bit of concern is this: when she clams up entirely . What does it mean when Tess is quiet ? 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 , includ...

SED 406: Bat-Signal Answered 25.10.2022 7:22

A call for help. A bat-signal in the night sky of life with a rare disease. One man sees the signal. And he answers . Solving the toothbrush conundrum . 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...

SED 405: Tess and a Friend Conspire 18.10.2022 4:47

What is Tess's favorite item from the lavatory? Raise your hand if you think you know the answer. An update on life with our new puppy Penny . 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...

SED 404: We Can Handle an IEP 11.10.2022 7:29

It's time once again for the great powwow among experts to work on Tess's education. I'm talking, of course, about her IEP . We've been through this a few times now. It helps that we have a dream team . 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 po...

SED 403: Being Seen 04.10.2022 5:51

Gather round . I want to tell you a story about someone who really sees Tess. Tess's cousin is deeply interested in helping her . 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 Diso...

SED 402: A Food Tess Won't Eat 27.09.2022 6:37

Apple picking . It's not just for people who need to get out of the house with their toddlers . A fun surprise in the pumpkin patch. 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 D...

SED 401: Calendar Invites 20.09.2022 9:27

Calendar invites . Rare parents get a lot of 'em. And we pretty much have to click yes every single time. Mindset is key. 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 Cha...

SED 400: Four Hundred 13.09.2022 14:33

We've come a long way together , Tess Army. Stay tuned through the end of this ep for an incredible surprise from my main man Daniel DeFabio . 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...