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Stronger Every Day: For Parents of Children with Rare Diseases
Stronger Every Day: For Parents of Children with Rare Diseases episodes
- 8 min
- SED 534: Tooth or Consequences
Today we're gonna talk about Miss Tess's recent visit to the dentist.
Many thanks to the New York Times for writing about dental patients with disabilities back in 2019, and NYU's new facility designed to help them: "Saving the Teeth of Patients with Special Needs," by Catherine St. Louis, 5/2/2019.
11 min - 8 min
- SED 532: More Talking Without Words
Today we're gonna talk more about the podcast The Telepathy Tapes and how it applies to our Tess.
12 min - SED 531: This Will Be Our Year
Today I'll be giving you an update on some of the thrilling developments of our foundation in our quest for a cure for Tess and the other patients.
10 min - SED 530: Dunk You Very Much
Today I'll be telling you more about Tess playing basketball, and a new development for her on the court.
9 min - SED 529: Talking Without Words
Today I'm talking about the ability to read minds. And how it might affect our relationship with Tess.
I've been listening to The Telepathy Tapes, a podcast by Ky Dickens about how certain nonspeaking people with autism have displayed the ability to read minds.
11 min - SED 528: Pizza Vacuum
Today we're talking about an irksome behavior of Tess's, something that's happening more and more frequently, and what it could mean.
10 min - SED 527: Why I'm Changing the Show Back
Last summer, I made a big change to this show. Now, I'm changing it back. In this episode, I share why—and how a recent ski day with Tess, in zero-degree weather, reminded me of something important. Tune in to hear the full story.
11 min - Stronger Every Season: A Caregiver's Mindset Shift
Stronger Every Season: A Caregiver's Mindset Shift
What if the way you think about aging is making caregiving even harder?
If you're a caregiver, you know the toll it can take on your body—aching muscles, exhaustion, and the creeping fear that one day you just won't be able to do it anymore. But what if there's a different way to look at it? A mindset shift that keeps you strong, capable, and even optimistic?
- Discover how changing your perspective on physical decline can make a huge difference in caregiving.
- Learn how building a personal 'support team' can keep you strong and resilient.
- Get inspired by a powerful reframe that turns dread into determination.
Hit play now to hear a short but game-changing episode about staying strong, shifting your mindset, and bringing the heat—season after season.
6 min
About Stronger Every Day: For Parents of Children with Rare Diseases
From the publisher's feed
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.