Stronger Every Day: For Parents of Children with Rare Diseases

SED 599: Awake and Combative 07.07.2026 16:57 ↓

This week, we're in Puerto Rico, where Tess has had a seizure and ambulance ride.

SED 598: Four in the Morning in Fajardo 30.06.2026 14:12 ↓

This week, we are in Fajardo, Puerto Rico, where Tess meets a friend while wading in a shallow pool, and they both seem to know something that we don't.

SED 597: The Pineapple Didn't Do It 22.06.2026 4:04 ↓

This week, the aftermath of Tess's medical event at school.

SED 596: Super Grateful This Thing Sucks 18.06.2026 7:39 ↓

This week, another close call with Tess, this time at school.

SED 595: The Case of the Strong Grip 10.06.2026 11:11 ↓

This week, detectives are on the case. What happens when the obvious answer to a mystery turns out to be wrong?

SED 594: One Stop Shop 02.06.2026 12:33 ↓

This week, what if there could be a one stop shop for medicine?

SED 593: I Like That 26.05.2026 7:16 ↓

This week, Tess participates in a meeting about her future and shares her thoughts at a critical juncture.

SED 592: Dad Camp 18.05.2026 11:00 ↓

This week, summer lasts about three months and Tess has summer school for 18 days of it.

SED 591: What Happens When the Pastry Department Never Opens 12.05.2026 16:01 ↓

This week, there's a bakery inside your body, and Tess's bakery has a staffing problem.

SED 590: A Hitch in Her Step 06.05.2026 5:13 ↓

This week, a mysterious hitch in Tess's step has us thinking of a rough time from long ago. 

SED 589: IEP Meeting - All About the Coffee part 2 28.04.2026 8:27 ↓

This week, the long-awaited part two about Tess's IEP for this year.

SED 588: Beach Plus Pica 21.04.2026 6:52 ↓

This week, Tess goes somewhere she hasn't been in many years, a place we've avoided for a very good reason.

SED 587: You Answered - A Project Centauri Update 14.04.2026 9:06 ↓

This week, I called, you answered. An update on Project Centauri, our effort to get 100 new families on Matrix.

SED 586: A Critical Mistake 07.04.2026 6:32 ↓

This week, a critical mistake lands Tess back in the emergency room.

SED 585: How We're Using AI to Help Cure our Rare Disease 31.03.2026 9:55 ↓

This week, I want to tell you about how I'm using AI to help with our foundation's work in our quest for a cure or treatment for Hao-Fountain syndrome. 

SED 584: Tuning In 25.03.2026 5:25 ↓

This week, we're delighted as Tess expands her video library into uncharted territory.

SED 583: Project Centauri 17.03.2026 8:20 ↓

This week, we're launching a new initiative that's gonna make our Hao-Fountain crew a million times stronger. 

SED 582: Tess Skips Breakfast 11.03.2026 10:05 ↓

This week, it's an earth metal, a chemical element, a thing you can use when making fireworks. And hey, maybe we should drink it.

SED 581: IEP Meeting - All About the Coffee part 1 03.03.2026 8:41 ↓

This week, the three letters that have often invoked dread in many a parent are instead making me feel positively gleeful about our girl. 

SED 580: Mystery Tess 24.02.2026 4:53 ↓

This week, we're working hard to manage some new factors in Tess's life.

SED 579: Get On Matrix Already 11.02.2026 10:11 ↓

This week, we know what we need in order to get to a cure or treatment for Hao-Fountain syndrome. And you can help. Get started with Matrix:  https://usp7x.acrossmatrix.com/en-US/#/user-request

SED 578: Get Well Soon 11.02.2026 5:41 ↓

This week, a couple fun updates about Tess's re-entry after her seizure.

SED 577: Many Moons 03.02.2026 9:19 ↓

This week, Tess has had a life-threatening event, at a time when we're very far from the closest medical facility. Part 5 of 5.

SED 576: A New Record 27.01.2026 10:01 ↓

This week, Tess has had a life-threatening event, at a time when we're very far from the closest medical facility. Part 4 of 5.

SED 575: Shark Fins 21.01.2026 8:17 ↓

This week, Tess has had a life-threatening event, at a time when we're very far from the closest medical facility. Part 3 of 5.