Stronger Every Day: For Parents of Children with Rare Diseases

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. 

SED 574: The Woods 13.01.2026 7:16 ↓

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

SED 573: Into the Woods 07.01.2026 9:10 ↓

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

SED 572: Holiday Break 30.12.2025 2:28 ↓

This week, we're away on a ski vacation as a family. Let's check in with Tess.  

SED 571: Waiting 24.12.2025 4:01 ↓

This week, we're on pins and needles, waiting for a very special milestone. 

SED 570: Still Ill 16.12.2025 5:22 ↓

This week, the illness continues, believe it or not. We'll check in on our girl. 

SED 569: The Cup Is Already Broken 09.12.2025 6:36 ↓

This week, someone in our house is considerably under the weather.

SED 568: Never Get a Car from GM and Other True Stories 02.12.2025 9:22 ↓

This week, got a few fun stories for ya. Vignettes, if you will.

SED 567: Thankful for Empatica and the Epimonitor 25.11.2025 3:58 ↓

This week, a nifty tech device gets strapped to Tess's wrist.

SED 566: Riding the Waves of Life 18.11.2025 5:05 ↓

This week, an emerging artist in Maine works with multiple media and begins an exhibition at a local gallery.

SED 565: Backseat Driver 11.11.2025 8:26 ↓

This week, in the backseat of a car in Maine, someone had something to say.

SED 564: Sixteen 05.11.2025 8:36 ↓

This week, this very day in fact, Tess is celebrating a special birthday. This is sixteen.