June 16, 2023
We have a saying in our house. We talk about "the age of independence". And yes, there are some eyerolls from our kids, but we push them to do stuff for themselves.
A rare event. A solar eclipse in the United States. Where was Tess on that day, and what was she doing?
You're busy. Sometimes you think about how busy you were a year ago and think wistfully--man, that wasn't busy at all compared to now! But in spite of this busyness, there's something that's required from all Hao-Fountain patients.
Sometimes when you're on the road, your plans go out the window. You have only a fraction of the stuff you need. But something unexpected comes up. And you have to MacGyver a solution.
Tess has developed a new habit. It's about her breathing. And it seems like she may be trying to tell us something.
If you're like me, you're bombarded these days with articles all about the importance of regularly getting good sleep. My wife and I would do this if we could. But instead, we have children.
I have aged. Since the last time we were together, I've passed the half-century mark. And I have a few thoughts for ya.
Come spend a day on a snowy peak here in Maine. Come watch our Tess as she puts on her ski coat and hits the slopes once again.
Psst! Hey. You. Yeah. I'm talking to you. Can you help me? Why, and how, we need your help to keep the foundation and our mission afloat.
Seven men. On foot over 183 miles total. Nearly 300 kilometers. Deep in the heart of Texas.
An invitation from across the Atlantic. And a return after many years to a city west of here. The city where it all began.
The bedroom of your teenage child. It's a refuge. Sacred territory. Never to be breached, unless specifically invited inside.
Our sweet Tess returns to the emergency room, for the THIRD time in a month.
You're familiar with Sam-I-Am, probably. Tess definitely is. But there's a new book on our shelf that has become her favorite.
We're holding an event next year and we're inviting some of the greatest minds in science. Think Real Genius meets Midnight Madness.
How do people with autism see the world? And what can we do to help them soothe themselves when they're in distress or discomfort?
There's another candle on the cake. Let's celebrate with our T-Bird, as we do each November.
It's been a difficult week here in Maine. Tess may not grasp what's happened, but she knows something's different.
Hitting you with episode three about the meetup in the mountains. My wife and I are in Denver, Colorado for a USP7 conference and it's our mission to get scientists wound up about helping us cure this thing.
More about the roundtable in the Rockies. My wife and I are in Denver for a USP7 conference and we're having a sitdown with a bunch of brilliant scientists.
Restarting. Resetting. Getting things back on track with our first usp7 conference since 2019. This one had some developments that can only be described as seismic.
Heading to Denver this week for the first USP7 conference we've attended in four years. I'll give you a little preview of what we're going to be talking about.
Five years ago, Bo Bigelow quit his law job to stay home with his kids. Turns out his daughter Tess has special needs. She is almost entirely nonverbal and is only just beginning to walk at nearly age 6. She just started kindergarten, but functions at the level of a 1.5-year old. She's different. And now, so is everything else.
Follow their family's journey as they navigate Tess's relationship with her older brother, deal with school and special education, and try to solve the genetic mystery of Tess's ultra-rare disease.
It's time. It's time to take Tess out of the United States and into another country.