Stronger Every Day: For Parents of Children with Rare Diseases

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.

We're basketball fanatics in our house. And when I say we, I'm including Tess. 

Psst! Hey. You. Yeah. I'm talking to you. Can you help me?  Here's where to send folks to donate: usp7.org/donate    

Seven men. On foot over 183 miles total. Nearly 300 kilometers. Deep in the heart of Texas. This marathon was to raise money for Hao-Fountain research. Thanks to all of you who've generously supported us so far. In case you haven't had a chance to donate yet, here's where you can do that:  https://bit.ly/3vGHHIy  

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.

Our sweet Tess returns to the emergency room, for the second time in a month. The latest in a long line of medical mysteries involving our girl.

What's a word you'd pretty much never use to describe Tess?

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.

An early morning scare with Tess. 

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.   

What if you only had about five words you could use? And you had almost no choice but to use only those five words to get what you wanted?

Think of our foundation as a car. The car is six years old. It has traveled many many miles and been all over the place. And we have just installed a turbo. Amber Freed is our foundation's new executive director. You can read her story here .  

If you're a pro athlete in any sport and you take growth hormone in any form, you're gonna get busted. It's considered doping. But here in our house, we give it to Tess every day. 

People are always asking me, how can I help you guys in your life with Tess? And honestly, the answer is sorta difficult to formulate. Today I'll explain. We need to ritualize chronic compassion. Click here to read Daniel's blog post. 

The fall semester of school is kicking off for Miss Tess today. She's excited, and so am I. It's a new day. My new band is called UNLESS PROVOKED . We like you.  Unless Provoked website Unless Provoked Instagram Unless Provoked Facebook Unless Provoked YouTube Get your t-shirt here .