New to the show and not sure where to begin? I gotcha. Check out the Top 5 Most Downloaded Episodes Ever.
My blog about our life with Tess
More information about Hao-Fountain Syndrome or USP7
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.
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.
Tess has come a long way through physical therapy. Learning to walk. Loosening her upper body and reaching upwards over time. Going up and down stairs. But there's one thing she just won't do.
New to the show and not sure where to begin? I gotcha. Check out the Top 5 Most Downloaded Episodes Ever.
My blog about our life with Tess
More information about Hao-Fountain Syndrome or USP7
Tess is out of school for the summer. Let's go do something fun with our girl.
New to the show and not sure where to begin? I gotcha. Check out the Top 5 Most Downloaded Episodes Ever.
My blog about our life with Tess
More information about Hao-Fountain Syndrome or USP7
It is our long-awaited week off in the summer. It's our turn at the island house we share with my wife's siblings. And just about every moment Tess is trying to tell us something very specific.
New to the show and not sure where to begin? I gotcha. Check out the Top 5 Most Downloaded Episodes Ever.
My blog about our life with Tess
More information about Hao-Fountain Syndrome or USP7
We're concluding our series about travel with our girl. She attends a party, tries to sleep, and at the end of it all gets back in the car.
New to the show and not sure where to begin? I gotcha. Check out the Top 5 Most Downloaded Episodes Ever.
My blog about our life with Tess
More information about Hao-Fountain Syndrome or USP7
Over the years, we've learned about what works when we travel with Tess. We're still learning. She shows us new ideas all the time. And this voyage is no exception.
New to the show and not sure where to begin? I gotcha. Check out the Top 5 Most Downloaded Episodes Ever.
My blog about our life with Tess
More information about Hao-Fountain Syndrome or USP7
Along the highways and byways, there are quagmires wherever you look. The filthy bathroom in Hampton, New Hampshire. The police speed trap in Chicopee, Mass. And heck, there's an entire stretch of over 130 miles that couldn't be less friendly to our Tess.
Our journey to upstate New York begins.
Rest stops between Portland, ME and Skaneateles, NY
On this road trip, I'll definitely be playing Eagle Eye in the car. It's a highway travel game I invented. The cost: $0.00. Put down your phone and play too: https://www.portlandrootsmedia.com/eagleeye
New to the show and not sure where to begin? I gotcha. Check out the Top 5 Most Downloaded Episodes Ever.
My blog about our life with Tess
More information about Hao-Fountain Syndrome or USP7
It's 448 miles to Syracuse, we got a full tank of gas, half a pack of Larabars, it's dark...and we're wearing sunglasses. Hit it.
What's the difference between a trip and a vacation? And which one will this voyage be?
On this road trip, I'll definitely be playing Eagle Eye in the car. It's a highway travel game I invented. The cost: $0.00. Put down your phone and play too. https://www.portlandrootsmedia.com/eagleeye
This episode is decaffeinated, much to our chagrin. And a small creature will make an appearance.
ICYMI: last week's episode, SED 441, "Tess's Power Plant," is available here.
New to the show and not sure where to begin? I gotcha. Check out the Top 5 Most Downloaded Episodes Ever.
My blog about our life with Tess
More information about Hao-Fountain Syndrome or USP7
With five minutes before go time, Tess makes a move. And all hell breaks loose.
On the road with the lad. A special trip that I took this week.
Tess is ready to eat. I don't know what time it is, but that statement is true regardless of day or time.
Check out my blog post about Tess's diet: "Here's what we feed Tess. Her diet seems to help with autism, intellectual disability, GI issues, and her speech disorder."
Tess's hyperphagia makes an appearance at a birthday party. No zone or man-to-man defense can stop her.
Certain items have meaning for Tess. They are positively loaded with meaning, so much so that they're like full paragraphs for her.
Checking in with Tess and communication.
You unfortunately hear from time to time about bullying in schools. But one thing you don't hear enough about are the anti-bullies. The people working, day after day, to prevent bullying.
The Cromwell Center of Maine is doing super important work.
Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/
Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K
I haven't done this in a while, but I am calling upon you, Tess Army. I need you to do something for me.
Help us get more patients. You can do it.
Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/
Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K