It's the end of an era. The final shift of someone who knows Tess and has helped her immeasurably. 

Nothing lasts forever, right? 

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

A week has just been 86'd. A big, big change of plans in our house for Tess.

We've been through this before.

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

B. It's the first letter of my first and last name. It's the name we all give to the plan that we pursue when the original plan isn't working out. And B also marks a new status for my partner Daniel and me, starting now. Hooray!

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

Two fans and a laptop. Tess discovers a new musical genre. What's the verdict?

We explore Philadelphia-based band Remember Sports.

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'm a year older. Blowing out the candles on this year's cake, what's on my mind?

Thanks to my wife, I was able to take some much needed time off. 

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 

Let's hop into the car and head out, shall we? We're going on a shopping trip. Let's find Tess some new shoes.

Picture Tess in the shoe store. There's a deep calm about her. 

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

Life with Tess can be pretty darn challenging sometimes. When things go south, there's one method we have that always makes everything better. It requires no equipment, it travels with us wherever we go, and it costs zero dollars.

Hayden Faith is Tess's Schaaf-Yang Syndrome sister. They even share a birthday! Hayden's folks Matt and Courtney Blickley have started a nonprofit to fund SYS research. Check out Faith for Hayden here:  https://faithforhayden.org/

So you or someone you love has been diagnosed with Hao-Fountain Syndrome. Now what?

It can definitely be overwhelming. But here are some resources. And some ways to get involved.  

If you or someone in your family has just been diagnosed with Hao-Fountain Syndrome or USP7, please join our private Facebook or Discord groups. Click below and then request to join the private group. 

Facebook: https://www.facebook.com/groups/969399453182041/

Discord: discord.gg/7UFUPAFs8K

To get connected to Dr. Schaaf, email Bo Bigelow here:  bo.bigelow@usp7.org

To join our registry, click here to get started:  https://usp7x.acrossmatrix.com/#/user-request

To donate to our biobank, email Bo Bigelow here:  bo.bigelow@usp7.org

Checks to our foundation should be made out to FOUNDATION FOR USP7 RELATED DISEASES and mailed here: 

FOUNDATION FOR USP7 RELATED DISEASES
11 Innkeepers Ln
Falmouth, ME  04105

A return to skiing. We heard about something amazing from Tess a week ago, and we had to see it for ourselves.

Do we send this thing back, or what?

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 

Tess hits the slopes for another season with Maine Adaptive, her ninth year of skiing. Only this time she decides to make a massive change.

When Tess lets you know what she wants, you'd better listen. 

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