This week, we say goodbye to a dear member of our family.When is a service dog not a service dog? Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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 &amp; 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

This week, we say goodbye to a dear member of our family.When is a service dog not a service dog? Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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. <a href="https://www.thedisordercollection.com/" rel="nofollow" target="_blank">https://www.thedisordercollection.com/</a>Are you on our Discord server RARE &amp; 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: <a href="http://discord.gg/7UFUPAFs8K" rel="nofollow" target="_blank">discord.gg/7UFUPAFs8K</a>

#391: Marley

Our family is totally packed, ready to jet off to Germany for the phenotyping study and a massive family conference. And at the eleventh hour, there's a slight curveball. A large disappointment, but many many silver linings. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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 &amp; 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

Our family is totally packed, ready to jet off to Germany for the phenotyping study and a massive family conference. And at the eleventh hour, there's a slight curveball. A large disappointment, but many many silver linings. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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. <a href="https://www.thedisordercollection.com/" rel="nofollow" target="_blank">https://www.thedisordercollection.com/</a>Are you on our Discord server RARE &amp; 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: <a href="http://discord.gg/7UFUPAFs8K" rel="nofollow" target="_blank">discord.gg/7UFUPAFs8K</a>

#390: Positive

It comes around every year. At the very beginning of summer, and also at the end. It strikes fear into the hearts of parents everywhere. The blank space in the calendar.What can Tess do when she's not in school? Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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 &amp; 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

It comes around every year. At the very beginning of summer, and also at the end. It strikes fear into the hearts of parents everywhere. The blank space in the calendar.What can Tess do when she's not in school? Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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. <a href="https://www.thedisordercollection.com/" rel="nofollow" target="_blank">https://www.thedisordercollection.com/</a>Are you on our Discord server RARE &amp; 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: <a href="http://discord.gg/7UFUPAFs8K" rel="nofollow" target="_blank">discord.gg/7UFUPAFs8K</a>

#389: Unscheduled

The weather in Maine has been all over the place lately. One day it's in the 80s, next day you're putting on a fleece vest and wool socks. Let me tell you about some quality time I had with Tess one rainy day recently.Kick off your shoes for a minute and watch the rain with Tess and me. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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 &amp; 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

The weather in Maine has been all over the place lately. One day it's in the 80s, next day you're putting on a fleece vest and wool socks. Let me tell you about some quality time I had with Tess one rainy day recently.Kick off your shoes for a minute and watch the rain with Tess and me. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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. <a href="https://www.thedisordercollection.com/" rel="nofollow" target="_blank">https://www.thedisordercollection.com/</a>Are you on our Discord server RARE &amp; 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: <a href="http://discord.gg/7UFUPAFs8K" rel="nofollow" target="_blank">discord.gg/7UFUPAFs8K</a>

#388: The Rain Song

Does the word travel instill fear in you? Do you wish you could benefit from the brilliance of others who have hacks for traveling? If so, you're in luck. This week: more travel hacks for ya. More tips for your voyages.Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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 &amp; 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

Does the word travel instill fear in you? Do you wish you could benefit from the brilliance of others who have hacks for traveling? If so, you're in luck. This week: more travel hacks for ya. More tips for your voyages.Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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. <a href="https://www.thedisordercollection.com/" rel="nofollow" target="_blank">https://www.thedisordercollection.com/</a>Are you on our Discord server RARE &amp; 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: <a href="http://discord.gg/7UFUPAFs8K" rel="nofollow" target="_blank">discord.gg/7UFUPAFs8K</a>

#387: Travel Hacks - Part 2 of 2

Travel. Remember that? Been a while since we went anywhere, but I have some favorite hacks that have helped our family in voyages past, and I'd love to share them with you. Skip. The. Line. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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 &amp; 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

Travel. Remember that? Been a while since we went anywhere, but I have some favorite hacks that have helped our family in voyages past, and I'd love to share them with you. Skip. The. Line. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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. <a href="https://www.thedisordercollection.com/" rel="nofollow" target="_blank">https://www.thedisordercollection.com/</a>Are you on our Discord server RARE &amp; 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: <a href="http://discord.gg/7UFUPAFs8K" rel="nofollow" target="_blank">discord.gg/7UFUPAFs8K</a>

#386: Travel Hacks - Part 1 of 2

On this holiday weekend, something extraordinary happened with our Tess. I wish you coulda seen it. Tess's pain threshold is something else. We think it could be part of her genetic disease, Hao-Fountain Syndrome. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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 &amp; 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

On this holiday weekend, something extraordinary happened with our Tess. I wish you coulda seen it. Tess's pain threshold is something else. We think it could be part of her genetic disease, Hao-Fountain Syndrome. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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. <a href="https://www.thedisordercollection.com/" rel="nofollow" target="_blank">https://www.thedisordercollection.com/</a>Are you on our Discord server RARE &amp; 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: <a href="http://discord.gg/7UFUPAFs8K" rel="nofollow" target="_blank">discord.gg/7UFUPAFs8K</a>

#385: The Reaction 

We head to Germany in a month. We're trying to plan for everything. And there's one potential outcome that has us a bit concerned.What would it look like to keep Tess in a hotel room--in Europe, not the US--for a week or more?Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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 &amp; 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

We head to Germany in a month. We're trying to plan for everything. And there's one potential outcome that has us a bit concerned.What would it look like to keep Tess in a hotel room--in Europe, not the US--for a week or more?Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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. <a href="https://www.thedisordercollection.com/" rel="nofollow" target="_blank">https://www.thedisordercollection.com/</a>Are you on our Discord server RARE &amp; 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: <a href="http://discord.gg/7UFUPAFs8K" rel="nofollow" target="_blank">discord.gg/7UFUPAFs8K</a>

#384: Prepping for an Extended Stay

There's not a parent alive who doesn't wistfully talk about the days when their kid used to nap. All the laundry that they used to be able to do, the household chores, et cetera. This week, Tess hit the hay in the middle of the day for the first time in many years. What effect does the COVID booster have on our Tess? Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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 &amp; 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

There's not a parent alive who doesn't wistfully talk about the days when their kid used to nap. All the laundry that they used to be able to do, the household chores, et cetera. This week, Tess hit the hay in the middle of the day for the first time in many years. What effect does the COVID booster have on our Tess? Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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. <a href="https://www.thedisordercollection.com/" rel="nofollow" target="_blank">https://www.thedisordercollection.com/</a>Are you on our Discord server RARE &amp; 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: <a href="http://discord.gg/7UFUPAFs8K" rel="nofollow" target="_blank">discord.gg/7UFUPAFs8K</a>

#383: Sleepytime T

If you access the American health care system 40-50 times in a year, you're going to have to deal with some nonsense when it comes to insurance companies.Up until recently, I woulda said I'd seen it all. But now our insurance company has created an issue I've never witnessed before.   Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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 &amp; 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

If you access the American health care system 40-50 times in a year, you're going to have to deal with some nonsense when it comes to insurance companies.Up until recently, I woulda said I'd seen it all. But now our insurance company has created an issue I've never witnessed before. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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. <a href="https://www.thedisordercollection.com/" rel="nofollow" target="_blank">https://www.thedisordercollection.com/</a>Are you on our Discord server RARE &amp; 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: <a href="http://discord.gg/7UFUPAFs8K" rel="nofollow" target="_blank">discord.gg/7UFUPAFs8K</a>

#382: Thanks for Thinking of Me but I Already Have a Job

I quit my law job to be at home with my kids. Turns out our daughter Tess has a rare genetic disorder called Hao-Fountain Syndrome, or USP7. She's different. And now, so is everything else. #USP7 #HaoFountainSyndrome #autism

Did you know that there are five seasons in Maine? There are. This one, the one after winter and before spring, is called mud season. It's a great time to take Tess shopping for summer clothes.Spoiler alert: Tess likes shopping. Still not a fan of waiting rooms, though. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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 &amp; 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

Did you know that there are five seasons in Maine? There are. This one, the one after winter and before spring, is called mud season. It's a great time to take Tess shopping for summer clothes.Spoiler alert: Tess likes shopping. Still not a fan of waiting rooms, though. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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. <a href="https://www.thedisordercollection.com/" rel="nofollow" target="_blank">https://www.thedisordercollection.com/</a>Are you on our Discord server RARE &amp; 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: <a href="http://discord.gg/7UFUPAFs8K" rel="nofollow" target="_blank">discord.gg/7UFUPAFs8K</a>

#381: Decked Out

Let's take a field trip with Miss Tess, shall we? It's spring break, and she knows just the place she wants to go.Où est la bibliothèque? Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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 &amp; 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 take a field trip with Miss Tess, shall we? It's spring break, and she knows just the place she wants to go.Où est la bibliothèque? Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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. <a href="https://www.thedisordercollection.com/" rel="nofollow" target="_blank">https://www.thedisordercollection.com/</a>Are you on our Discord server RARE &amp; 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: <a href="http://discord.gg/7UFUPAFs8K" rel="nofollow" target="_blank">discord.gg/7UFUPAFs8K</a>

#380: Shhhh

I like pickles. Pickled things of all sorts, but definitely your standard dill pickles in the jar. Key phrase being: in the jar.Fun with Tess and hyperphagia. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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 &amp; 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 like pickles. Pickled things of all sorts, but definitely your standard dill pickles in the jar. Key phrase being: in the jar.Fun with Tess and hyperphagia. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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. <a href="https://www.thedisordercollection.com/" rel="nofollow" target="_blank">https://www.thedisordercollection.com/</a>Are you on our Discord server RARE &amp; 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: <a href="http://discord.gg/7UFUPAFs8K" rel="nofollow" target="_blank">discord.gg/7UFUPAFs8K</a>

#379: Pickles 

This is your captain speaking. We're gonna be cruising at 35,000 feet here. I note that today we're happy to welcome aboard Miss Tess Bigelow. She's been seated in a snacks and videos row.Our trip to Germany is coming up. Number of times Tess has left the United States:  0. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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 &amp; 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

This is your captain speaking. We're gonna be cruising at 35,000 feet here. I note that today we're happy to welcome aboard Miss Tess Bigelow. She's been seated in a snacks and videos row.Our trip to Germany is coming up. Number of times Tess has left the United States:  0. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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. <a href="https://www.thedisordercollection.com/" rel="nofollow" target="_blank">https://www.thedisordercollection.com/</a>Are you on our Discord server RARE &amp; 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: <a href="http://discord.gg/7UFUPAFs8K" rel="nofollow" target="_blank">discord.gg/7UFUPAFs8K</a>

#378: Tess Has a Passport

Four parents hatched a plan in the state of Texas in 2017. We've come a long way since then. And we need your help this week.We're hitting the 5-year mark for our foundation. I'm running a virtual 5k in honor of Tess and the other patients, to fund our 2022 research grant. Please donate today--no amount is too small. You've been gracious in supporting our phenotyping study and our 2021 grant (both of which are funded and underway.) Thank you so much!https://usp7.salsalabs.org/haowewalkhaowerun2022/p/bobigelowsteamtesspageTess Army! Who's up for a virtual 5k (walk or run) in the next 2 months? Join my team and help raise money for us. We need to raise funds for our 2022 grant, and YOU can help. Please click to join today! #TessArmy #USP7 https://usp7.salsalabs.org/haowewalkhaowerun2022/t/teamtess

Four parents hatched a plan in the state of Texas in 2017. We've come a long way since then. And we need your help this week.We're hitting the 5-year mark for our foundation. I'm running a virtual 5k in honor of Tess and the other patients, to fund our 2022 research grant. Please donate today--no amount is too small. You've been gracious in supporting our phenotyping study and our 2021 grant (both of which are funded and underway.) Thank you so much! <a href="https://usp7.salsalabs.org/haowewalkhaowerun2022/p/bobigelowsteamtesspage" rel="nofollow" target="_blank">https://usp7.salsalabs.org/haowewalkhaowerun2022/p/bobigelowsteamtesspage</a>Tess Army! Who's up for a virtual 5k (walk or run) in the next 2 months? Join my team and help raise money for us. We need to raise funds for our 2022 grant, and YOU can help. Please click to join today! #TessArmy #USP7 <a href="https://usp7.salsalabs.org/haowewalkhaowerun2022/t/teamtess" rel="nofollow" target="_blank">https://usp7.salsalabs.org/haowewalkhaowerun2022/t/teamtess</a>

#377: Four Seven 

Let's check in with the T-Bird and our new pup. How goes it so far?Tess and Penny are getting to know each other. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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 &amp; RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. Click here to join: discord.gg/7UFUPAFs8K

Let's check in with the T-Bird and our new pup. How goes it so far?Tess and Penny are getting to know each other. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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. <a href="https://www.thedisordercollection.com/" rel="nofollow" target="_blank">https://www.thedisordercollection.com/</a>Are you on our Discord server RARE &amp; RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. Click here to join: <a href="http://discord.gg/7UFUPAFs8K" rel="nofollow" target="_blank">discord.gg/7UFUPAFs8K</a>

#376: Laugh It Up, Fuzzball 

Someone new has joined our family. She's about ankle height, has boundless energy, and is slowly making friends with Tess.Tess loves dogs. Well, maybe not all dogs. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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 &amp; RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. Click here to join: discord.gg/7UFUPAFs8K

Someone new has joined our family. She's about ankle height, has boundless energy, and is slowly making friends with Tess.Tess loves dogs. Well, maybe not all dogs. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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. <a href="https://www.thedisordercollection.com/" rel="nofollow" target="_blank">https://www.thedisordercollection.com/</a>Are you on our Discord server RARE &amp; RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. Click here to join: <a href="http://discord.gg/7UFUPAFs8K" rel="nofollow" target="_blank">discord.gg/7UFUPAFs8K</a>

#375: Penny

You're muted. Those two words. Part of every zoom call you've ever been on, amirite? If you're on mute, no one can hear what you're saying. Except this one time. Someone definitely heard.More about Tess's Mixed Receptive-Expressive Language Disorder. And a day when she busted right out of it. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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 &amp; RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. Click here to join: discord.gg/7UFUPAFs8K

You're muted. Those two words. Part of every zoom call you've ever been on, amirite? If you're on mute, no one can hear what you're saying. Except this one time. Someone definitely heard.More about Tess's Mixed Receptive-Expressive Language Disorder. And a day when she busted right out of it. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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. <a href="https://www.thedisordercollection.com/" rel="nofollow" target="_blank">https://www.thedisordercollection.com/</a>Are you on our Discord server RARE &amp; RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. Click here to join: <a href="http://discord.gg/7UFUPAFs8K" rel="nofollow" target="_blank">discord.gg/7UFUPAFs8K</a>

#374: Homeroom

I recently had more time away from Tess than I've had in several years. Upon my return, we decided to listen to a distant city together.Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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/To check out Eric Eberhardt's You Are Listening to Los Angeles, head to NTS on YouTube:https://youtu.be/GsbETaaMWukCheck out my YouTube Channel: https://www.youtube.com/bobigelowLearn more about our life with Tess on my blog: http://www.portlandrootsmedia.com/stronger-every-day-blog-1SED 373: Tess Is Listening To Los AngelesStronger Every Day0:000:00STANDARDWIDESCREENNO IMAGEAddTECHNICAL DETAILSAUDIOMP32 CHANNELAUDIO/MPEG

I recently had more time away from Tess than I've had in several years. Upon my return, we decided to listen to a distant city together.Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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. <a href="https://www.thedisordercollection.com/" rel="nofollow" target="_blank">https://www.thedisordercollection.com/</a>To check out Eric Eberhardt's You Are Listening to Los Angeles, head to NTS on YouTube:<a href="https://youtu.be/GsbETaaMWuk" rel="nofollow" target="_blank">https://youtu.be/GsbETaaMWuk</a>Check out my YouTube Channel: <a href="https://www.youtube.com/bobigelow" rel="nofollow" target="_blank">https://www.youtube.com/bobigelow</a>Learn more about our life with Tess on my blog: <a href="http://www.portlandrootsmedia.com/stronger-every-day-blog-1" rel="nofollow" target="_blank">http://www.portlandrootsmedia.com/stronger-every-day-blog-1</a>SED 373: Tess Is Listening To Los AngelesStronger Every Day0:000:00STANDARDWIDESCREENNO IMAGE<a href="https://five.libsyn.com/episodes/view/22384154#" rel="nofollow" target="_blank">Add</a>TECHNICAL DETAILSAUDIOMP32 CHANNELAUDIO/MPEG

#373: Tess Is Listening to Los Angeles

Tess has a certain favorite activity. She's loved it for years. But as soon as you start doing that activity with her, she shuts it down. What is up with this?What happens with Tess and books?Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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/

Tess has a certain favorite activity. She's loved it for years. But as soon as you start doing that activity with her, she shuts it down. What is up with this?What happens with Tess and books?Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 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. <a href="https://www.thedisordercollection.com/" rel="nofollow" target="_blank">https://www.thedisordercollection.com/</a>

#372: The NeverStarting Story

I love keeping up with Tess and learning from this family. As a fellow rare disease parent, it’s so comforting to hear from others who get it. Tune in for a smile and some life lessons.

Heartwarming and real

Bo speaks with authenticity, grace and wisdom about Tess, the unique challenges he faces as a special needs dad and the unique beauty she embodies. Bravo and thank you — for giving special needs parents and caregivers a sense they are not alone, and for giving Tess a voice.

Beautiful every week

I quit my law job to be at home with my kids. Turns out our daughter Tess has a rare genetic disorder called Hao-Fountain Syndrome, or USP7. She's different. And now, so is everything else. #USP7 #HaoFountainSyndrome #autism

Stronger Every Day

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