Unlocking Tess’s Potential: How a Simple Diet Change Transformed Her Health - Part 1 of 2 Have you ever wondered if a simple change in diet could dramatically improve your child’s cognitive function and overall health? As a parent of a child with a rare genetic disorder, you’ve likely faced numerous challenges in managing their symptoms. This episo…

From Stares to Support: Navigating Public Reactions and Guiding Loved Ones in Caring for Your Child What do you do when people stare at your child with a rare disease? How can you turn that awkward moment into an opportunity for connection? If you've ever felt uncomfortable or angry when strangers or even loved ones don’t know how to interact with …

Eight Tools to Get Organized and Run Your Household Better Are you looking to get organized and level up your productivity? With the arrival of autumn, many of us feel the urge to hit the reset button and get our homes and lives back in order. But managing the influx of documents, communications, and daily tasks can be overwhelming, especially for …

Are you struggling to balance the needs of your neurotypical child while raising a sibling with a rare disease? This episode dives into how you can shift your mindset to see the hidden benefits your neurotypical child gains from growing up alongside a sibling with a rare condition, helping you address the common concerns of feeling overwhelmed or g…

Quick update about Miss Tess and her adventures at summer camp.Por Bo Bigelow

How could you change your mindset about taking your child with a rare disease to the doctor? Doctor visits can be overwhelming, especially when managing complex medical needs and balancing your family's well-being. This episode is about your mindset--learning to trust yourself and others. 1. Enlist two types of co-pilots for visits to make sure you…

Do you dread the exhausting ordeal of taking your child with a rare disease to the doctor? Doctor visits can be overwhelming, especially when managing complex medical needs and balancing your family's well-being. This episode tackles practical strategies to streamline these visits, ensuring your child's needs are met without leaving you completely …

Are you worried your child might be struggling with social interactions or communication, and wondering if it could be autism? Navigating the challenges of parenting or caregiving can be overwhelming, especially when it comes to understanding and addressing potential developmental disorders like autism. This episode explores how to identify signs o…

Have you ever felt like navigating insurance claims for your child with disabilities is a full-time job? As a parent or caregiver of a child with disabilities, you’re likely dealing with an overwhelming number of medical appointments and insurance claims. This episode addresses how you can simplify this process and ensure you get the coverage you d…

Are you ready to navigate the complex world of special education and become the best advocate for your child? This episode (part 2 of 2) dives into the challenges and triumphs of special education, offering insights that directly address the struggles many parents face today. If you’re seeking ways to better support your child’s educational journey…

Are you ready to navigate the complex world of special education and become the best advocate for your child? This episode dives into the challenges and triumphs of special education, offering insights that directly address the struggles many parents face today. If you’re seeking ways to better support your child’s educational journey and ensure th…

I have watched you on the shore, standing by the ocean's roar. Do you love me? Do you, surfer girl? Shout-out to Special Surfers, a non-profit organization sharing the empowering experience of surfing with children and adults with special needs of all diagnoses. specialsurfer.orgPor Bo Bigelow

One day, in a nondescript office building in Portland, three adults give something to Tess. And she comes alive.Por Bo Bigelow

Taking some time this week to reflect on community. The one we've built and continue to build, and what it means for Tess and our family.Por Bo Bigelow

If you have a kid with disabilities, your life is full of stuff you'd perhaps rather not do. Go to a million appointments, wind up in hospitals, deal with paperwork. But there are three letters that create more dread than nearly everything else.Por Bo Bigelow

I'm in the bleachers at a field. I watch two opposing lacrosse players collide with a massive crunch that's audible from the stands. Many parents gasp. I don't. I just watch in dismay and disbelief.Por Bo Bigelow

If you're trying to cure a rare disease, there are two tools that you can't live without.Por Bo Bigelow

It's a common problem in our house. A certain young lady who gets cuts from time to time. And who hates Band-Aids more than anything.Por Bo Bigelow

I want to tell you a story this week of someone who grew up here in Maine. I've gotten to know him over the past few months, and he recently raised his hand, boldly stepped forward, and made a massive difference for Tess and our foundation.Por Bo Bigelow

To quote Princess Leia, the more you tighten your grip, the more star systems will slip through your fingers.Por Bo Bigelow

More stories from near the equator. Part 2 of 2 about our recent trip with Tess to Costa Rica.Por Bo Bigelow

It's time. It's time to take Tess out of the United States and into another country. A huge thank you to Luis and Robert from The Springs Resort in Arenal.Por Bo Bigelow

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.Por Bo Bigelow

A rare event. A solar eclipse in the United States. Where was Tess on that day, and what was she doing?Por Bo Bigelow

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. If you need to donate to our biorepository because you haven't yet, email me here: bo [dot] bigelow [at] gmail.com. Bu…

I always tell you I got more questions than answers. But this week, I've come up with an answer. And it's helping me every single day.Por Bo Bigelow

Student-athlete Tess. She's been on a team this winter through her school, and we've just come off a massive, colossal celebration of the whole shebang.Por Bo Bigelow

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.Por Bo Bigelow

Tess has this thing. It's not a superpower, but a way of seeing the world. The best way to describe it comes from a movie from 1982.Por Bo Bigelow

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 from the Hao-Fountain community and you see behaviors that you're working to address, give me a shout: bo.bigelow@gmail.comPor Bo Bigelow

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.Por Bo Bigelow

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.Por Bo Bigelow

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.Por Bo Bigelow

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

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. Where to send people to donate: usp7.org/donatePor Bo Bigelow

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.Por Bo Bigelow

The bedroom of your teenage child. It's a refuge. Sacred territory. Never to be breached, unless specifically invited inside.Por Bo Bigelow

Our sweet Tess returns to the emergency room, for the THIRD time in a month.Por Bo Bigelow

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.Por Bo Bigelow

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

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.Por Bo Bigelow

We're holding an event next year and we're inviting some of the greatest minds in science. Think Real Genius meets Midnight Madness.Por Bo Bigelow

An early morning scare with Tess.Por Bo Bigelow

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?Por Bo Bigelow

There's another candle on the cake. Let's celebrate with our T-Bird, as we do each November.Por Bo Bigelow

It's been a difficult week here in Maine. Tess may not grasp what's happened, but she knows something's different.Por Bo Bigelow

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.Por Bo Bigelow

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.Por Bo Bigelow

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.Por Bo Bigelow