Refuel to Be Stronger: Quick Self-Care Hacks for Busy Rare Disease Parents Ever feel like you’re running on empty, with no time to refuel? What if you could recharge without needing hours to yourself? As a parent of a child with a rare disease, you’re constantly on the go, but neglecting self-care can leave you feeling drained and unable to give yo…

Building Your Child's Dream Team: Navigating Therapies for Rare Diseases Are you feeling overwhelmed by the countless therapies and appointments involved in caring for your child with a rare disease? In this episode, we’ll discuss practical solutions to the complex challenges parents of children with rare disorders face, from managing occupational,…

Stronger Together: Aligning with Your Partner on the Rare Disease Journey Are you and your partner truly aligned when it comes to supporting your child with a rare disease, or are you struggling to get on the same page? This episode dives into a common but unspoken challenge many parents face: navigating a complex healthcare journey with your partn…

Have you ever struggled to find the right tech tools to help your neurodiverse child? Managing the complex needs of a child with a rare disorder can feel overwhelming, especially when it comes to communication. This episode dives into the use of technology to simplify your life, helping your child express themselves and soothe during sensory overlo…

Traveling with Autism: 14 Essential Hacks for a Smoother Journey - Part 2 of 2 Ever found yourself dreading travel because of the unique challenges autism brings along? What if I told you 14 hacks could make your next trip a breeze? Whether you're a parent of a child with autism or navigating the world with autism yourself, traveling can feel overw…

Traveling with Autism: 14 Essential Hacks for a Smoother Journey - Part 1 of 2 Ever found yourself dreading travel because of the unique challenges autism brings along? What if I told you 14 hacks could make your next trip a breeze? Whether you're a parent of a child with autism or navigating the world with autism yourself, traveling can feel overw…

Unlocking Tess’s Potential: How a Simple Diet Change Transformed Her Health - Part 2 of 2 Have you ever wondered how the right diet could drastically improve your child's health, especially if they're dealing with complex medical conditions? For parents of children with rare diseases, balancing nutrition while managing symptoms like GERD and eczema…

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.De către 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.orgDe către Bo Bigelow

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

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

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

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

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

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

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

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

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