Being Positioned

05/30/2026

Sharing a personal health update in honor of May being NF Awareness Month (a little late 🥴)! It’s truly been the hardest, but most important year of my life.

My situation has been incredibly uncertain and complicated to navigate. From suddenly losing my hearing while dealing with jaw issues, getting my port removed after 9 years, and discovering that the upstairs of our home was full of mold (which had been causing so many mystery symptoms the last 3 years)…it’s been a lot.

But through it all, God has shown me that our bodies are SO much more than a diagnosis. I am a whole human body, undergoing an incredible amount of stress and medical trauma. And it’s possible to support my body and teach it how to live and function in a calm/healthy way even with NF2.

This is a big part of why our retreat exists. Not just to “manage symptoms,” but to support the whole human behind the diagnosis. 🤍

If you or someone you love is living with NF2 or VHL, I hope this reminds you that you are not alone and that there’s still so much HOPE for you.

Applications for the fall retreat are open (Oct 1-4), so we’d love for you to apply! Or simply share this with someone who may need some encouragement.

05/09/2026

Our brains are wired to keep us safe, so it makes total sense when those doubts start getting loud the second we think about trying something new. That hesitation usually comes from a place of protection, and there’s actually a lot of courage in just acknowledging those feelings instead of trying to push them away.

The doubt can exist right alongside the part of you that’s ready for a change. You don’t have to have it all figured out to take a first step.

If you’re feeling that pull toward the our journeys but have a million questions or just feel a bit unsure, please know our DMs are always open. We’re here to chat, walk through those doubts with you, and answer anything on your mind. No pressure, just a space to talk it out.

Let this be your first step.

05/07/2026

I’ve been looking back at some of the notes from our NF2 & VHL retreat last October. Even months later, it’s hard to get over what happens when you put a group of people together who just get it.

We spent those days focusing on rest and the kind of conversations you can only have with people who understand the specific weight you’re carrying. These reviews from four of the girls who were there say it way better than I ever could.

We’re officially doing this again this year, and we’d love for you to be part of the next group.

Swipe through to read their thoughts, and if you’re ready to join us, you can apply through: https://beingpositioned.org/retreat/

05/05/2026

05/05/2026

For a bit, my only title was "Patient." But a title doesn't define your capacity.

These 5 habits didn't change my diagnosis, but they changed the way I show up in the world. Being a founder doesn't mean I don't have hard days, it just means I have a purpose that’s bigger than the symptoms.

Which of these shifts do you need to make today? Let’s chat below.

05/03/2026

Some things are in our control and some aren't, and honestly, that’s okay.

It’s easy to get caught up trying to manage every little detail, but sometimes the best thing to do is bring your energy back to the things that matter most. Your rest, your own pace, your boundaries, and how you choose to show up for yourself when things feel heavy.

We can’t always change the noise around us, but we can control how we protect our own peace.
Save this for those days when everything feels like a bit too much and you just need a reminder to breathe and refocus on what matters.

04/30/2026

Thanks for being part of making journeys like Noah’s possible! We love bringing our recipient’s dreams to life, but YOU are the only way we can make that happen. 🫶

04/29/2026

Noah shared something during our fundraiser this past weekend that hit home for all of us. It’s a perspective that sits at the very core of our mission here at Being Positioned:

So often, the narrative around rare conditions is focused solely on the “fix”, the cure, the treatment, or the hope of getting better. But Noah reminded us of a much deeper truth: a good life isn’t something you have to earn by being “healed.”

An exciting, adventurous, and meaningful life is something you deserve right now, exactly as you are.

This is why we do what we do. We aren’t waiting for the circumstances to be perfect to start living; we’re here to support a community that embraces the beauty and the adventure in the middle of the journey.

Thank you to everyone who showed up and shared this space with us this weekend. Your presence makes this work possible.

04/28/2026

We’re still smiling.

Cereal de Mayo was more than just a fundraiser, it was a room full of people deciding that joy should be accessible to everyone, no matter their diagnosis.

To everyone who bid on an auction item, grabbed a bowl of cereal, or shared a conversation with Noah: Thank you. Your presence and your generosity mean we can keep saying “yes” to our recipients and their dreams.

We have so many exciting journeys on the horizon, and we can’t wait to take you along for the ride.

Check out some of our favorite moments from the night in the slides above! 📸