Being Positioned

When we first launched our retreat, we limited it to individuals with NF2 and VHL because those were the communities we knew best through our own experiences.

But over the past several months, we’ve heard from people with NF1 and schwannomatosis who shared that they were looking for the same thing we are creating: a chance to rest, connect, learn, and be reminded they aren’t walking this journey alone.

So we’re excited to share that our 2026 Being Positioned Retreat is now open to women (18+) living with NF1, NF2, schwannomatosis, and VHL.

Our retreat is a faith-based wellness retreat designed to support the whole person through community, education, nervous system support, rest, and encouragement.

While every diagnosis is different, so many of the challenges overlap: navigating uncertainty, medical trauma, anxiety, isolation, and learning how to care for yourself in the midst of it all.

Our hope is to create a welcoming community where women affected by these rare genetic conditions can step away from the appointments and responsibilities for a few days and simply be cared for.

Applications are now open, and we can’t wait to see who God brings together for this year’s retreat. 🤍

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.

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/

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.

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.