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. 🤍

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.