Being Positioned

Being Positioned Creating life-changing experiences for people with rare genetic conditions. đź’›
Journeys • Faith-based Wellness Retreats
Nonprofit | Get involved ⬇️

Chronic illness comes with so many weird little experiences people don’t talk about enough.The constant overthinking, pr...
06/18/2026

Chronic illness comes with so many weird little experiences people don’t talk about enough.

The constant overthinking, pretending you’re okay cause explaining everything is almost worse.

Sometimes you just want to exist without your body becoming the main topic.

So we’re keeping it real with this one, how many of us has experienced at least one of this situations?

06/16/2026

Most people experience airports as stressful.

But chronic illness can turn travel into constant mental and physical exhaustion

How far is the gate?
How much energy do I need to save?
Will there be somewhere to rest if I need to?
Can my body handle this today?

That’s why accessibility matters emotionally too.

Because when someone spends so much of life adapting, pushing through, and bracing themselves, finally feeling safe enough to exhale becomes incredibly meaningful.

And honestly, people deserve experiences where their body feels considered from the beginning.

One thing we didn’t expect from the retreat was how emotional it would feel to watch women with the same diagnosis recon...
06/14/2026

One thing we didn’t expect from the retreat was how emotional it would feel to watch women with the same diagnosis reconnect with themselves again.

Chronic illness can slowly pull people into survival mode in ways that are hard to notice while it’s happening.

Life becomes so focused on managing symptoms, adapting, and getting through the day that softness and self-care can disappear.

But something shifted during the retreat.

Being surrounded by women who understood each other created this sense of relief none of us had to explain.

06/14/2026

We're taking a moment to go back to one of our favorite nights of the year.

Cereal de Mayo was everything, and that's entirely because of you, everyone who showed up, who donated, who shared their story, who brought their energy and their heart into that room.
You are not just supporters of Being Positioned, you are the reason we get to do what we do.

It takes months of planning, coordinating, and countless moving pieces to put something like this together and every single time, the moment everyone walks through that door, it becomes worth it instantly.

This community is something special, the impact we make isn't just ours, it belongs to every single person who has ever shown up for us, in whatever way they could.

From the bottom of our hearts, thank you.

A lot of people with chronic illness are used to feeling like they have to adapt themselves to the world around them.Pus...
06/11/2026

A lot of people with chronic illness are used to feeling like they have to adapt themselves to the world around them.

Push through, ask for less, stay flexible even when their body isn’t.

We wanted our journeys to feel different from that, because accessibility isn’t just about ramps or accommodations on paper.

It’s being heard, having space to change your mind, it’s knowing your needs won’t make you “difficult”, creating experiences around real human beings instead of rigid itineraries.

That’s why communication matters so much to us during planning… because every person deserves support that actually fits their life.

06/09/2026

She almost didn't come... and then she did

What happened over those few days is something we'll let her tell you in her own words. But we will say this: watching someone arrive as one version of themselves and leave as something fuller, more certain, that never gets old.

With Haley's permission, we're sharing this because we know there are more of you out there who want to come but are scared to take that step alone.
Who wonder if it will really feel safe, if people will really understand.

They will, you will.

Applications are open. Spots are limited.

đź”— https://beingpositioned.org/retreat/

Travel with chronic illness involves so many invisible calculations people never see.How much walking?Will there be some...
06/07/2026

Travel with chronic illness involves so many invisible calculations people never see.

How much walking?
Will there be somewhere to rest?
How much energy do I need to save for later?
Will communication be accessible if I’m deaf, hard of hearing, visually impaired, or overstimulated?

A lot of people are managing all of this while trying not to inconvenience anyone around them. That’s why accessibility is about so much more than just accessible rooms.

It’s about communication, patience, flexibility, and creating an environment where people feel safe asking for what they need.

The best travel experiences don’t just support people physically.

They help people feel genuinely understood too.

06/04/2026

Our founder, Christina, shared a little about how this retreat idea came to life.

After seeing how deeply NF2 and VHL impact every part of a woman's life, emotionally, physically, mentally, and spiritually, she knew she had to do something to fill that care and support gap.

Not just focused on the diagnosis, but on the whole human being behind it all.

That's what this retreat was built to be: a space where women can feel understood, supported, connected, and cared for through the hard things life brings.

When we first launched our retreat, we limited it to individuals with NF2 and VHL because those were the communities we ...
06/02/2026

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. 🤍

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.

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Alpharetta, GA
30004, 30005, 30009, 30022

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