Being Positioned
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Creating life-changing experiences for people with rare genetic conditions. đź’›
Journeys • Faith-based Wellness Retreats
Nonprofit | Get involved ⬇️
Our founder Christina gets real in this one.
A doctor once told her that having NF2 was like grenades, always waiting to go off and that language built a whole narrative in her head of “brace yourself, the next disaster is coming.”
Then she got curious, what if she started saying good things instead? actual positive, healthy things about her situation.
Her ask for you: go question the narrative someone else handed you and see what actually changes when you do.
07/30/2026
We spend so much time looking for the next thing that will help us feel better. the supplement, the routine, the plan.
But the most powerful things? Are completely free and available to you right now.
Save this one for the days when you feel like you’re not doing enough. Because you probably already have everything you need.
Our founder Christina shared this little ritual she does after every single doctor’s appointment, MRI, infusion, literally any of it.
She goes home, and before anything else, makes herself go back outside for at least 10 minutes, no phone.
Feet in the grass if she can, just a couple minutes to breathe and let her body reset from the fluorescent lights, the stress, all the toxic-clean-smelling everything.
It sounds small but it genuinely helps.
It’s one of the things we love teaching (and actually living out) with the women at our Fall Retreat — October 1st–4th, out on the most beautiful Florida coast.
And yes, it’s fully covered by us, no cost to you.
If you have NF1, NF2, Schwannomatosis, or VHL, come find us. Applications are open at beingpositioned.org
07/27/2026
We know what it’s like to wonder if there’s a space that was actually built for you.
This retreat was.
If you’re living with NF1, NF2, Schwannomatosis, or VHL and you’re tired of going through it alone, we want you in the room this October.
Link in bio or visit beingpositioned.org/retreat to learn more and DM us any questions.
We don’t talk enough about the things that actually heal us…
Not the appointments, the test results, the waiting rooms and the second opinions and the explaining yourself over and over again.
We’re talking about the tiny things, the nourishing meal you made yourself, the sweet laughter with a friend, watching the sunrise...
The small, daily reminders to your body that you are loved and safe truly are the best medicine.
07/20/2026
Okay now that the World Cup is over, we want to one of our favorite World Cup stories ever, and not just because it’s a great underdog moment.
Guy was an electrician at 26. No contract, no spotlight, nothing lined up.
Then at 40 he’s out there making 8 saves against Argentina like it’s nothing.
We felt that one, because that’s kind of what rare disease life is, showing up for a game people don’t think you can win, doing it anyway, quietly, for years.
Anyone else relate?
from the right person.
Living with a chronic condition means your body is working harder than most people will ever understand. And the small things? They’re not small at all.
Which slide was yours today? Tell us in the comments 👇
07/11/2026
The most dominant player at the 2026 World Cup isn’t running on talent alone, he’s running on sleep, sunlight, real food, and his dad’s lasagna.
And honestly? we’ve been saying this for years.
Erling Haaland treats his body like it’s worth taking care of, because it is and the results speak for themselves.
Drop your checklist score below 👇 and tag someone who needs to see this.
*How many are you already doing?*
We need to say this louder.
There’s this pressure to always be recovering, improving, pushing through, showing up, even when your body is begging you to stop, and when you finally do stop, the guilt shows up right behind it.
But rest is not giving up, rest is not weakness, rest is not something you have to earn.
The version of you that cancelled plans, stayed in bed, said no, asked for help, that version is just as worthy, just as enough.
07/10/2026
In soccer, players don’t always choose their team either. They get assigned, drafted, placed, and then they give everything they have for those people anyway.
Some of the most important teams in our lives work exactly the same way. The people who showed up after the diagnosis, who didn’t need a jersey to prove they were in your corner, who have been fighting for the same thing as you, your wellbeing, your joy, your life, without ever being asked.
There is nothing in this world like knowing someone is in your corner unconditionally.
That’s the team we want to celebrate today.
And if you’re still looking for yours, we’d love to be part of it this October. Apply at beingpositioned.org to the Being Positioned retreat.
Click here to claim your Sponsored Listing.
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Alpharetta, GA
30004, 30005, 30009, 30022