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We Work

See how we create unforgettable travel experiences.

How We Work

See how we create unforgettable travel experiences.

Our Process

Donations support the planning and paying for a once-in-a-lifetime travel experience for individuals diagnosed with a life-altering rare genetic disorder. Our team works closely with each recipient to curate a personalized trip. Recipients pick the destination, suggest excursions, and influence every aspect of their journey – while we do the rest. All airfare, accommodations, and activities are pre-booked and paid for by us.

Planning begins with recipients completing a questionnaire where we ask them everything from whether they enjoy museums, to their favorite seat on the airplane. Next, they fill out a wish list of activities they hope to do during their trip. It’s a no price limit list, so we can include a few extravagant items on their itinerary.

Our team (including a certified travel agent) meets with recipients over multiple video calls throughout the planning process, which typically takes 2 to 4 months depending on their desired travel dates. Each journey is 5 to 7 days long, and the recipient gets to bring along one other person. 

We utilize resources like the Expensify card, travel insurance, and the Life 360 app to help manage finances during each trip and create a safe experience. Recipients have the option for a Being Positioned Host to accompany them on their trip and serve as a guide. But for those who opt out of having a host, we offer 24/7 remote support during the entire journey. A few weeks before their trip begins, recipients receive a care package complete with journey documents, Being Positioned merchandise, a personalized packing list, and other fun travel items.

Living with a rare genetic disorder is a constant disruption. We give recipients a chance to momentarily break away from their daily struggles and create fun memories.

It’s hard to look forward to something because you never know when your health is going to get in the way. But having the support of our Being Positioned team while planning helps encourage recipients to dream again. From watching a Broadway show in New York to swimming with dolphins in Florida, we want them to rediscover the meaning of having fun, relaxing, and enjoying life. We hope to give them a new outlook on living with their disorder and show them that they, too, are Being Positioned.

How We Create a Travel Experience

Being Positioned pays for the recipient and one other person – their Journey companion – to go on the trip of a lifetime!

Andrea’s Story


“We have about 4 days to take our daughter Andrea to Disney World, any recommendations on where to stay that is affordable?”

Only six-months after Christina learned of her own diagnosis, she came across a comment posted on an NF2 Facebook page written by a mom in South Africa whose daughter, Andrea, also has NF2. They were coming to see a doctor in Boston since treatment isn’t available for her in South Africa. It was Andrea’s first trip to the U.S., and they were hoping to finish their stay for a few days in the happiest place on earth.

Since Christina’s husband, Cardin, worked at Walt Disney World, they had access to free tickets and connections. After exchanging a few messages, Andrea’s mom was excited by Christina’s offer to make their trip more magical.

Thanks to their amazing family and friends (and a lot of Disney magic), Cardin and Christina were able to surprise the family with a 4-day all-expenses-paid vacation to Disney World! From creating an American junk food welcome package to designing surprises based on Andrea’s favorite characters and colors—Christina loved it all!

Beyond enjoying the planning process, that trip gave Christina’s diagnosis purpose. Suddenly, her suffering had meaning because if it weren’t for her disorder, she never would have had the opportunity to help this family. Planning their Disney vacation planted a small seed for Christina that would later turn into Being Positioned. Their trip was a large part of the inspiration for this organization and will forever be known as the journey that started it all.

Apply for a Journey

Do you have a rare genetic disorder and dream of traveling?
Take our quiz and find out if you’re eligible.