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.
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.
