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Our Story

Get to know how Being Positioned came to life.

Our Story

Get to know how
Being Positioned came to life.

What We Do

We send individuals living with critical, life-altering rare genetic disorders on an all-expenses-paid journey. We use the word journey as a way of describing the trips we provide. Our hope is that each journey will serve as a turning point for our recipients and create an opportunity to improve their mental and emotional well-being. By offering individuals the chance to help plan their journey, explore new places, and take a break from their medical appointments, we hope to shift the way they view their disorder.

Christina’s Journey

In February 2016, Christina was finishing her Master’s Degree in Social Work, getting married, and moving from Texas to Florida. While walking to class one day, she suddenly lost her hearing in her left ear and began experiencing a severe episode of vertigo. Over the next month, she was repeatedly misdiagnosed, put on a special diet, and suffered through unnecessary procedures. Finally, a doctor ordered a brain MRI.

Diagnosis

They discovered that Christina had a rare genetic disorder called Neurofibromatosis Type 2 (NF2), which causes benign brain tumors to develop on the hearing and balance nerve as well as on the spine. Christina learned that her hearing loss in her left ear was permanent, and eventually, she will be completely deaf. She was devastated and was terrified of what her diagnosis would mean for her future.

During Christina and Cardin’s first year of marriage, she underwent 9-months of chemotherapy in hopes of shrinking her tumors and delaying further hearing loss.
After months of treatment, her tumors had stabilized. Her doctor decided that it was finally time to give her body a much needed break.

Travel

In an attempt to live life to its fullest, Cardin and Christina took advantage of her newfound freedom by quitting their jobs and setting off on a year-long journey around the world. Even though they didn’t know how long it would take for Christina’s health to decline, they knew that it was only a matter of time. So, they decided to experience as many sites and sounds as possible while she could still hear.

They began their adventure with a month in Dubai and South Africa, complete with a real-life safari. After eating their way across Europe, they finished their year of traveling in Japan and Thailand where they hung out with elephants and consumed as much mango sticky rice as possible.

For more highlights and to read Christina’s travel blog, click here.

Nonprofit

While traveling, Christina debated about what she was going to do when they returned home. Her plan of becoming a therapist no longer felt like the right path given her progressive hearing loss. Before they left for their first trip, Christina launched a blog called Being Positioned where she documented their travels and shared her medical journey. As she connected with people living with NF2 all over the world, she began to realize the power of traveling as a tool for coping with a serious illness.

Over time, the idea of Being Positioned—the nonprofit, was born. Christina hopes that she can use her condition and their adventure abroad to encourage and inspire others living with a rare genetic disorder.

At Being Positioned we believe that providing positive, memorable journeys to individuals living with rare genetic disorders will have a lasting impact on their ability to cope with their physical challenges.

To learn more about Rare Genetic Disorders, click below.

Learn More

As our resources grow, so will our impact.

We are proud to offer journeys to people diagnosed with all types of rare genetic disorders.

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