Being Positioned is a nonprofit creating unforgettable, once in-a-lifetime, travel experiences for individuals affected by life-altering genetic disorders. Recipients pick the destination, suggest excursions, and influence every aspect of their journey. Being Positioned arranges everything for the excursions, and influences every aspect of their journey as well as pay for the airfare, accommodations, and activities. “It’s a wish list for these adults that we strive to make come true,” explained Founder and Executive Director Christina Menkemeller.
Like many non-profits, there is a personal connection to the founder, that drives their dream to help others with similar circumstances. And this is very much the case with Being Positioned as well.
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. An MRI of her brain revealed 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 would be completely deaf. Her future looked terrifying. During her first year of marriage, she underwent 9-months of chemotherapy in hopes of shrinking her tumors and delaying further hearing loss. And after months of treatment, her tumors had stabilized.
To live life to its fullest, her husband, Cardin, and her decided to quit their jobs and set off on a year-long journey around the world. Not knowing how long until Christina’s health would begin to decline, they knew it was only a matter of time. So, they decided to experience as many sights and sounds as possible while she could still hear.
Before their worldwide travels, 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 with the hope that her condition and their adventure abroad encourage and inspire others living with a rare genetic disorder.
Christina concluded, “Living with a rare genetic disorder is a constant disruption, but we give recipients a chance to momentarily break away from their daily struggles. Providing positive, memorable journeys to individuals living with rare genetic disorders has a lasting impact on their ability to cope with their physical challenges. We hope to give them a new outlook on living with their disorder and show them that they, too, are Being Positioned.”
Readers can learn more about Being Positioned, a 501(3)c, whether you want to donate, volunteer, or apply for a journey at https://beingpositioned.org
“It’s a wish list for these adults that we strive to make come true,”