There are so many good things in life that a health diagnosis, like Friedreichs ataxia (FA), can’t hold me back from. No one knows that better than Being Positioned.
Founded by Christina Menkemeller in 2019, Being Positioned is a non-profit that funds, books and plans domestic travel for people with life-altering genetic disorders. Last month, my friend Billy Holbrook and I were granted a six-day “journey” to San Francisco, and Being Positioned took care of every expense and detail to make it a trip of a lifetime.
Christina lives with a condition called Neurofibromatosis Type 2, and travel helped her cope with her diagnosis in 2016. A few years later, Being Positioned started by funding journeys only for people with NF2 or Von Hippel Lindau Syndrome, but in 2024 it began taking applications from anyone with a rare disease.
How It Started
I first learned about Being Positioned through an e-mail from a Freidreichs Ataxia Research Alliance (FARA) employee. She sent out a group message to all FARA ambassadors last August telling us about an organization that funds, books and plans domestic travel for people with rare diseases. Immediately after looking through their website, I knew it would be a great way for Billy and I to continue our MLB ballpark tour.
Soon after, I applied and sent them my diagnosis confirmation, personal info, as well as a testimony about why I wanted to travel and where I might go if granted a journey. After consulting with Billy, we decided Oracle Park of San Francisco in the summer was unbeatable – sunny and cool weather, a historic ballpark and iconic landmarks.
After applying and sending them a video about my FA story and my relationship with Billy, we filled out a detailed questionnaire about our likes and dislikes about everything from food to travel preferences to hotels. We also made a wish list full of things we wanted to do and see. We listed things like going to a Giants game and also an A’s game in their temporary home of Sacramento, touring the Bay and Alcatraz Island and going to a fancy steakhouse. We even shot our shot and asked to meet Freddie Freeman of the Dodgers (who played against the Giants during our trip) because you don’t get what you don’t ask for (despite Being Positioned’s best efforts, this was the one thing on our list that didn’t come true).
Though meeting Freeman fell through, Being Positioned went as far as to add in a bonus experience to our trip. They hooked us up with a VIP experience at an Atlanta Braves game (my favorite team), including a stadium tour and an on-field view of batting practice. The best part is Billy and I got to bring our families along for this part of our trip.
Through the whole pre-trip process, Christina and the Being Positioned staff were diligent in sorting out the details of our trip, getting to know us and booking our events. Being Positioned also has a professional travel planner, Michaela Nuckels, on staff to assist with the process. Our whole trip was scheduled and put into an itinerary for us to follow in an app on our phones. The itinerary included when and where to be, the best mode of transportation/parking for each outing, restaurant recommendations, and other tips to make it as seamless for us as possible.
From application to journey time, which was under a year, Being Positioned was as kind and friendly as could be. Christina navigated several health challenges before, during and after our journey but still remained in regular contact with us to make sure every detail of our trip was thought through perfectly. Pre-journey included writing my testimony for the website, filling out questionnaires, doing several video meetings with Being Positioned and communicating via text or e-mail to answer other questions.
How It Went
This was truly an unforgettable trip. With Oracle Park now off my bucket list, I have now visited 9/30 current MLB stadiums. Oracle Park is my favorite so far because, like San Francisco, it is unique, very scenic and full of life.
Outside of the baseball games, walking (rolling, in my case) across the Golden Gate Bridge was the most memorable part of the trip. That bridge is San Francisco’s pride and joy, and it’s no wonder why – although, the whole trip up until our last day, it was mostly hidden in fog. But before we drove the Pacific Coast Highway 1, we stopped at Equator Coffees to get an amazing view of the bridge, and then we walked halfway across. The breeze hit us with the aroma of the coffee shop in our trail as we treaded along this beautiful, giant bridge above the bay.
Alcatraz Island, Chinatown, the ballparks and Pacific Coast Highway 1 gave us plenty more scenic views, and they were all different. One day we’d get views of the city landscape and tall downtown buildings, the next we got the bay and the ferry building, then mountains and grasslands, then beaches and the coastline…. point is, it’s very diverse in landscapes. It was also sunny and 60 degrees in San Francisco, but when we drove about 80 minutes to Sacramento, it was nearly 100 degrees and felt like we were back in Alabama.
Another topic of diversity was the transportation. Parking is scarce there and very expensive, so public transportation was popular. Several of them were new to me, such as self-driven Waymo cars. I had also never seen a cable car, which is pulled down the road by a line at a constant speed. There are also Muni buses and trains, along with taxis and Uber. Being Positioned got us a rental car and a lot of things were in walking distance, but we utilized Uber several times.
Of course, along with all the sights came great food. I found it interesting that all the restaurants there were localized, so there were almost no chains (besides In-N-Out and 1 Applebee’s). Among the food highlights were crab sandwiches and garlic fries at the Giants game, clam chowder at Fisherman’s Wharf, fudge sundaes at Ghirardelli, coffee shops galore (Equator Coffees and Peet’s were the main brands), and crepes for breakfast at Honey Honey Bakery & Crepery.
There was so much life on the streets of San Francisco: live bands, dancers, parades or something begging for your attention. There was a ton of diversity – including a large Asian population – and varying personalities.
As far as accessibility, I would not recommend this city to other people with disabilities, unfortunately. It was a great place to visit, but I wouldn’t want to stay there for long. The sidewalks were incredibly steep, several buildings didn’t have an accessible entrance/bathroom and most places were too tight and didn’t have room to navigate in a wheelchair. Oracle Park was easy to access and I had no issues, but the city as a whole isn’t so accommodating even though people often tried to help us.
How It’s Going
This trip was a lot of fun, and I’ve had a ton of excitement this summer between San Francisco, winning a power soccer championship in Indiana and seeing my FAm in Oklahoma City in June. These trips have really filled my cup and allowed me to do the most I can while I am physically able.
These trips got me thinking a lot about healing. No, traveling will never heal me physically, in fact, traveling with FA can be pretty exhausting. But with each trip I take, I feel like I understand myself and my life more clearly. Sometimes I feel stuck in my situation, and heck, summer in Alabama feels like it’ll never end! Seeing new places and new things remind me of God’s goodness and give me a fresh perspective on life. A shifted point of view usually helps me find my purpose again.
That’s exactly what Being Positioned is about. Christina was diagnosed with NF2 in 2016, and it turned her life upside down shortly after marriage. In the midst of a scary and uncertain situation, Christina and her husband decided to take a break from the craziness of everyday life and doctor’s appointments to travel the world. In seeing how much goodness and beauty was still in the world despite this diagnosis, she discovered joy, confidence and purpose in the midst of a hard life.
From that comes the name Being Positioned. The idea is that when we feel lost or stuck, God is positioning us to live out a greater purpose.
This organization wants to help empower people to find freedom in a life that can make you feel trapped. That’s what I find so awesome about Being Positioned – so many organizations are searching to treat and cure disease physically, but what good is that if the soul is dying while waiting for a cure? I highly appreciate all the research being done to treat and cure FA, I’m not saying that isn’t crucial. But Being Positioned is doing something really needed in helping people with rare diseases find good in the midst of the hard, not waiting to find the good once the hard is gone.
For me, this journey to San Francisco will be something to look back on and help me feel gratitude and joy on hard days. It won’t keep the dark away, it’ll just remind me there’s light ahead.
Knowin' Noah 
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