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Author: Christina Menkemeller

Brad

Written by Christina Menkemeller on .

Schwannomatosis

Destination: New York City

Travel Year: 2025

My Story

One of the worst feelings in the world is knowing that something’s wrong with you, but being unable to convince doctors that it’s true. In all, I spent about a decade struggling through a string of misdiagnoses by complacent doctors, practicing half a dozen specialties. Thanks to the torturous hip and back pain I was having, a chance MRI led to the surprising discovery of over 30 tumors. To say I was shocked was an understatement, but I was finally on the way to a diagnosis.

Following more consults neurologists and neurosurgeons, they all echoed the same unwelcome news: No options. Not for surgery, chemo, radiation, or CyberKnife. After DNA testing and an appointment with a geneticist, Schwannomatosis was the result. The main symptoms are uncontrollable pain, concentrated in my spine, hips, legs, and mid/lower back. The pain is almost indescribable. It shoots, stabs, burns, and aches. I often feel like I’m wearing a “lava suit” where I have a hot neuropathy all over, hot spots that burn even more. In general, it hurts to sit, stand, lie down, roll over… it’s a constant battle to find the “least painful position.” I have a constant level of pain in my hip that never wanes. I have a brilliant pain management doctor who does all he can to make me comfortable, while I hope and pray for a treatment or cure to come around.

“The diagnosis spun me on my heels. Losing my career was one of the biggest blows. I won’t have kids and risk passing this on. I’m still working to find meaning and purpose in this “new” life. I now struggle with severe anxiety, depression, and white coat syndrome. I am, however, reassured by my faith and deeply grateful for a loving and supportive family, as I don’t know where I would be without them.”

My Journey to NYC feels like such an amazing gift—one that I surely don’t feel worthy of. I’m thrilled to share it with my mom, who’s supported me through my diagnosis, enduring all of the tough days and long nights. This trip will give me a chance to reclaim some joy after so many years of unrelenting pain. Schwannomatosis has reshaped my life: it stole my career and much of my mobility. Cost me a marriage and friendships and opportunities to be a dad. This trip, though, will offer a rare opportunity for my Mom and I to create memories beyond the confines of my normal environments and the prison that’s been created by chronic pain. NYC’s vibrancy promises a reprieve: the chance to feel alive again.
I’m eager to see Wicked on Broadway. Visiting the Statue of Liberty and 9/11 Memorial will remind me that, despite my struggles, others faced much greater hardships. I’m so blessed. Attending Mass at St. Patrick’s Cathedral will honor the faith that anchors me. This journey is more than a vacation—it’s a moment to recharge and reflect on my health challenges, blessings, and life before one scan changed everything. It’s a chance to embrace hope and envision a future shaped by resilience.

My Health

Daily Challenges

  • Severe chronic pain
  • Gait Abnormality
  • Extremely painful deformity in my left flank
  • Crippling pain down left leg and into foot and sciatica
  • Medically induced anxiety disorder and major depression
  • Neuropathy throughout body

Ongoing Health Issues

  • 30+ inoperable Schwannomas in my left flank, hip, leg, lower back, spine
  • Large tumor at T3-T4 pressing against spine, causing POTS-like symptoms, fluctuations in heart rate and blood pressure, problems breathing
  • Extreme sensitivity to changes in weather causing flare ups
  • Migraine headaches
  • Involuntary muscle spasms/contractions
  • Severe claustrophobia, requiring general anesthesia for MRI’s

Major Procedures

  • No surgical or tumor-treatment options are available to me
  • I have had enough MRIs that I make compass needles spin

    Making Travel Plans

    Brad and his mom are lifelong musical fans, so New York City—and especially Broadway—was a dream destination for them both. But with more than 30 tumors in his back and legs, Brad lives with severe chronic pain and fatigue that make walking long distances difficult. We knew the amount of walking needed in NYC could be challenging, so accessibility and thoughtful pacing were key.

    To help him fully enjoy the experience without being held back by his condition, Brad invested in a lightweight, foldable electric wheelchair for the trip, giving him the freedom to explore without sacrificing his comfort.

    With that in place, we worked to build an itinerary that balanced rest, excitement, and accessibility, ensuring he and his mom could take in all the sights while still caring for Brad’s body.

    In addition to their Broadway shows, Brad and his mom spent time at some of NYC’s most iconic museums, soaking in the art and history they both love. And since Brad is also a huge train enthusiast (but had never actually ridden one) we added a day trip to Philadelphia by Amtrak so he could finally check it off his bucket list.

    Brad’s journey was the perfect reminder that with the right support in place, it’s absolutely possible to experience new places—even ones that once felt out of reach.

    “This Journey was such a reminder to me that it’s okay to let OTHER people take the lead, and that even if things aren’t “perfect,” that it can still be incredibly meaningful—and that life is still a journey worth living. ”

    Travel Docs

    Being Positioned created a 6-day itinerary for Brad to eat, explore, and sightsee in beautiful New York City.

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    Destination New York City

    After the first Zoom call with the team, I realized that the biggest blessing in all of this was working with such a caring, enthusiastic, and compassionate team and “having” to let them handle the details. Knowing that Christina, Rebekah, and Michaela were handling all of the “worrying” for me… I truly felt blessed having a whole team behind me, with the sole purpose of making sure that my time could be as meaningful and stress-free as possible.

    Something that I realized through this experience is that all of the overwhelming emotions are what has caused me to STOP doing things. I’ve stopped traveling. I’ve stopped putting myself out there socially. Yes, there’s pain with movement and mobility challenges to overcome… all of those things have added to the list of excuses following my “no’s.” My heart got worked on a little during this journey, and my propensity to say “no” and to “wish I could do the things I used to…” Well. That’s changing now.

    There were so many great moments in this trip. Some of my favorite moments weren’t typical “touristy things.” (Don’t get me wrong. It was amazing seeing The Lion King and Wicked on Broadway. The Statue of Liberty.) But the things that really left an imprint? Experiencing the sorrow and strength memorialized at the 9/11 Museum. Seeing how kind and resilient and respectful everyday New Yorkers are. Cab driver after cab driver who went above and beyond. Doormen, bellmen, police officers, ferry operators, ticket takers, ushers, waiters… I could go on. The people of NYC and the kindness that they showed me is something that will stick with me long after my IheartNYC shirt wears out.

    “When I first learned about Being Positioned, it almost seemed too good to be true. Not only were they giving people like me the chance at once-in-a-lifetime trips, but it’s actually their goal to take every bit of the planning and frustration out of it for me. They did such an amazing job at planning the pacing of activities while still giving me the freedom to make modifications as necessary depending on what my body could handle.”

    Completed Activities

    TIMES SQUARE • STATUE OF LIBERTY • TRAIN RIDE TO PHILLY • WICKED • 9/11 MUSEUM • LION KING • AMERICAN MUSEUM OF NATURAL HISTORY • KATZ DELI

    “I think if I had to boil the entire experience down to one thought, it would be this: Spending an inconceivable (based on my current, fixed income) amount of money on this type of trip wasn’t in the cards for me. But through the generosity of all of the BP donors and the tireless work of Christina and her team, the biggest objection and roadblock to me taking a trip like this? GONE. ”

    I now realize that while zip lining and scuba diving probably aren’t very accessible, there’s a big world out there that is, full of wonderful and kind people that want to help me make the most of my experience, even if it might not look the same as someone else’s. Being Positioned made me realize that. To Christina and her team, as well as the generous donors that made this trip a reality: you’ve made a real difference in my life journey, and this experience has given me the opportunity to reflect on so many things. My promise to you is that I will not let your gift be in vain, and I will be open, fearless, and willing to go wherever it is that I’m being positioned.

    Each person diagnosed with Schwannomatosis experiences different symptoms throughout their lifetime. Some cases are considered relatively minor, while others are more severe. Despite the variation among cases – every story is hard and full of loss.

    To learn more about Rare Genetic Disorders, click below.

    Learn More

    Continue reading

    Nancy

    Written by Christina Menkemeller on .

    Hereditary Spastic Paraplegia

    Destination: San Francisco + Yosemite

    Travel Year: 2025

    My Story

    My name is Nancy and I have Hereditary Spastic Paraplegia (HSP)- a disease that is genetically passed and is characterized by progressive development of spasticity/muscle tightness of the lower body and problems with mobility. My father also had HSP though at the time we did not know what it was and that his problems could be inherited. I had an awareness that my walking felt different as early as 2016. Full of stubbornness and denial, I trudged through the next few years frustrated with my walking but not really knowing what was going on.

    In 2018, I was on a walking trail next to the river and had terrible difficulty making a 1 ½ mile walk. I also had frustrations with trying to lift my foot from the ground into the car. At that point, I talked my doctor. When she found that my lower body reflexes were hyperactive, she referred me to a neurologist. The process to be diagnosed was very intensive with genetic testing, all kinds of scans, bladder tests and EMG’s.

    I started using a cane out of the house in 2018; in 2022, I got braces for my feet and ankles; in 2023 I started using forearm crutches out of the house and my cane inside; in 2025 I am trying a knee brace and am thinking about a scooter for long distances. HSP has left me managing frustrating mobility, the risk of falls, and constantly adapting my daily routines. I have had several falls, but so far have gotten away without breaking any bones! The worst fall was trying to add seeds to the birdfeeder! With changes in muscle tone, HSP has also affected my posture which gives me back pain. I have had to cut back to less than half time at work which is very challenging.

    “Ironically, for most of my professional career, I worked as an Occupational Therapist in neuro-rehabilitation programs. I worked with people who had survived strokes, brain injuries and other neurological conditions. My patients had the same disabilities in mobility and movement that I am developing as HSP progresses for me. At times I think it has been an outstanding gift that I chose a career that gave me the experience in dealing with the issues that I have to struggle with everyday now with HSP. But it’s also a heavy load to know what I will likely have to deal with in the future due to the impacts and progressive nature of the disease. “

    Having the chance to go to San Francisco and Yosemite is beyond belief! As a New Englander, I have never seen the big mountains and incredibly beautiful landscapes of the west.
    In Yosemite, I hope to stay near the park, and have the chance to see the waterfalls and magnificent views. There is so much to learn about the wildlife, the plants/trees and the geology. I hope also to go to the Ansel Adam’s gallery to learn about his approach to photography and to see some of his pictures. I will need a scooter or chair to allow me to go on the accessible trails. In San Francisco, I hope to take a tour of the city, to go to some of the historical sites and to see the big Sequoia trees in a park north of the city.

    My Health

    Daily Challenges

    • Mobility: I’m using a cane in my house but have to be thoughtful of each step because things can get unsteady in a blink; I use forearm crutches out of the house which can be taxing on my upper body
    • Community access: The world is supposed to be accessible to people with impaired mobility but I am easily frustrated with stairs, getting through doors, and the interiors of shopping and public settings
    • I am dependent on catheters; it is a challenge to keep everything clean in public bathrooms

    Ongoing Health Issues

    • HSP affects the muscle tone of my legs and also affects my bladder; I have to use catheters and be very cautious about UTIs; using catheters at home is not bad but public restrooms are a huge challenge
    • The spasticity gives me back pain and affects my endurance

    Major Procedures

    • While getting diagnosed, I had to have a heavy batch of scans- MRI, CT etc; EMGs
    • I get Botox injections in the large muscle groups of my legs every three months to manage the spasticity/tightness

      Making Travel Plans

      For Nancy and her husband, Wally, this journey was more than just a vacation—it was their first time leaving the East Coast and the beginning of a new adventure. Nancy has been navigating progressive mobility challenges, so we knew this trip would require a thoughtful balance of accessibility, rest, and awe-inspiring beauty.

      When Nancy shared that Yosemite National Park had long been on her bucket list—and that Wally loves photography—we knew we had found the perfect match. Yosemite is one of the most accessible national parks in the country, offering paved trails, dramatic vistas, and countless moments to pause and take it all in.

      To help them feel confident and supported from the start, we arranged a private tour through Tenaya Lodge, allowing them to explore the park with a guide who catered the experience entirely to their pace and interests. We also rented a durable scooter for Nancy, giving her the freedom to fully participate in the experience without draining her energy.

      Before their time in Yosemite, they spent a few extra days in San Francisco, seeing the sights, trying new food, and savoring the freedom that travel brings. This wasn’t just about seeing new places—it was a chance for Nancy and Wally to reconnect after a difficult season, to breathe deeply in nature, and to prove to themselves that even with challenges, new adventures are still possible.

      “I think my favorite experience of the trip was the feelings and sensations while looking out at the views at the Valley View and Glacier Point lookouts. Everything I could see was so immense and beautiful. It was so hard to judge distance – at one point it felt like I could just reach out and touch everything and at another point I could appreciate that it was all so massive and far away. I can’t describe how beautiful these spots were.”

      Travel Docs

      Being Positioned created a 7-day itinerary for Nancy to eat, explore, and sightsee in beautiful San Francisco + Yosemite.

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      Destination San Francisco + Yosemite

      We had an unbelievable and unforgettable trip to San Francisco and Yosemite national Park. Our first day in San Francisco, we had a bus tour of the city, investigating all the neighborhoods and hearing about the history. Growing up in New England we always heard about the colonies and revolutionary war when we went to school and had very little information about the history of the West. After the bus tour, we decided to go back to Golden Gate Park and spent the afternoon in the botanical garden, which was wonderful.

      On our transition day from San Francisco to Yosemite, we started the drive with a visit to Muir Woods Park. I will never forget the breathtaking trees and the water running in the creeks through the park. Being Positioned rented a scooter for me to use and I was able to go everywhere in the park without having to worry about getting tired, back pain or the risk of falls. I was able to enjoy every second of our time in the park.

      We drove to the Tenaya Lodge, which was just 10 or 15 minutes from the entrance gate. Meals were very easy and they offered s’mores at the campfire every night! During our first full day at Yosemite, we had a private tour stopping at all of the major sites in the park. Our tour guide was fantastic – she knew everything about the trees, the flowers, the rocks, and the history. She had an answer for just about everything we asked! We put the scooter in the back of the car and at every stopping point in the park, we took it out so that I could enjoy the whole experience of Yosemite without any risks. Our second day at Yosemite, we were able to go back to the park on our own. We spent a lot of time at Yosemite Village and met the goal of going to the Ansel Adams gallery.

      “I learned a lot about my abilities and disabilities during this trip. I learned that with the right supportive device (the scooter) I don’t have to worry about fatigue, pain or falls. I could have as much of any experience as I wanted. With a disability, it is easy to think about everything you can’t do. This experience gave me opportunities to realize what I can do with a little adaptation.”

      Completed Activities

      San Francisco Big Bus Tour • Muir Woods • Private Day Tour of Yosemite • Bridalveil + Yosemite Falls, • Glacier Point • Ansel Adam’s Gallery • San Luis National Wildlife Refuge

      “Living with HSP and the progressive development of disability has been one of the biggest learning experiences of my life. In my normal routines, I spend a tremendous amount of time and energy focused on the getting through routine activities without any safety problems or relying on other people.”

      Having the opportunity to go on this journey was an incredible break from that repetitive thinking and focus on my disability that clouds every day. I had seven days with such wonderful experiences that my disability and health concerns were not front in my head. I hope to remember to “take a break” from my usual anxious and worried focus and be grateful for the experiences I can have and the people around me.

      Each person diagnosed with HSP experiences different symptoms throughout their lifetime. Some cases are considered relatively minor, while others are more severe. Despite the variation among cases – every story is hard and full of loss.

      To learn more about Rare Genetic Disorders, click below.

      Learn More

      Continue reading

      Noah

      Written by Christina Menkemeller on .

      Friedreich’s Ataxia

      Destination: San Francisco

      Travel Year: 2025

      My Story

      When I first heard the words Friedreich’s ataxia (FA) ring through the doctor’s office in Birmingham, AL, they were strange, empty words to a 16-year-old who had lived a seemingly “normal” life until my symptoms became noticeable a year prior. But this progressively cruel neuromuscular disease has made a rude introduction to my everyday life over the past eight years. Ever so slowly, this rare, genetic disease has robbed me of my physical abilities, making living an independent life practically impossible.

      FA has made simple things such as walking, talking, standing and writing more difficult by the day. I currently use the one-two punch of a walker and wheelchair to get around. Despite fighting the disease through staying active and doing the most I can with the abilities I have, living an independent life has been a struggle after college. My driving abilities have declined, and I have struggled to land a job despite tireless work to improve my craft during my time at Auburn University, where I graduated Summa Cum Laude with a journalism degree in December 2023.

      “This disease has taken from me again and again and isn’t done, either. But FA’s worst crime might’ve been its first. My disease began to play undercover villain around age 13, but it wasn’t obvious that it would be a life-altering issue until I had to quit sports due to puzzling physical difficulties in my sophomore year of high school. Playing baseball and basketball had always been my passion, and it crushed me not being able to play. “

      In spite of these heavy losses, staying connected with sports has continued to fill my life in my post-playing days. Visiting all 30 MLB ballparks has become my top bucket-list item, and the fact that I still have 22 parks left to see reminds me there is still a lot of good in life left ahead of me despite the ongoing effects of FA. Receiving a Being Positioned journey reminds me of the joy available on this good but hard life I’m living. When dark days come (because they will), I will look back on this trip with a heart full of gratitude.
      I was blessed to see five new stadiums in 2024, bringing my total to eight, and this trip will boost our quest forward. We will see two new stadiums and explore exciting new places on this journey. First, the Giants play the Dodgers in San Francisco’s Oracle Park, and then we’ll shuttle over to Sacramento to see the Athletics’ temporary home while they play my favorite team – the Atlanta Braves!
      This journey also allows my friend Billy and I to continue honoring my late father, who was Billy’s best friend. Before my dad passed away unexpectedly in 2022, we made plans to start this journey seeing each stadium together as soon as I graduated college. Since he isn’t around for the adventure, Billy has graciously stepped in to do it with me. We’ll venture on this trip with my dad on our hearts and minds. And it’s all due to the generosity of Being Positioned.

      My Health

      Daily Challenges

      • Difficulty walking: uses a walker/wheelchair
      • Voice issues: decreased volume + clarity of speech
      • Extreme fatigue

      Ongoing Health Issues

      • Ataxia: loss of balance + coordination
      • Loss of sensation in limbs
      • Neuropathy – can lead to body pain/discomfort + difficulty sleeping
      • Monitoring heart for cardiomyopathy: #1 cause of death in FA
      • Mental/Emotional health: depression + anxiety

      Total Surgeries: 1

      Making Travel Plans

      Before heading to San Francisco, Noah got a surprise bonus experience—a behind-the-scenes day at the Atlanta Braves stadium with Billy and both of their families. They attended batting practice, met several players, and watched a special Fourth of July game from incredible seats. It was the perfect kickoff to a summer of baseball adventures and made the anticipation for his official journey even sweeter.

      A special thanks to the Atlanta Braves for generously donating all of the baseball tickets for Noah’s journey and surprising him with a box of Braves merchandis the week leading up to his trip.

      When it came to planning the main trip, we knew that a city like San Francisco could be overwhelming if not approached with care. Our team was intentional about every detail—from booking ADA-friendly transportation to crafting an itinerary that gave Noah the chance to see all the major sights without the stress.

      Of course, the adventure didn’t stop at the city limits. One of the highlights of Noah’s journey was a road trip down Highway 1 to Big Sur, where he and Billy soaked up the ocean views and stopped at iconic photo spots.

      Noah has already faced tremendous loss in his young life, but he continues to show up with curiosity, joy, and an adventurous spirit. Helping him keep saying yes to new experiences—even when they look different than he imagined—was a joy and a privilege for our team.

      “This journey will forever stand as a reminder of how much joy there is to life. Just like fog sometimes covers the Golden Gate Bridge, sometimes joy and hope are out of view. But just like we walked up for a better view of the bridge, the best things in life are still there waiting for us even when we can’t see them. Thanks to Christina and the wonderful people at Being Positioned, I was able to see that for myself!”

      Travel Docs

      Being Positioned created a 7-day itinerary for Noah to eat, explore, and sightsee in beautiful San Francisco.

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      Destination San Francisco

      Our journey to San Francisco was full of beautiful views and a lively city! There wasn’t a dull moment – always something cool or unexpected to see. We got to cross the Golden Gate Bridge on foot after enjoying a view of it from Equator Coffee, which was something I’ll never forget. The diversity of the city was notable from the beginning, as we encountered many lively scenes full of dancing and music through the hilly streets of Chinatown. Boats also gave us tours of the bay with an excursion on Alcatraz Island, where we embarked on an audio tour of the notorious prison. On our final day, we drove down the scenic Pacific Coast Highway 1 while we jammed out to some Chris Stapleton in our rental car!

      But don’t worry, this trip was also full of amazing baseball experiences. To start our trip, we ventured an hour and a half to Sacramento to see the Athletics host my Atlanta Braves. It was nearly 100 degrees at first pitch, but we enjoyed a thrilling game inside a ballpark that gives you an up-close-and-personal view of the action.

      The next day, we toured the glorious Oracle Park. It didn’t take long to decide that this is my favorite ballpark I’ve been to yet! The view of the bay in right field with the Golden Gate Bridge in the distance behind left field is unbeatable, in my opinion. The next day, we returned to the park to see the Giants play the Dodgers. It was Barry Bonds bobblehead day, and the legendary Giant was there to throw out the first pitch! Trips to grab crab sandwiches, garlic fries and Ghiradelli hot fudge sundaes were the cherry on top for a 10/10 ballpark experience.

      “Being Positioned was very thorough in the planning of this trip, and it made things really easy for us. They provided us with an itinerary in an app on our phones that laid out the details of each day’s outings. Travelling with a wheelchair can be stressful, but Being Positioned really took the worry out of it and gave us a relaxed, enjoyable experience.”

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      Completed Activities

      Braves vs Athletics Baseball Game • Oracle Park Tour • Giants vs Dodgers Baseball Game • Fisherman’s Wharf + Alcatraz Tour • Steak Dinner • Golden Gate Bridge • Chinatown • Pacific Coast Highway

      This trip gave me bright days to look forward to and a ton of great memories to cherish. Some days with FA are very hard on me physically and emotionally but having an adventure to anticipate helped get me through some challenging days. My journey companion, Billy, would often call or text me and say, “Hey Noah, we’re going to San Francisco!” and that brought a lot of excitement into my life.

      “Upon return, I’ve loved getting to share with family and friends about the trip. One of my favorite parts is looking back at all the pictures and getting to share them with others. All my life, I’ve seen things like the Golden Gate Bridge on TV and heard about the legend of Alcatraz, but getting to experience it first-hand and tell the tale is really special on its own.”

      This journey will forever stand as a reminder of how much joy there is to life. Just like fog sometimes covers the Golden Gate Bridge, sometimes joy and hope are out of view. But just like we walked up for a better view of the bridge, the best things in life are still there waiting for us even when we can’t see them. Thanks to Christina and the wonderful people at Being Positioned, I was able to see that for myself!

      Each person diagnosed with Friedreich’s Ataxia experiences different symptoms throughout their lifetime. Some cases are considered relatively minor, while others are more severe. Despite the variation among cases – every story is hard and full of loss.

      To learn more about Rare Genetic Disorders, click below.

      Learn More

      Continue reading

      Being Positioned Featured on Blue Sky Podcast

      Written by Christina Menkemeller on .

      Christina Menkemeller on Facing Adversity, Finding Purpose in Suffering, and Lifting the Lives of Others

      Listen to the episode here or on your favorite podcast platform!

      At a time in her life that should have been one of her happiest –just prior to her wedding –Christina Menkemeller developed frightening symptoms and was given a devastating diagnosis. In the wake of this news, Christina’s fiancé Cardin never wavered in his commitment and the newlywed couple decided to take a yearlong trip that would change the course of their lives. After facing the understandable “why me” moments, Christina was buoyed by her faith and a sense of gratitude and decided to launch a nonprofit –called Being Positioned –to help others with conditions like hers go on their own dream trips. She describes this organization as a sort of “Make-A-Wish for adults” and it’s already making a huge impact and helping her find purpose in her suffering.

      Morgan

      Written by Christina Menkemeller on .

      VON HIPPEL-LINDAU SYNDROME

      Destination: Miami

      Travel Year: 2024

      My Story

      In moments my entire world had changed. During my 20-week prenatal visit, my OBGYN admitted me to the hospital and sent me in for a Brain MRI because my symptoms were way past normal pregnancy symptoms. After the MRIs and a bunch of tests were completed, I was informed I had a large tumor on my brainstem, with cysts all down my spinal cord, in my kidneys and pancreas. They diagnosed me with a rare genetic disease called Von Hippel-Lindau disease (VHL).

      My family and I had never heard of it before and were completely in shock. My doctors informed me that pregnancy hormones intensify this disease which is why my symptoms had gotten as bad as they did. After my Brain surgery to remove the tumor, we were relieved that both my baby and I had made it successfully through surgery. But, I had a number of complications that kept me in ICU for four long months. My eyes were crossed, I was having throat issues that were causing breathing problems and a lot of numbness in several places. A little less than a week later I caught pneumonia, and my lungs gave up and wouldn’t oxygenate.

      “I was placed on ECMO, which is a type of life support that did the work for my lungs by oxygenating my blood. I also had a tracheostomy done and was connected to a ventilator. While on ECMO, our baby, Catie, passed away unexpectedly and for unknown reasons. I had to have a c-section the next morning. We were all completely devastated.”

      After relearning how to walk and 4 long months in the hospital, I was released. My life has been turned upside down and there’s nothing I can do to control or change it. It’s hard to accept that I’ll never be the same person again. Scans, testing, and surgery will always control my life. But I always try to remind myself that it’s not what should stress me today. So, for today I will enjoy being with my husband, family, and friends.
      Getting selected for a Being Positioned journey has been a huge blessing in my life. When I heard about this program and their mission, I was blown away by it. Thinking of the future has become a very scary rabbit hole, but going on this trip has given me something to look forward to. My diagnosis has made me realize how short life is and how I never want to take anything for granted. With constant appointments and medical bills, I feel like VHL has taken over everything. I want us to still be able to have fun and enjoy life. This trip is giving us the ability to live again and not have to think or worry for a bit about our reality. It’s an escape, and I know we will enjoy and cherish every moment of it.

      My Health

      Daily Challenges

      • Vision issues (double vision + eye shaking)
      • Vertigo
      • Larynx spasms
      • Coughing fits

      Ongoing Health Issues

      • Breathing problems
      • Sleep apnea (damage from surgery)
      • Nerve pain from spinal cyst

      Major Procedures

      • Brain surgery
      • C-section
      • ECMO cannulation (twice)
      • Tracheostomy

        Total Surgeries: 5

        Making Travel Plans

        After a devastating year marked by unimaginable trauma and loss following her diagnosis, Morgan made a brave decision—she applied for a Being Positioned journey, hoping for a moment of peace amidst the overwhelming stress of her new reality. She and her husband desperately needed a reprieve, and our team felt privileged to create a romantic, relaxing escape for them.

        From the start, Morgan had one non-negotiable: her journey had to include a beach! With so many stunning options across the U.S., we set out to find the perfect blend of serene beauty and the artsy, cultural vibe Morgan longed for. The Miami/Fort Lauderdale area stood out with its vibrant art scene and miles of breathtaking beaches, making it the ideal destination.

        We wanted to make sure the trip was as rejuvenating as it was memorable, so we planned a romantic rooftop dinner, a couples massage, and of course, plenty of beach time. Morgan also couldn’t wait to dive into Miami’s art scene, with visits to iconic spots like Wynwood Walls and the Historic Art Deco District. And what better way to complete their escape than with a scenic boat trip, soaking in the ocean views?

        One year to the day after her diagnosis, Morgan sent us a message that brought our team to tears: “A year ago today, I was lying in a hospital bed. Today I’m lying on a beach chair. Thank you!” Moments like these remind us of the incredible impact of these journeys—transforming heartbreak into hope.

        “Florida was a dream! We got to enjoy the beautiful East coast beaches, the art district in Miami, different museums in Fort Lauderdale and an amazing massage at the NOW spa. Not to mention the amazing food!”

        Travel Docs

        Being Positioned created a 7-day itinerary for Morgan to eat, explore, and sightsee in the beautiful Miami/Fort Lauderdale area.

        • Recipient_2024_Morgan_Destination_Miami_Checklist3

        • Recipient_2024_Morgan_Destination_Miami_Checklist3

        • Recipient_2024_Morgan_Destination_Miami_Checklist1

        • Recipient_2024_Morgan_Destination_Miami_Checklist2

        Destination Miami + Fort Lauderdale

        Our meals were so wonderful, but I think our favorite place we got to eat at was Olivia’s Restaurant and Rooftop. It was a beautiful roof top view during sunset with delicious Italian food. My favorite art museum we went to was by far Wynwood Walls. It was an incredible display of multiple graffiti artists, each with multiple pieces on display. Each artist was so different in style which made the whole gallery such a great experience. We loved it. My favorite moments were sitting on the beach relaxing listening to the waves crashing onto the shore. It was truly my definition of peace. It was so wonderful to get away from the reality of our everyday lives and not have to worry about all the doctor’s appointments.

        Completed Activities

        Beach • Riverboat Dinner Cruise • Wynwood Walls • NSU Art Museum • South Beach • Las Olas BLVD • Rooftop Dinner • Massages

        “We got to really leave all our worries home and just focused on being present in the moment and we loved every minute of it. Being Positioned gave us the biggest gift we could have asked for. They not only gave us peace, but it gave me hope. ”

        This adventure we were lucky enough to get to experience showed me that just because of my diagnosis, we don’t have to stop living and enjoying life. We are both incredibly grateful for Being Positioned and what they have done for us. Thanks to them we were able to not only leave behind our stress but also gave us the opportunity to create new memories that seemed like a dream come true.

        Each person diagnosed with Von Hippel-Lindau Syndrome experiences different symptoms throughout their lifetime. Some cases are considered relatively minor, while others are more severe. Despite the variation among cases – every story is hard and full of loss.

        To learn more about Rare Genetic Disorders, click below.

        Learn More

        Continue reading

        Denise

        Written by Christina Menkemeller on .

        Neurofibromatosis Type 2

        Destination: New York City

        Travel Year: 2024

        In Loving Memory

        Denise’s Journey is sponsored in loving memory of Gregory John Adami (62) and Thomas Joseph Adami(60). Gregory served as Tax Director for a major oil service company in Houston, Texas, and died in 2024 from heart failure. Thomas served as a captain in the South Bend Indiana fire department, where he served for 32 years. He died of cancer in 2024. Both brothers were involved in activities serving their fellow man and their communities. Their memory is served well by supporting Denise in this much-deserved Journey and in supporting the efforts of Being Positioned to provide similar opportunities to other individuals battling debilitating diseases.

        If you would like to sponsor a journey in memory of a loved one, complete our contact form.

        • Tom Joseph Adami

        • Gregory John Adami

        My Story

        I had a normal life growing up and loved it. In college, I noticed my right ear was hearing things less. I graduated and was at my first job when I noticed that most of my hearing in my right ear was gone. I went to multiple doctors, but none could figure out what was wrong. When I returned from working as a missionary in Panama, I saw a doctor that scheduled my first brain MRI in 1995. That is when we discovered I had multiple brain tumors and was diagnosed with Neurofibromatosis Type 2.

        I was living in northern CA and had a friend in southern CA studying to be a nurse. When I told her about my diagnosis, she said she had studied it in class and knew a doctor specializing in NF2. I thank God that I was connected to him to start treatment. My life revolves around NF2. At age 30 in 2000, I became deaf. Two years later I met my husband who was born deaf, and we have adopted 2 deaf boys. Through the years, I have had seven brain surgeries, gamma knife, and radiation to treat the tumors that keep growing. I also have had surgeries to remove tumors from my calf and knee.

        “One doctor looked at my MRI and stated that I only had one more year to live (this was 29 years ago)…I am happy that I have gotten through each surgery even though some of the doctors said I wouldn’t make it. That I wouldn’t be able to walk. That I would be blind. But I am still here.”

        I am deaf now and slowly dealing with more tumors. Headaches and dry eyes bother me every day. I can’t swim underwater and have lost some of my balance. Recently, I have had some vision loss and most likely will not be able to drive soon. I am thankful to Being Positioned for giving me a Journey so I can make some amazing memories with my husband while I can.
        Being Positioned has given my husband and I something wonderful to dream about. I was told about this program through a friend and was nervous about signing up at first. It took a while for me to finally do something good regarding my disease. One surgery caused the whole right side of my body to be paralyzed. It took several months of therapy to move and walk again. The older I get; the more tumors grow. I am always thinking about one of my tumors doing damage that will change everything. After my most recent surgery, I decided to apply to Being Positioned and was thrilled to be chosen.

        My Health

        Daily Challenges

        • Deaf
        • Vision problems
        • Dry eyes + mouth
        • Headaches

        Ongoing Health Issues

        • Balance issues (hard walking in straight line)
        • Brain fog
        • Numerous brain tumors
        • Shunt

        Major Procedures

        • Seven brain surgeries
        • Gamma knife
        • Radiation
        • Two leg tumor removal surgeries

          Total Surgeries: 9

          Making Travel Plans

          Denise was understandably nervous about applying for a Being Positioned journey after becoming deaf and enduring so many physical challenges due to NF2. But as our team began working with her to plan the trip, we knew that her initial hesitation would soon give way to excitement.

          Our goal was to create an experience that would not only challenge and empower her but also help restore her confidence—reminding her of all she’s still capable of despite her condition.

          Planning Denise’s journey was especially meaningful because both she and her husband, Ted, are deaf. This presented a unique challenge, as we needed to find a destination that offered inclusive, adaptive activities so they could fully enjoy everything together. After exploring various options, Denise and Ted chose New York City—a perfect blend of excitement, culture, and accessibility. They were especially eager to see a Broadway show and perhaps even make an appearance in the background of the TODAY Show!

          This wasn’t just a trip—it was also a time for celebration. During their week in NYC, Denise celebrated her birthday, and the couple marked their 20th wedding anniversary! To make the occasion even more romantic, we planned a horse-drawn carriage ride through Central Park, a relaxing couples massage, and a delicious steak dinner on their final night.

          Their journey wasn’t just about seeing the sights—it was a celebration of resilience, love, and new possibilities.

          “Planning the journey with my husband gave us something to look forward to. I was excited and nervous about going. Nervous because the journey was one of my biggest trips. Going with my husband, who supported me, gave me a reason to go, but without Being Positioned we never would have gone. Every day on the trip created some of the best memories that we have.”

          Travel Docs

          Being Positioned created a 7-day itinerary for Denise to eat, explore, and sightsee in beautiful New York City.

          • Recipient_2024_Denise_Destination_NewYork_Checklist4

          • Recipient_2024_Denise_Destination_NewYork_Checklist3

          • Recipient_2024_Denise_Destination_NewYork_Checklist1

          • Recipient_2024_Denise_Destination_NewYork_Checklist2

          Destination New York City

          The trip itself gave me confidence to continue to enjoy different things. I am finally seeing that I can do more than I allowed myself before the journey. I often walk and lose balance. Having my husband helping me though the crowds at Times Square let me enjoy seeing things without worrying. Several times I started to lose my balance on the busy sidewalk. I was blessed to have my husband holding my hand every day so I wouldn’t fall. Also, nice to hold hands with him.

          We arrived at NYC on Saturday night. It was amazing to see all the lights and huge crowds of people outside. Sunday started with seeing the Statue of Liberty and Ellis Island. Then back to the hotel (using the subway for the first time) in Times Square to get ready to see the Broadway show “Wicked”. My husband and I are deaf and thankful that they have captioning devices for us. That show changed our whole point of view for the movie “Wizard of Oz.”

          Monday was a lot of walking and seeing some of the history of NYC. Walking into Grand Central Station made me feel like I was in a movie! We also saw the Public Library, Rockefeller Center, Penn Station, and Madison Square Garden. The best thing to see was the Empire State Building (don’t forget seeing King Kong). The view from the 86 floor was amazing. After the view we decided to walk around Times Square at night. It looks like Las Vegas strip but 5X larger!

          “Tuesday, we had to wake up early to be on the Today Show! I have never been on TV, so this crossed off a bucket list item. It was interesting to see how they showed the people standing outside (we got a few seconds). We met Hoda and Savannah and got pictures with them.”

          Completed Activities

          Statue of Liberty and Ellis Island • Wicked • Empire State Building • Today Show Taping • The Highline • 9/11 Museum • Couple’s Massage • Central Park Carriage Ride

          Wednesday was the most memorable day. In the morning, we went to the 9/11 Memorial. Talk about memories coming back. It took us 3.5 hours to walk around the memorial because it was so stunning to see. After seeing the memorial, we walked over to the One World Observatory. It is now the tallest building in the US. The most fun part was riding in the elevator to the top. Up on the 112 floor, we ate lunch with the amazing view. Next, we walked over to SoHo to enjoy some more quiet time. Make sure you eat at Joe’s Pizza there; it was worth it. From SoHo we walked to NYU and the George Washington Arch.

          Thursday was our last full day in NYC. It was so much fun to celebrate our 20-year anniversary and my 55th birthday (not always easy to do with NF2). We rode a horse drawn carriage around Central Park. We were able to use Live Transcribe on our phones to listen to the driver talk about the different movies that were made there. Then we had a couples massage (that was perfect timing after the miles we walked every day). My husband gave me a red rose when the massages were finished and is displayed in our bedroom. Going out for my birthday dinner was my favorite part of the day. We have never dressed up to go to a nice restaurant for dinner. Their food was delicious! I loved getting the chocolate cake dessert for my birthday. It’s rare to feel so accepted after becoming deaf and having so many surgeries.

          “Friday, we packed for our night flight home. We had the afternoon to do our final walk around Times Square to Central Park. Walking toward the Park we passed a large red HOPE sign. The sign was perfect for the two of us as we prepared to go back to real life. I will be having my MRI and neurosurgeon appointment in three weeks. Walking around NYC with my husband supporting me gave me the hope I needed to continue dealing with NF2. ”

          We are now home with our two sons and can’t thank Being Positioned enough for all the memories this trip has given us.

          Each person diagnosed with NF2 experiences different symptoms throughout their lifetime. Some cases are considered relatively minor, while others are more severe. Despite the variation among cases – every story is hard and full of loss.

          To learn more about Rare Genetic Disorders, click below.

          Learn More

          Continue reading

          Cereal de Mayo Drink Recipes

          Written by Christina Menkemeller on .

          What better way to start the day than with a Lucky Charms Latte? That’s right – two of your favorite things (coffee + cereal) in one delicious package! We’re starting Cereal de Mayo at 9 am EST on May 16th and couldn’t resist picking the latte below for our first cereal treat! Today we’re sharing lots of delicious non-alcoholic and alcoholic cereal recipes. And who knows…maybe by the end of this we’ll all start adding cereal to our daily coffee! 😉

          NON-ALCOHOLIC DRINK RECIPES:

          Lucky Charms Latte (You can find the recipe here.)

          Cereal Milk Lattes (You can find the recipe here.)

          Cold Brew Cereal Milk Iced Coffee (You can find the recipe here.)

          Lucky Charms Cereal Milk Matcha Latte (You can find the recipe here.)

          Crunch Berries Breakfast Shake (You can find the recipe here.)

          Cereal Milk Hot Chocolate (You can find the recipe here.)

          Cinnamon Toast Crunch Cereal Milkshake (You can find the recipe here.)

          Cap’n Crunch Milkshake (You can find the recipe here.)

          Fruity Pebbles Shake (You can find the recipe here.)

          Cereal Tea (You can find the recipe here.)

          DRINK RECIPES CONTAINING ALCOHOL:

          Fruit Loops White Russian (You can find the recipe here.)

          French Toast White Russian (You can find the recipe here.)

          Fizzy Trix Vodka (You can find the recipe here.)

          Lucky Charms Cereal Milk Punch (You can find the recipe here.)

          Honey Nut Cheerios Milk Punch (You can find the recipe here.)

          Cocoa Puffs White Russian (You can find the recipe here.)

          Cereal Milk Martini (You’ll find the recipe here.)

          Boozy Reese’s Puffs Cereal Milkshake (You can find the recipe here.)

          Now that we’ve given you plenty of cereal recipes and craft ideas, you’re officially ready for our Cereal de Mayo celebration! Check out the full schedule for the day here and don’t miss our Cereal de Mayo happy hour on Facebook and Instagram live at 5 pm EST on May 16th. To top off our sugar coma, we’re teaching everyone how to make French Toast White Russians. So pick your recipes, grab your cereal, and get ready to change the lives of adults living with rare genetic disorders by eating cereal!

          Join us for Cereal de Mayo on May 16th by sharing your cereal selfie on social media, tagging 5 friends, and donating $5 to Being Positioned! (To learn more about the event, click here.) This is a small, simple way that you can support us after having to cancel our physical fundraiser this year. Follow us on Facebook and Instagram to keep up with all of our #cerealdemayo adventures!

          Cereal de Mayo Crafts

          Written by Christina Menkemeller on .

          Cereal de Mayo is just a few days away! Aside from consuming way too much cereal, we’re also spending May 16th creating mini piñatas out of cereal boxes! (If you have no idea what I’m talking about – click here to learn about our exciting fundraiser!) Today we’re sharing a list of amazing cereal box crafts the whole family will enjoy!

          A Cereal Box Guitar (Click here to view the post.)

          Cereal Box Piñata (Click here to view the post.)

          Monogram letters from cereal boxes! (Click here to view the post.)

          DIY Cereal Box Gift Tags (Click here to view the post.)

          DIY Cereal Box Drawer Dividers (Click here to view the post.)

          Cereal Box Aquarium (Click here to view the post.)

          Cereal Box Succulent Planters (Click here to view the post.)

          DIY: Mini Pocket Notebook from a Cereal Box (Click here to view the post.)

          Postcards (Click here to view the post.)

          Cereal Box Drawer Dividers (Click here to view the post.)

          Awesome Cereal Box Elephant Craft (Click here to view the post.)

          Cereal Box Bookmarks (Click here to view the post.)

          Cereal Box Puzzle (Click here to view the post.)

          Cereal Box Night Light (Click here to view the post.)

          I’m not sure if I’m talented enough to make that amazing night light, but if you do this one – please send me a picture! Who knew you could turn cereal boxes into so many incredible items?!

          Join us for Cereal de Mayo on May 16th by sharing your cereal selfie on social media, tagging 5 friends, and donating $5 to Being Positioned! (To learn more about the event, click here.) This is a small, simple way that you can support us after having to cancel our physical fundraiser this year. Follow us on Facebook and Instagram to keep up with all of our #cerealdemayo adventures!

          Cereal de Mayo Recipes

          Written by Christina Menkemeller on .

          Cereal de Mayo is almost here! (If you have no idea what I’m talking about – click here to learn about our unique virtual fundraiser!) To help you prep for May 16th, we’re sharing some delicious cereal recipes. Since we’ll be consuming quite a bit more sugar than normal that day, we’re making Ranch Cornflake Crusted Baked Chicken for lunch in our house to help break up the sweetness overload (if there is such a thing 😉 ). Throughout the day we’ll be sharing live videos and stories of us making different recipes, doing cereal crafts, and even playing cereal bingo! So, make sure to follow our Being Positioned Facebook and Instagram pages to be part of all the fun!

          Ranch Cornflake Crusted Baked Chicken (You can find the recipe here.)

          Fruity Pebbles Breakfast Bread (You can find the recipe here.)

          Overnight Fruit Loop Sweet Rolls {Made with Cereal Milk} (You can find the recipe here.)

          Cereal Macarons (You can find the recipe here.)

          Golden Grahams S’mores Bars (You can find the recipe here).

          Cinnamon Toast Crunch French Toast Sticks (You can find the recipe here.)

          Crunch Berry Muffins (You can find the recipe here.)

          Raisin Bran Muffins (You can find the recipe here.)

          Fruity Pebbles Mini Cheesecake (You can find the recipe here.)

          Cornflake Biscuits (You can find the recipe here.)

          Fruit Loop Waffles (You can find the recipe here.)

          Grape Nuts Bread (You can find the recipe here.)

          Two Ingredient Cereal Yogurt Bark (You can find the recipe here.)

          Savory Hot Buttered Cheerios (You can find the recipe here.)

          Cap’n Crunch Peanut Butter Cookie Stackers (You can find the recipe here.)

          Cereal Milk Ice Cream (You can find the recipe here.)

          Breakfast Cereal Cupcakes (You can find the recipe here.)

          Reese’s Puffs Peanut Butter Balls (You can find the recipe here.)

          Milk and Cereal Breakfast Popsicles (You can find the recipe here.)

          Rice Krispie Treat Pancakes with Browned Butter Syrup (You can find the recipe here.)

          Cheerios Coated Grilled Cheese Sandwiches (You can find the recipe here.)

          Peanut Butter Crunch Black Bean Brownies (You can find the recipe here.)

          • Double Chocolate Peanut Butter Crunch Black Bean Brownies. Recipe at TidyMom.net

          Corn Pop Treats (You can find the recipe here.)

          Chocolate Mousse Parfaits with Reese’s Puffs & Chocolate Covered Pretzels (You can find the recipe here.)

          Alright, if you’re not excited about Cereal de Mayo yet after seeing alllllll of those delicious recipes, then you have a lot more will power than I do haha! I’ll be honest…I had to hide our cereals at the top of our pantry, but I’ve still caught Cardin sneaking a few bowls. We can’t wait to spend May 16th making crazy cereal recipes with you (virtually 😉 )! Which recipe are you going to make? Let us know in the comments below!

          Join us for Cereal de Mayo on May 16th by sharing your cereal selfie on social media, tagging 5 friends, and donating $5 to Being Positioned! (To learn more about the event, click here.) This is a small, simple way that you can support us after having to cancel our physical fundraiser this year. Follow us on Facebook and Instagram to keep up with all of our #cerealdemayo adventures!