Five years after daughter Camryn’s diagnosis of NF, Jenny Kearschner felt ready to speak openly about what her family had been facing and what NF meant for Camryn’s future. Little did she know, a friend from high school, Brandon Hunt, was paying attention, and, while he had not yet met Camryn, he would take the unusual step of launching a charity in Camryn’s name. We asked Jenny to tell us more about Camryn’s NF journey, what being an NF Endurance athlete means to her, and how speaking out about NF has changed her – and Brandon’s! – life! We also chatted with Brandon about Bourbon Charity and what a drink in honor of NF would involve.
CTF: What is your family’s Story of NF? When was your daughter diagnosed? How does living with NF impact Camryn’s life?
Jenny: We started seeing signs of delayed development when Camryn was only 6 months old. She never crawled and had poor muscle tone since birth. We started physical therapy shortly thereafter, and her therapist encouraged us to seek additional testing. We began the rollercoaster of emotions as we saw several different doctors, some of whom would tell us encouraging things, others would cause worry and concern, but no one really had concrete answers. All of the initial genetic testing came back normal.
It wasn’t until Camryn was 3 1/2 years old when we agreed to do an MRI of her brain that she was diagnosed with neurofibromatosis type 1. At the time, the only clinical sign was two cafe au lait spots on her arms. I was devastated by this news, as I had learned about NF in dental school, and I thought I understood all that it entailed. Little did I know in the coming years, I would learn so much more!
We recently had further genetic testing done, at the recommendation from her NF clinic doctors, which revealed that Camryn’s deletion on chromosome 17 is quite large and includes 16 genes, including the NF1 gene. This deletion is seen anywhere from 5-20% of the time in patients with NF, and typically causes more cognitive impairment and behavioral issues than most people affected by NF. It also puts her at a higher risk of malignant nerve sheath tumors and more prone to neurofibromas at a young age. However, she doesn’t have any visible tumors at this time.
For the first five years after Camryn’s diagnosis, the only people who knew were family and a few close friends. I could not bring myself to tell people because of the emotions I could not hide and the fear of not knowing what her life might look like in the future. I distinctly remember a dear friend telling me shortly after her diagnosis, “Jenny, maybe God gave you this trial, so you could help other families who are going through the same thing.” I remember thinking, “What on Earth could I do?” I couldn’t even talk about her diagnosis without crying. And I didn’t talk about it for those first five years.
Why did you decide to run the Indy Monumental with the CTF NF Endurance team?
Jenny: It wasn’t until four years ago that I started running to get in shape, and I signed up for a 10k in Louisville, KY with my mom. Soon after the race started, I saw a woman in front of me, wearing a blue shirt that said “END NF” really big on the back. There were lots of runners, and I didn’t want to interrupt her race, so I told myself, “I’ll find her after the race and ask her about her shirt.” Unfortunately, I could not find her; but I know that seeing her was not coincidence! At this point, I had never heard about Children’s Tumor Foundation. But I went home that day, and got on the internet to try and find out where that shirt came from… and found CTF. I then found NF Endurance… where that blue END NF shirt had come from!
I decided to make the Indianapolis Monumental Marathon my NF Endurance annual race because most importantly…. the marathon is FLAT!!!! …and COLD! (My two favorite things for 26.2 miles!) Also, Indianapolis was our home for about 12 years and it’s such a great city! It’s also only about an hour and 45 min from our hometown of Salem, IN where we live now.
How did you end up organizing a 5K in your hometown?
Jenny: Shortly thereafter, I had decided that I owed it to Camryn to educate others about her condition. I didn’t want her to grow up thinking we were ashamed of it, I wanted her to be proud of who she was. With the example of my mother, who is an oncology nurse, and who had organized several local races benefiting the American Cancer Society in our small hometown, I decided to organize a 5k run/walk to raise awareness of NF and raise money for Children’s Tumor Foundation.
We had our first “Camryn’s Crew to Cure NF 5k Run/Walk in September 2016, and every September since. Every year we have raised around $10,000 which is absolutely amazing to me. Our community is amazing and their love for Camryn is truly humbling, however this year, was even more awe inspiring because of the help from my high school friend, who started an online charity which he says, was inspired by Camryn.
Tell us about the origins of Bourbon Charity. How are you using bourbon to raise money for important nonprofit causes?
Brandon: I got the idea to start Bourbon Charity when my dad was going through prostate cancer a few years ago. During that same time, my high school friend Jenny announced on Facebook that her daughter Camryn had multiple brain tumors and was diagnosed with NF1. With an inspiration to raise money for these causes, I decided to donate my Bourbon collection and start a nonprofit using social media to raise money for specific charities. We host several online Bourbon fundraisers featuring rare Bourbon. In our first 10 months, we have generated over $250,000 in donations for a number of charities.
What does it mean to you that Bourbon Charity donated more than $20,000 to CTF for NF research on behalf of Camryn?
Jenny: The amazing thing about service and raising awareness is that there is a ripple effect. I had no idea that my friend Brandon was paying attention to my efforts. He sent me a message about a year ago and told me that he had something big planned to help raise money for Camryn’s Crew and that he wanted me to know how big of a fan he was of her, even though they had never actually met.
His charity raised over $20,000 for Camryn’s Crew alone last year. There aren’t words to describe my gratitude. Thank you seems so insignificant! Only tears of joy and pure love and appreciation for my dear friend. I am just in complete awe of what he has done. With the support from Brandon’s Bourbon Charity, and our 5k, we raised over $34,000 for Children’s Tumor Foundation in 2019!
Brandon: Donating over $20,000 to CTF from 2,000 Bourbon Charity Supporters means that there are a lot more people on a mission now to End NF. Moreover, there is more awareness of what NF is and how it affects children and their families.
In addition to running marathons, you’ve also organized a 5k in your community. Do you have any advice for other volunteers thinking about putting together an event?
Jenny: Do it! It’s kind of like signing up for a marathon, deciding to do it is the hardest part.
I would have never dreamed of the number of people who come together to support a worthy cause. And what I didn’t realize about sharing our story and spreading awareness is how empowered I now feel. I will not let NF define who my daughter is and what she can become. I hope one day Camryn will proudly say “I have NF, but NF doesn’t have me!” What I didn’t realize was how many other families we would come to know and the support and understanding and empathy we have for each other. What I didn’t realize was how much of a blessing it would be to share our journey.
What keeps you going during the toughest moments?
Jenny: Always my inspiration to keep going: My family, and specifically, Camryn. She physically can’t run like most people can… but I can, and I do it to raise awareness for HER. On my most difficult training days or long runs, I ALWAYS wear my Blue END NF race shirt. I always say “it gives me superpowers!”
If you were to name a drink after our cause, what would be it?
Brandon: If I were to name a drink after CTF, it would definitely be called “The Camryn.” The cocktail would be sweet with hints of vanilla and caramel on the nose. After taking a sip, you would taste clove, nutmeg and a little spice that feels like a warm hug. The finish would be smooth, making you want another sip.
