Running in your underwear in public? For some, it sounds like a dream; for others, it’s straight out of a nightmare; and for a select few, well, it’s just Friday night. Now imagine running in your “undies” with a large group of like-minded individuals … just for fun. Imagine that you and your newfound friends are running in your undies with purpose: to help others, to help family. You’re undie-running to fight multiple tumors and the associated pain and challenges into which people are born. You’re undie-running to bring awareness to a devastatingly painful and debilitating disorder.
That is my story. My name is Ken, and I embraced my purpose eight years ago when a proverbial two-by-four struck me upside my head. My purpose: to eradicate neurofibromatosis. Classified as a genetic disorder, neurofibromatosis, or simply NF, promotes tumor growth along nerve endings both inside and on the body. It knows no demographic or geographic boundaries, and it affects one in every 3,000 births worldwide. I fight to end NF because this is personal. Our son was born with NF, and I will do whatever it takes to cure him.
Our son, Connor, was diagnosed with NF at 15 months. When you sit across from a medical professional telling you that your young child has a disorder for which there is no known cure, it will cause you to act. Connor’s pediatrician knew the outward signs of NF and alerted us to the pigmented spots on his skin: café au lait spots (birthmarks). When there exist six or more, the individual should be tested for NF. Connor had 12. Thus began our family’s introduction to NF and the journey that would shape our lives forever. By the age of two, Connor had been examined by neurologists, ophthalmologists, oncologists and radiologists—our new normal. MRIs were scheduled every two months, and shortly after Connor’s second birthday, one revealed the development of three optic pathway gliomas (tumors) rooted in his optic nerves. Tests confirmed they were benign, but their growth was aggressive. Radiation and surgery would bring blindness, so we chose a third option: chemotherapy. Connor went through a year of chemo to fight those known tumors, which stopped growing and have remained lifeless to this day.
Subsequent MRIs revealed a small brain tumor. A single neurofibroma adorns his wrist. Slow development of motor skills accompanied by learning disabilities, reading comprehension and retention challenges, and years of speech therapy are common for those with NF. When you are told and read stories about living with NF, you can’t help but anticipate the worst outcomes. Connor lives each day despite these challenges. He has excelled!
Now for the proverbial two-by-four: my “wake-up call.” My wife and I were never truly engaged with NF awareness, only keeping tabs on the few advances in research. When Connor entered high school, I received my wake-up call to get engaged. I contacted the Children’s Tumor Foundation (CTF), the leading nonprofit whose sole mission is to fund a cure for NF, and started an NF walk in Jacksonville, a family-friendly fundraiser. In 2014, I attended my first NF forum and was blown away following one of the most amazing, informative and personal experiences of my life. For the first time, I met other families living the same experiences as our family.
This was also the time I was introduced to Cupid’s Undie Run. CUR is the nation’s largest pantless party and one mile(ish) run. This will be our fourth year in Northeast Florida. We run in our undies, because those affected by NF can’t cover up their tumors. They can’t put on clothes to feel more comfortable, so why should we? The CUR community has raised more than $18.9 million since its inception in 2010, with 100 percent of net proceeds funding NF research through our partner, CTF. And we are seeing real results, including groundbreaking clinical trials where 70 percent of participants experienced 20 to 50 percent tumor reduction. This is real hope for our NF heroes.
We don’t know what the future holds for our NF hero, Connor, but we do know that we will not stop fighting until a cure is found. Until that day, my family and I will continue to run the streets in our undies! We will do whatever it takes!
Linkous is founder and co-director of Jacksonville’s Cupid’s Undie Run.