WHO ARE OUR NF CHAMPIONS?
Our NF Champions, and all of the other brave individuals battling NF, are the reason we run in our undies with Cupid’s Undie Run, donate our birthdays through Project: Cupid, and raise awareness about our dedication to finding a cure for NF. Located across the United States, our champions span all ages, genders, ethnicities, and share qualities we can all aspire to: strength and endurance in the face of adversity, optimism amidst the pain of this disease, and the dedication to doing all we can to find a cure.
Join us and get involved today.
2017 FEATURED CHAMPIONS
Meet Chyenne, Mark, Tracy and Maya, our 2017 featured NF Champions who have shared their stories about living with NF.
“I knew my dad was deaf and I knew he was sick sometimes, but that’s all I really knew. So when I got sick at the age of 11 and was diagnosed with NF2, I tried to not only process what the doctor had said, but also watch my dad’s face drop as I had to be the one to sign to him that his little girl suffered from the same disorder that left him deaf. I remember going home. Our neighbors were waiting for us and hugged us as we both wept. At five months old, our son was diagnosed with NF2. We knew there was a possibility that he would inherit the disorder, and when I was pregnant I made the decision that I would not allow myself to feel guilty or sad, and that I would be strong for my son.”
“I was diagnosed with NF at a very young age. The hospital started becoming a second home to me. Countless trips for MRIs, CT scans, and blood tests became my norm. In high school, things started to get serious. I started having headaches and cranial pressure. Results from a CT scan showed I had hydrocephalus and multiple brain tumors. Things started to go downhill but I received the best help and after numerous surgeries and radiation treatments, everything is under control. I like to remind myself that the only disability is a negative mindset!”
“I was 14 years old when I received my diagnosis. I had unknown growths/swelling on my thigh and both of my feet, and we had seen several physicians trying to figure out what they were. Eventually I ended up at an orthopedist’s office and he looked at me and said, “Have you heard of the Elephant Man? You got that.” Twenty years later, I still remember that moment pretty clearly even though I fortunately learned that he was not entirely correct and while I do have NF, he was not the most knowledgeable about it.”
When Maya was seven months old, she was diagnosed with neurofibromatosis type 1. Her parents lives were changed forever. Can you imagine learning that your “normal” is suddenly upside down? Reeling from the diagnosis and scrambling for answers, Maya’s parents researched and educated themselves about NF. They wanted to equip themselves with as much information about NF as possible. Beyond the facts, they knew they needed a support system. With her loyal and generous family and friends by her side, Laura, Maya’s mother was fortunate enough to meet several members of the NF community. And before she knew it, the phrase Cupid’s Undie Run entered her vernacular. “Run? Underwear? Charity? Yes, please!”
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