Twenty-five years ago my family's life was thrown into chaos by a word, Neurofibromatosis. It was the fall of 1992; I was seven years old. I have no memory of the chaos, nor do I remember the diagnosis. Neurofibromatosis is a mouthful for anyone much less a seven-year-old to say. Visits to specialists including at Children's Hospital Colorado followed as did tests: EEGs, MRIs, etc, etc. I first remember the diagnosis in the winter of 94 after a visit to the NF Clinic at Children's Hospital when I was about eight.
As a kid I was very tentative about telling friends my age about the disorder. I did not want to have it and wanted to be normal. The first friend I remember telling was my best friend from elementary school and he thought I had My Frozen Toses. I ended up writing my college essay on my experience growing up with NF, I wish I still had a copy somewhere. Even up until and through college it wasn't something I readily shared right away with friends. I do now consider it as a part of my identity, but it does not define me. If you would have told me at 14 that I'd be fundraising my pants off and running around downtown Denver in my undies for NF awareness I would have scoffed and looked at you askance.
I have been and hopefully will continue to be very lucky to have a mild case of Neurofibromatosis, but this still includes the cafe-au-lait spots and multiple small tumors. Every year I continue to discover new tumors. The newest one just over my right ear. Others include on my lower back near my spine, in my neck, on my arms, on my legs, and one on my stomach.
Because of NF I have been able to meet amazing people both through the international summer camp in Utah and Arizona and of course Cupid's Undie Run!
The video below was from the 2016 run, but still appropriate for 2018, Denver's date is Saturday, February 24th
You can help by donating or joining our team of undie-clad runners. Your donation will provide critical funding that will allow for treatments, clinical trials and ultimately will fund the research to find a cure for NF.
Together, we can be the difference in the lives of children and adults and help #endNF!