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Stories of NF: Robyn L

By November 7, 2022January 30th, 2024Awareness, NF1, Story of NF

I first learned about my diagnosis at a young age, when I constantly had to be taken in for MRIs. I learned it was something most kids didn’t have to go through, I eventually was told about the diagnosis, and didn’t really know what it meant at first, however, that would take me several more years. I was comforted to learn that I wouldn’t be alone entirely with it all as my mother and (now late) older sister were living with it too.

Living with NF has impacted my social skills quite a bit, mainly I think, due to the fact that growing up, my differences (shorter stature, slightly larger head size, not as quite academically inclined, and unathletic) were pointed out by some other kids and I got incredibly self-conscious. In addition, as a woman of transgender experience, I felt held back by potential medical steps in my transition and if living with NF would affect or hinder those steps. I’ve been lucky so far that I’ve been able to continue with the aforementioned and live a mostly normal life despite my diagnosis.

Ever since I’ve come to truly understand my NF diagnosis (around late middle school), I’ve made the self-determined decision not to let it control my life. I took a lot of the things that I was poked fun at for being different and proved those kids wrong. I eventually ran my first half marathon for the NF Endurance team my 8th grade year, which launched my love for running and sparked me to join my high school cross country team. I focused on my studies all throughout high school and was given the incredible opportunity to study broadcast journalism at the University of Arizona. I led a life so determined and focused; the average person would never have been able to tell I live with NF1.

I am a sports broadcaster. I am the host of a daily podcast covering the NHL’s Arizona Coyotes. Sports Journalism has been a passion of mine for so many years, and I’m glad to have the opportunity to grow into it for work. Secondly, as a transgender woman, I have used the last year to begin my transition journey to learn to love myself, as well as educate those who are hoping to learn more about gender identity and the spectrum. I advocate for ending the stigma around mental health as well as that has also played a major role in my family’s life. When I finally get time to myself, I love driving around Southern Arizona in my convertible Mustang, I got myself to enjoy.

Click here to view Robyn’s Make NF Visible video.


“Your life should never be dictated by what someone else says. You make your own life, your own destiny.”

Favorite Song

Bohemian Rhapsody – Queen

Dream Vacation

Visiting a big city and going on a food/culture tour