Katie’s Story
08 July 2020
My name is Katie Kobzeff, 33, and born and raised in Orange County, California.
When I was 4 years old, I remember being in the Doctor office and hearing my Mom screaming in the other room. Next thing I know I’m being shoved into a MRI machine being told not to move at all. At first, they thought I had a cancerous tumor but thank God, I was diagnosed with Plexiform Neurofibromas in my left nose and cheek.
I have had over 22 surgeries on face. I have to get surgery every 1-2 years on my nose to de-bulk the tumor so I can breathe and cosmetic reasons. Growing up with a tumor on my face is something I can not hide.

Yes, it sucks after I have surgeries and a million people ask me what happened, or tell me that I have dirt on my face when it’s the scar line. I try not to have it bring me down but share my story instead by running marathons. I have ran over 49 marathons! 12 fulls & 37 half’s and I have raised over $20k for various children’s tumor foundations over the years!


I have ran all over the country and even tested @nike.__shoes before they hit the store! I ran for Nike for 6 years! Running is a way for me to get through my problems and all the surgeries I’ve had to deal with! I feel blessed that I just have the 1 tumor and not multiple and I just want to share my story and let you know you are not alone and I’m trying to be brave by sharing my story!
Filter News

Teenage Transition Day, Guy’s Hospital NF Centre
Guy's Hospital Neurofibromatosis Centre celebrate the success of their first teenage day since COVID
Read More
India’s NF2 story & Jasmin’s ultramarathon
India describes her NF2 diagnosis & surgery - her older sister Jasmin is fundraising for NTUK with a 50k ultramarathon!
Read More
New ways to treat NF1 tumours with existing drugs
Researchers at the Living Systems Institute, University of Exeter, UK are researching new ways to treat NF1 tumours
Read More
Easter Message
A message from Karen, our Charity Director, wishing you a very Happy Easter!
Read More
Equality, Diversity and Inclusion in the Workplace
Nerve Tumours are here to support you in the workplace: iNForm; workplace equality research & creating an inclusive workplace
Read More
Wayne’s World of Marathons
Read about Wayne's world: marathons, running a wedding fayre business with wife Leanne and their son Harley who has NF1
Read More
Team NTUK London Marathon 2023
Meet some of our runners and read their inspiring marathon motivation stories
Read More
Pip’s London Marathon
Pip describes life with NF1 & limited vision and his motivation to run the London Marathon
Read More