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

Steve Brine MP helps spread awareness for Nerve Tumours UK
The Burbridge Family recently met up with MP Steve Brine to help spread awareness for NF. Find out more here:
Read More
Meet Tom
Tom Hazell is 37, works in IT, lives in Essex with his long-term partner, he has NF2/Schwannomatosis Find out more here:
Read More
A Gamble Across Britain
James will be cycling the length of the country this September- that's 980 miles! Find out more here:
Read More
Nerve Tumours UK at Her Majesty The Queen’s Buckingham Palace Garden Party
Nerve Tumours UK attended one of Her Majesty The Queen's Summer Garden Parties. Find out more here:
Read More
Dan’s Story
Dan wants everyone to know that NF1 comes in different forms. Have a read of his courageous story here:
Read More
#MyVisibleDifference Changing Faces
#MyVisibleDifference Changing Faces - Nerve Tumours UK attended the of My Visible Difference Report by Changing Faces
Read More
Shine a Light 2019 Success!
Check out some of the stunning photos from our extremely successful Shine a Light On Neurofibromatosis 2019 campaign
Read More