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

Tracey, Specialist NF Nurse
Meet Tracey. She is based in Southampton & covers Hampshire, Dorset, West Sussex (part), Wiltshire and the Isle of Wight.
Read More
Meet Carolyn
Specialist NF Advisor Carolyn is based in Birmingham and covers the West Midlands, Shropshire and Staffordshire.
Read More
Today is Giving Tuesday
Call out by Karen Cockburn, Charity Director, to donate and support the NF Community
Read More
Runderpants fun run
Get your Runderpants here! Set up a fun run wearing some special fundraising pants
Read More
Meet Sarah, our new Specialist NF Nurse
Sarah will be based in Leeds, supporting families across Yorkshire and Humberside
Read More
Meet Charmaine, Our New Specialist NF Nurse
Read More
Olivia’s NF1 story
Olivia and mam Kelly share their NF1 story, highlighting school achievements and support from NTUK Specialist Nurses
Read More
Eashan’s NF1 story
'Why Run'... Eashan was diagnosed with NF1 after losing his eyesight when he was 5. His mother Jen tells his story.
Read More
2023 Awareness Campaign
Nerve Tumours UK have joined forces with RBH to raise awareness for a second successive year.
Read More