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

Dexter’s NF Documentary Project
Dexter shares his motivations for taking on his NF documentary project & find out how you can watch it
Read More
World NF2 Day 2021 Emily Owen Member of our Board of Trustees Takes over our social
Read More
A Big Thank You to all our Garden Runners!
Find out how our Garden Runners got on this World Neurofibromatosis Awareness Day - May 17 2021
Read More
Centre for Appearance Research (CAR) - Somali Heritage & NF Study
If you are from Somali heritage and have NF, the Centre for Appearance Research (CAR) want to hear from you.
Read More
Shine A Light 2021 Success!
Another incredible year, 92 buildings lighting up blue to Shine a Light on Neurofibromatosis as part of this year’s campaign
Read More
Living Different: Patricks’s NF2 Blog
Read his attempt to build people's understanding of the challenges with disabilities
Read More
Beth’s Novasper Online Dog Show 2021
Find out how you can get involved in this year's fluffiest and loveable online dog show!
Read More
Christian’s Story
Christian's Mum, Ellie, share's their journey with NF & why they decided to get involved with this year's Garden Challenge!
Read More
Tate’s Shine A Light Marathon
Tate's mum shares his incredible journey with NF & why he took part in our Shine A Light Marathon to help others like him
Read More