Lyndon

My name is Lyndon, I am 21 years old and I have NF. I was diagnosed at the age of 3 with type 1 NF. There is no prior history in my family of this, so in turn I am the only one. I have only had one surgery and that was to remove a tumor near my eye… more…

DeGagne Family

Our Story Hi, we are the DeGagne family, Corey, Christa and Kiara. Corey and I were married in September of 1994. In January 2002, we were blessed with a beautiful baby girl, Kiara. Corey and I knew there was a fifty percent chance our child would have NF…

Seth 

Seth Gregorash of Minnedosa is a 15 year old boy who has neurofibromatosis (NF1). This was all very overwhelming but over the years we have researched NF and learned these words as well as many other medical terms in association with NF…

Beryl

I was first diagnosed with NF about 20 years ago. At that time the NF was not that bad so I did not continue to see a doctor about it. As I got older more bumps began to show. I was able to get some bumps removed but because the doctor was only allowed to remove three at a time it became a long drawn out affair…

Bowering Family

Hello, my name is Nola Bowering, my husband is John and our son is Jackson. We live in Winnipeg, MB. I am 30 years old and a teacher at the Manitoba School for the Deaf and my husband works at Manitoba Public Insurance. I have NF1 and our son Jackson, who was born on December 4th, 2005, has NF1 as well…