I was diagnosed with NF1 as a baby; I don’t know exactly when, but I’ve known as far back as I can remember.
I have a large tumor on my neck/right cheek near my ear, with less than half a dozen smaller fibromas over the rest of my body that only just started to appear within the last few years.
Brandon was diagnosed with NF at 6 months. It has caused his left bone to be bowed and he has had multiple surgeries that resulted in amputating his leg. His NF also caused his speech to be delayed, as well, which he goes to speech therapy for.
By Jordan Prochnow
When my brother Jackson was born, I was his first visitor in the hospital. Before my stepmom was out of the delivery room I was there, a candy cane Blizzard from Dairy Queen in my hand, excited to meet my first sibling. I was ten years old and had been waiting for a brother or sister my entire life and now he was here.
The Children’s Tumor Foundation launched in 1978 as the National Neurofibromatosis Foundation (NNFF), established by NF patient Lynne Courtemanche, RN, her doctor Allan E. Rubenstein, MD, and attorney Joel S. Hirschtritt, Esq. A young child at the time, Ken Rudd’s mom, Joan Engel, was President of the Foundation from 1981 through 1984. Ken is now a member of CTF’s Board of Directors.
As we celebrate 40 years of driving research, expanding knowledge, and advancing care for the NF community, we asked Ken to reflect on the early days of the Foundation, how the community has grown, and the progress made in NF research for treatments and a cure.
Zoe Comiskey is 16 years old and lives with NF1. She is currently working on her Girl Scout Gold Award. She developed her project in conjunction with her doctors at Children’s Hospital of Philadelphia. Zoe will be meeting with newly diagnosed patients and their families to share her story and help them feel better about this new world they’ve now entered.