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 Salvatore La Rosa, VP Research and Development
Early investments from the Children’s Tumor Foundation are paying off and delivering innovative and impactful research. It’s great to see research moving forward thanks to the support of both private and public funding. Our philosophy of betting on high-risk high-reward projects is proving successful and will eventually help us realize our vision of ending NF.
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.
On May 17, hundreds of landmarks around the world will “Shine a Light on NF” to raise awareness for genetic disorder that causes tumors and has no cure at this time
NEW YORK – May 17, 2018 – The Children’s Tumor Foundation is pleased to announce that in recognition of NF Awareness Month architectural icons across the globe will show their support in the fight against neurofibromatosis (NF) by lighting up in blue and green, the official colors of the NF cause.
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.