The Children's Tumor Foundation's mission is to drive research, expand knowledge, and advance care for the NF community.
Since its formation, the Children’s Tumor Foundation has been crucial to the development of solid scientific data about the genetic disorder neurofibromatosis (NF). Thanks to the generosity of our donors and supporters, we are breaking through barriers and forging the pathway that will lead to a cure.
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.
More >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.
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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.
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I was 16 when I began to have hearing issues. After getting my hearing tested, the results revealed profound hearing loss in my right ear. The hearing test lead to an MRI and then to my diagnosis of NF2.
For me, the physical pain that comes with NF pales in comparison to the mental weight the disease carries.
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