To End NF, we need an UN-attitude.More >
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.
My son was diagnosed with NF1 in November 2016. He first showed symptoms of cafe au lait spots when he was 6 months old. When he went in for his checkup, they notice a plexiform neurofibroma on his face. We went through three MRIs for his head, brain, and eyes and it confirmed the plexiform on his face, as well as two small tumors in his eyes. He has an oversized head, is very small and short, and has been behind on some of his developmental milestones.More >
In March, members of the CTF staff were treated to a talk by Synodos for NF1 Principal Investigator Jill Weimer, PhD, of the Sanford School of Medicine. Dr. Weimer discussed the swine model program currently underway, which we hope will lead to a more accurate screening of drugs to treat NF1. Click thru for a transcript of her talk.More >
I was 4 years old when I was diagnosed with NF1, but there were signs early in life that there was something wrong. When I use to run, my legs would run out to the sides, due to a low center of gravity. It also affected my motor skills. I had to be stitched up three times before I was 18 months old, as I kept falling down our back stairs, and the nurses use to think that my parents were harming me, for me to be hurt that many times in a short time period.More >