“NF impacts our lives in both negative and positive ways. We have met so many amazing people because of NF that we are so grateful for because they understand and are a great support system. Unfortunately it impacts us in negative ways too, you just never know and every time you think you’ve got a handle on things, something new pops up and brings you back to the realty that is living with NF. You just never know what to expect and every new bump or mark you wonder, is that normal, or is this a new plexiform? Every behavior, is this normal or from her medicine?"
Join us June 10-13, 2017 in Washington, DC for the annual NF Conference, a global event attracting more than 300 participants worldwide across a wide range of scientific disciplines, from research and clinical backgrounds, all focused on improving outcomes for patients with neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2) and schwannomatosis.
Robert was diagnosed with NF1 when he was 10 years old.
“NF doesn’t stop me from what I want to do. It doesn't impact what I do in day to day. While it does affect my future joining the military, I hope to join the police department someday. Right now, I work at K-Bob’s Steakhouse.
Triathletes will compete and raise money to fund rare disease research
NEW YORK -- The Children’s Tumor Foundation (CTF) is pleased to be the exclusive official charity partner for the Tri Fort Worth triathlon, which takes place in Fort Worth, Texas on May 21, 2017. The Children’s Tumor Foundation is the leading nonprofit organization dedicated to funding research for neurofibromatosis (NF), a genetic disorder that causes tumors to grow on nerves throughout the body. NF affects one in 3,000 people of all populations; currently there is no effective treatment or cure.
On May 17, hundreds of landmarks in the U.S., U.K., Canada, and Australia will “Shine a Light on NF” to raise awareness for rare genetic disorder
NEW YORK – February 1, 2017 – The Children’s Tumor Foundation is pleased to announce that in May, in honor of NF Awareness Month, buildings, bridges, monuments, and landmarks across the globe will show their support in the fight against neurofibromatosis (NF) by lighting up in blue and green, the official colors of NF. NF is a genetic disorder that affects 1 in 3,000 births of all populations, and causes tumors to grow on nerves throughout the body. It can lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and cancer. There is not yet a cure.