Registration for the 2017 NF Conference is now open

Feb 17, 2017, Posted in NF Conference, Science

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.

Stories of NF: Robert P.

Feb 15, 2017, Posted in NF Hero, NF1

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.

Children’s Tumor Foundation Exclusive Charity Partner for Tri Fort Worth

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.

International Organizations Work Together to “Shine a Light on NF” Around the Globe

Feb 1, 2017, Posted in Awareness, Community, Latest News, Press Release

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.

NF Hero in the News: Tulsa World profiles Jerry Willman

The start of the month of February means one thing… Cupid’s Undie Run events taking place across the country! As participants continue shedding articles of clothing and raising money to support NF research, Tulsa World spoke with Jerry Willman about finding out he had neurofibromatosis, what it’s like living with NF and why he keeps running the same mile again and again.