Our four-year-old daughter, Sophie, is full of personality; so much sass in such a tiny little girl! She's strong and independent, always insisting that she do things "all by myself." She loves to dance and play with her big brothers. And when she grows up she wants to be a ballerina dinosaur. She's silly and giggly and fierce.
A week after Sophie was diagnosed with NF1 we found ourselves running down Folly Beach in our underwear. The next event in our community listed on the CTF calendar after we got her results was Cupids Undie Run. So there we were, still not even really understanding what NF was or what it meant, but we had to do something!
Shining a Light on NF is more than buildings and bridges glowing in blue and green, it's also a wonderful opportunity to raise awareness through billboards, posters, and digital signage! We thank our partners across the country for donating space and time during NF Awareness Month:
On May 17, hundreds of landmarks in the U.S., U.K., Canada, and Austria will “Shine a Light on NF” to raise awareness for rare genetic disorder
NEW YORK – May 17, 2017 – The Children’s Tumor Foundation is pleased to announce that in recognition 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.
The new issue of NF News, the official newsletter of the Children's Tumor Foundation, is now available! In this issue you will find:
- MEK Clinical Trial Published in New England Journal of Medicine
- CRA Awardee Receives $1.5M to Continue Research
- NF Clinic Network Grows
- Stories of NF
- Awareness Month: What You Can Do
- And so much more!
Raising awareness for neurofibromatosis can happen anytime, anywhere. Whether you’re on vacation, at work, at school or just hanging out in your front yard, we know you’re on call 24/7/365, telling others what NF is, how it impacts your life and the significance of funding research. Enter the 2017 Children’s Tumor Foundation NF Awareness Month photo contest and show us Where in the world do you end NF!