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.
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.
By Greg Davis
Iron Butt 4 NF, an odd name for a fundraising event wouldn't you say? If you've ever ridden a motorcycle for hundreds of miles, you can relate to the title.
Rachel Mindrup is a professional artist and art educator. Rachel’s son, Henry, was diagnosed with NF at the young age of 4 months old. As Rachel, with her husband by her side, navigated her way through this new world and figured out how to help her son, she discovered a way to help her family and the entire community, using her artistic talents and interest. Click thru to read Rachel’s story in her own words.
Your ongoing support has allowed us to take huge steps forward in 2016 in the fight against NF. Your efforts and contributions have been instrumental in advancing neurofibromatosis research, providing hope for the millions worldwide who live with NF, and bringing us ever closer to our shared goal of ending NF forever.