Focus is on elevating awareness and funding for rare genetic disorder
that affects 2.5 million people worldwide and has no cure
NEW YORK – February 4, 2020 – Neurofibromatosis, also known as NF, is a genetic disorder few have heard of, but the Children’s Tumor Foundation is working to change that with the launch of its newest initiative to Make NF Visible. This campaign, taking off in May for NF Awareness Month, will focus on the external things the community is doing to raise the profile of this rare disease and the internal struggle patients experience living with a genetic disorder that manifests differently in each NF patient.
NF affects 1 in 3,000 people, causing tumors to grow on nerves throughout the body, and it affects all ethnicities, races and genders equally. In addition to tumors growing anywhere in the body, NF may lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and cancer. It is a life-changing disease that over 2.5 million people worldwide live with every day, but there is no cure at this time.
“The Children’s Tumor Foundation recognizes NF Awareness Month each May to make NF visible on a national and international scale, which is critical to driving the life-saving research that will benefit NF patients,” said Simon Vukelj, Chief Marketing Officer of the Children’s Tumor Foundation. “The online and offline events that CTF rallies around and make available to the community are designed to, in addition to raising money, boost awareness and foster hope.”
The most popular initiative during NF Awareness Month, Shine a Light on NF, makes NF visible thru the lighting in blue and green, the official colors of NF, of hundreds of buildings, bridges, monuments, and landmarks across the globe. Last year, the Shine a Light campaign grew to over 325 landmarks around the world, lighting up in recognition of the NF cause. In addition to well-known locations in the United States, including Niagara Falls, light-ups took place in the United Kingdom, including Blackpool Tower and Edinburgh Castle, Canada, Italy, including the Colosseum, Spain, Portugal, and Austria, thanks to coordination with local NF organizations and volunteers.
In addition to buildings lighting up, the Children’s Tumor Foundation leads the community in making NF visible through the pushes to Wear Blue & Green on May 17 and Wear Green & Blue on May 22 for NF2. These visual cues, utilizing the official colors of the cause and the campaign, are another way that makes the movement accessible, declaring NF deserves our attention and NF patients deserve a cure.
Additional year-round initiatives that peak during NF Awareness Month are #EndNF and I Know a Fighter, making NF visible through the use of a shared social rally cry and storytelling hook that reflects the bravery NF patients exhibit in their daily lives. Community events also take place across the country and around the world.
For more information on the Children’s Tumor Foundation, as well as all NF Awareness Month campaign initiatives, please visit www.ctf.org/nfawareness.
Partners can join the growing Shine a Light on NF campaign by visiting ctf.org/shinealight or contacting the Children’s Tumor Foundation at media@ctf.org.
Exclusive blue and green merchandise can be purchased at www.ctf.org/store.
About Children’s Tumor Foundation
The Children’s Tumor Foundation is a 501(c)(3) not-for-profit organization dedicated to finding effective treatments for the millions of people worldwide living with neurofibromatosis (NF), a term for three distinct disorders: NF1, NF2, and schwannomatosis. NF causes tumors to grow on nerves throughout the body and may lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and cancer. NF affects 1 in every 3,000 births across all populations equally. There is no cure yet – but the Children’s Tumor Foundation mission of driving research, expanding knowledge, and advancing care for the NF community fosters our vision of one day ending NF. For more information, please visit www.ctf.org.
