May 17, World NF Awareness Day, Brings Needed Attention to Rare Genetic Disease
Affecting Over 4 million people worldwide
For the first time, the Empire State Building and the London Eye
join internationally recognizable landmarks glowing blue and green
NEW YORK – The Children’s Tumor Foundation announces nearly 500 world-famous buildings, bridges and architectural icons are participating in this year’s Shine a Light on NF campaign and will show their support in the global fight against NF by lighting up in blue and green, the official colors of the NF cause. NF is a group of genetic conditions that affects 4 million people around the world 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 no cure yet, but this campaign raises awareness and communicates the need for scientific research funding into NF.
Launched by the Children’s Tumor Foundation in 2014 to increase public knowledge of this rare disease, the Shine a Light on NF campaign has grown substantially over the years. The Children’s Tumor Foundation partners with NF organizations, medical and research institutions, and corporate and media partners around the world to expand awareness globally. In addition to the building light-ups, donated billboards from Lamar Advertising Company are amplifying the NF awareness message into homes and communities across the country.
Internationally recognized landmarks that will Shine a Light on NF include the Empire State Building and One World Trade Center (New York, NY), Niagara Falls (straddles Niagara, NY and Ontario, Canada), lastminute.com London Eye and National Theatre (London, England), The Kelpies (Falkirk, Scotland), La Fontana dell’Acqua Paola (Rome, Italy), and Story Bridge in Brisbane, Australia, plus participating locations in Canada, Isle of Man, Northern Ireland, Republic of Ireland, Singapore, Spain, and Wales.
Also taking place on World NF Awareness Day, the annual Make NF Visible: A World NF Day Live Event will feature the world premiere of CTF’s new two-part short documentary about two early teens navigating NF, school, friends and family all while their NF affects their hearing and their vision, respectively. In addition to their stories, additional patient stories from CTF’s Make NF Visible campaign will be shared. The event starts at 8PM ET / 5PM PT and can be viewed online at ctf.org/live.
“Through the years, the global NF community has really embraced our effort to light up the world in blue and green to spread awareness and create such a visible show of support of NF patients,” said Simon Vukelj, Chief Marketing Officer of the Children’s Tumor Foundation. “More people know about NF than ever before, but we won’t stop until everyone knows about it. Raising awareness of NF is the critical first step in generating the funding that’s needed for scientific research that will improve the lives of all NF patients.”
World NF Awareness Day takes place during NF Awareness Month, a dedicated time every year to bring attention to the inspirational and remarkable stories of those living with NF, and the critical need for research to better their lives. Shine a Light on NF is one part of a month-long awareness campaign called ‘Make NF Visible’ that consists of online activities and community events designed to educate the public about this under-recognized disease that affects 1 in 2,000 births. It’s a chance for patients, their families, and supporters to unite their voices and proclaim that NF is a serious condition that deserves everyone’s attention.
Eighteen states have issued proclamations declaring May as NF Awareness Month or May 17 as NF Awareness Day: Alabama, Delaware, Florida, Illinois, Iowa, Kansas, Kentucky, Michigan, Missouri, New Jersey, North Carolina, Ohio, Oklahoma, Pennsylvania, South Carolina, Utah, Virginia, and Washington. A list of the 23 cities that have also issued proclamations can be found online at ctf.org/proclamations.
For the full, global list of locations Shining a Light on NF, visit ctf.org/shinealight.
For more information about Make NF Visible: A World NF Day Live Event, visit ctf.org/live.
For more information about NF Awareness Month and Make NF Visible, visit makenfvisible.org.
For more information about the Children’s Tumor Foundation, visit ctf.org.
About the Children’s Tumor Foundation
The Children’s Tumor Foundation is the world’s leading nonprofit dedicated to funding and driving innovative research that will result in effective treatments for the millions of people worldwide living with NF, a group of genetic conditions that causes tumors to grow on nerves throughout the body. One in every 2,000 people is born with some type of neurofibromatosis or schwannomatosis, which may lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, or cancer. NF affects all populations equally, and while there is no cure yet, 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: ctf.org.
