May 17, World NF Awareness Day, Brings Needed Attention to Nerve Tumor Disease
Affecting Over 2.5 million people worldwide
Global Day of Recognition Culminates in Livestreamed Celebrity Event
from Los Angeles with Watch Parties Across the United States
NEW YORK – The Children’s Tumor Foundation announced a record 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 neurofibromatosis (NF) by lighting up in blue and green, the official colors of the NF cause. NF is a genetic disorder that affects 2.5 million people of all populations equally 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 neurofibromatosis.
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 across the United States from Lamar Advertising Company and donated television public service announcements (PSAs) from LG TV are amplifying the NF awareness message into homes and communities across the country.
Internationally recognized landmarks that will Shine a Light on NF include One World Trade Center (New York, NY), Niagara Falls (straddles Niagara, NY and Ontario, Canada), National Theatre (London, England), Titanic Belfast (Belfast, Northern Ireland), Edinburgh Castle (Edinburgh, Scotland), Helix Bridge (Marina Bay, Singapore), Jet d’Eau (Geneva, Switzerland), Ca’ Farsetti Palace (Venice, Italy), and Story Bridge in Brisbane, Australia, plus participating locations in Canada, Isle of Man, Republic of Ireland, Spain, and Wales.
Also taking place on World NF Awareness Day, the annual Make NF Visible: A World NF Day Live Event will broadcast live, for the first time, from LA’s The Three Clubs on Vine. Hosted by actor/director Jonathan Sadowski with performances by actor/singer Rumer WIllis and 2019 ‘The Voice’ runner up Jim Ranger, plus appearances by actors Ben Shenkman, Mark Feuerstein, Michael B. Silver, Paul Raci, and Chris Carmack; professional golfer Mark Calcavecchia; professional wrestler Roman Reigns; and retired baseball player Ian Desmond; plus inspiring stories from NF patients, all coming together for an evening to raise money, awareness, and make NF visible. The event starts at 8PM ET / 5PM PT and can be viewed online at ctf.org/live.
“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,” said Simon Vukelj, Chief Marketing Officer of the Children’s Tumor Foundation. “We are grateful to all our partners, global and local alike, for their support of this campaign, and especially to the NF community of patients, families, and friends who are helping MAKE NF VISIBLE today on World NF Day, and all year round.”
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 3,000 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: Arizona, Arkansas, Colorado Connecticut, Florida, Kansas, Illinois, Iowa, Michigan, Montana, New Jersey, Nevada, Ohio, Oklahoma, Pennsylvania, South Dakota, Tennessee, and Texas. A list of the 20 cities that have also issued proclamations can be found online at ctf.org/proclamations.
The World NF Day Live Event is supported by NFLection Therapeutics, Colbeck, GenLux, and LG Ad Solutions.
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 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 disorders that causes tumors to grow on nerves throughout the body. One in every 3,000 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.
