Children’s Tumor Foundation Announces Today is World NF Awareness Day For 2 Million People Around the Globe

“NF Awareness Month is a time when the NF community unites as one voice, and we're inspired by everyone’s commitment and partnership in our mission to end NF,” said Simon Vukelj, Vice President, Marketing and Communications, of the Children's Tumor Foundation.

NEW YORK May 17, 2018

The Children’s Tumor Foundation is pleased to announce that in recognition of NF Awareness Month architectural icons across the globe will show their support in the 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 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.

Launched by the Children’s Tumor Foundation in 2014 to increase public knowledge of this critical disease, the Shine a Light on NF campaign has grown substantially over the years. Once again, the Children’s Tumor Foundation is partnering with NF organizations across the globe to increase the number of architectural icons that light up in 2018, as well as to extend the reach of the NF campaign globally.

Participating landmarks include Niagara Falls and the Cobo Center (Detroit) in the United States; the National Theatre (London) and Edinburgh Castle (Edinburgh) in the United Kingdom; Swarovski Crystal World (Wattens) and LENTOS Kunstmuseum (Linz) in Austria; Canada Place (Vancouver) and the CN Tower (Toronto) in Canada; and Loggia dei Lanzi Piazza Signoria (Firenze) in Italy; among many others. Nearly 200 landmarks will light up, spanning 11 countries. CTF’s campaign to literally shine a light on NF through building lightings has attracted interest and partners worldwide, including the U.K.-based Neuro Foundation, NF Kinder (Austria), the Tumour Foundation of British Columbia, Neurofibromatosis Society of Ontario, the ANFQ L'Association de la neurofibromatose du Québec, LINFA Onlus (Italy) and ANF onlus Italy, among others.

“NF Awareness Month is a time when the NF community unites as one voice, and we're inspired by everyone’s commitment and partnership in our mission to end NF,” said Simon Vukelj, Vice President, Marketing and Communications, of the Children's Tumor Foundation. “The Children’s Tumor Foundation is grateful to all involved in this year’s NF awareness campaign – patients, doctors, researchers, volunteers, donors, corporations, organizations, and local governments.”

Shine a Light on NF is one part of a month-long awareness campaign that is comprised of online and offline events designed to educate the community about this under-recognized genetic disorder. The Children’s Tumor Foundation leads this effort with the “#EndNF” and “I Know a Fighter” initiatives. In addition, events are held in cities across the country and around the world to raise awareness, raise money for research, and connect the NF community.

  • In addition to “Shine a Light on NF,” 28 states in the U.S. have issued proclamations declaring May as NF Awareness Month or May 17 as NF Awareness Day: Alabama, Arkansas, California, Colorado, Delaware, Florida, Georgia, Idaho, Illinois, Kansas, Kentucky, Massachusetts, Michigan, Missouri, Montana, New York, North Carolina, North Dakota, Ohio, Pennsylvania, South Carolina, Tennessee, Utah, Vermont, Washington, Wisconsin, and Wyoming. A list of the 34 cities that have also issued proclamations can be found online at http://www.ctf.org/get-involved/proclamations.
  • A listing of local NF Walks, NF Endurance events, I Know a Fighter 5Ks, and local community fundraisers taking place all across the country to raise money to fund NF research and recognize the positive spirit and resolve of local NF Heroes and their families can be found online at ctf.org/calendar.
  • Building on last year’s well-received collection of portraits and essays of adults living with NF, the Children’s Tumor Foundation released a new class of stories in the ‘This is NF’ photo series by award-winning photojournalist Craig Warga, an NF parent who set out to inspire his young son who lives with NF1. This collection is about people living with neurofibromatosis – not just living, but succeeding and thriving. The NF story can be one full of hurdles – diagnosis, symptoms, doctor appointments, MRI scans, surgeries and/or clinical trials. With this project, we’re telling a side of the NF story that isn’t often told: the passion that those living with NF bring to their daily lives, to their work, their goals, their relationships, the things they want to get out of life, with or without NF. The full collection is available online at ctf.org/thisisnf.
  • Official merchandise with “I Know a Fighter,” “Born a Fighter,” and End NF imagery, is available for purchase online at http://www.ctf.org/store. All purchases support the efforts of the Children’s Tumor Foundation.

The Children's Tumor Foundation is committed to finding effective treatments for the millions of people worldwide living with neurofibromatosis. In addition to benefitting those who live with NF, this research is shedding new light on several forms of cancer, brain tumors, bone abnormalities, and learning disabilities, ultimately benefiting the broader community.

For more information on the Children’s Tumor Foundation, as well as all the NF Awareness Month campaign initiatives, please visit http://www.ctf.org/nfawareness.

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 http://www.ctf.org.

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About the Author: Bob Cooper

Bob Cooper is Canadian Business Tribune''s senior editor. He is also a nationally syndicated newspaper columnist and a bestselling author. He lives in London Ontario and covers the intersection of money, politics and finance. He appears periodically on national television shows and has been published in (among others) The National Post, Politico, The Atlantic, Harper’s, Wired.com, Vice and Salon.com. He also has served as a journalist and consultant on documentaries for CBC and Global News . In 2014, he was the winner of the Society of American Business Editors and Writers' investigative journalism award, and the winner of the Izzy Award for Journalism from Ithaca College's Park Center for Independent Media. He was also a finalist for UCLA's Gerald R. Loeb Award and Syracuse University's Mirror Award. Before becoming a journalist in 2006, Sirota worked in Washington for, among others, U.S. Rep. Bernie Sanders, the U.S. House Appropriations Committee Minority Staff and the Center for American Progress.

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