Neurofibromatosis, or NF, affects more than 2.5 million people around the world. So why don’t more people know about it?
The Children’s Tumor Foundation wants to Make NF Visible. And today the leading organization in the fight against NF has launched a worldwide campaign to do so.
Neurofibromatosis, or NF, is a genetic disorder affecting 1 in every 3,000 births, and it causes tumors to grow on nerves throughout the body. It affects all populations, races, ethnicities, and genders equally. It can lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and cancer.
It is an overwhelming and devastating disease, and yet, NF patients ask, why don’t more people know about it?
The reason is because there is no one way to define NF. And as a result, there is no one way to define a person living with NF.
Many times, NF is visible: patients are often covered with café au lait skin spots, or disfiguring tumors. Many have bone problems causing them to wear a brace, or even have an amputation.
Other times, NF is invisible: healthy-looking patients on the outside live with excruciating pain on the inside. Many have challenging learning disabilities. Others have hearing or vision loss, or have brain tumors and are bound to years of chemotherapy.
“Patients with the visible signs of NF struggle to be seen as more than just their NF, while patients whose NF is invisible, struggle to make others understand,” said Simon Vukelj, Chief Marketing Officer of the Children’s Tumor Foundation. “The Make NF Visible campaign is about seeing NF, and seeing the person living with it. We’re proud to establish this effort in order to bring attention to NF, and for NF patients, to deliver the medical treatments they need and deserve.”
The Children’s Tumor Foundation (CTF) is the world’s leading nongovernmental funder and driver of NF research for all forms of neurofibromatosis, with the additional mission focus of expanding knowledge and advancing care for the NF community. While there is no cure yet for NF, the Foundation’s collaborative and open-source research initiatives have delivered an increasing number of clinical trials for all forms of NF, and last year resulted in the first-ever FDA approved drug for a specific type of NF. With groundbreaking initiatives in innovative clinical platform trials and gene therapies under way, the Foundation’s work has spurred interest in the disease not just as an increasingly important study area for NF, but also for the impact this scientific knowledge will have on other rare diseases and cancer.
The Make NF Visible campaign, in addition to raising the general public’s awareness of neurofibromatosis, is aimed at helping NF patients and caregivers better advocate for themselves, improving NF diagnosis and clinical care within medical establishments, and increasing funding for research at all levels – basic, translational, and clinical.
There are a number of ways to join the Make NF Visible effort starting today, through NF Awareness Month in May, and beyond:
Visit the Make NF Visible website, at makenfvisible.org for ways to help make NF more visible in your community, including the online/virtual ways you can help during the pandemic, including toolkits and graphics for sharing across social media.
Watch and share the Make NF Visible launch video on social media, also available at makenfvisible.org. The video features 22 NF Heroes who represent the diversity of NF, the brave ways they face their challenges, and why they believe NF needs to be made more visible.
Save the date of May 17 for the star-studded World NF Day livestream event to raise money, raise awareness, and Make NF Visible. Now in its second year, last year’s event attracted notables such as Martin Short, Emily Deschanel, Howie Mandel, Jane Seymour, Alec Baldwin, Jonathan Sadowski, Emily Osment, James Snyder, Bob Saget, John Stamos, Danica McKellar, Shin Lim, Michael Voltaggio, Daisy Fuentes, Richard Marx, Roman Reigns, Kevin Love, and more. This year’s roster of participants, which will include celebrities, actors, musicians, athletes, comedians, and NF Heroes, will be announced in April.
Another way to ‘Make NF Visible’ is by wearing new and exclusive merchandise promoting visibility of the campaign. A ‘Make NF Visible’ t-shirt and baseball hat are now available for purchase through makenfvisible.org, with all proceeds going to the Children’s Tumor Foundation mission to end NF.
One of the most popular initiatives during NF Awareness Month is Shine a Light on NF, which helps makes NF visible through the lighting of well-known landmarks in blue and green, the official colors of NF. Recent light-ups have included Niagara Falls, the Colosseum in Rome, and London’s National Theatre. Hundreds of buildings, bridges, and monuments will be lighting up this year in May.
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 more accessible.
Partners and sponsors are invited to join any aspect of the Make NF Visible campaign, including the World NF Day event and the Shine a Light landmarks, by contacting the Children’s Tumor Foundation at media@ctf.org.
For more information on Make NF Visible, please visit makenfvisible.org
For more information on the work of the Children’s Tumor Foundation, please visit ctf.org.
