31 Days to Make NF Visible, get involved, and drive research for rare genetic condition
that affects millions people worldwide and has no cure
NEW YORK – May 1, 2023 – May is NF Awareness Month and the Children’s Tumor Foundation is excited to release a new class of inspiring patient stories for the Make NF Visible campaign. NF is a group of genetic conditions known as neurofibromatosis or schwannomatosis that cause tumors to grow on nerves throughout the body. NF affects all populations equally, but it manifests differently in each patient; patients with visible signs of NF struggle to be seen as more than just their NF, while patients whose NF is internal, or ‘invisible,’ struggle to make others understand. NF Awareness Month is an opportunity to amplify the voice of all NF patients through the ‘Make NF Visible’ initiative.
The Make NF Visible campaign focuses on the external things the NF community is doing to raise the profile of this rare disease, while also bringing to light both the outward and internal struggles NF patients experience in their day-to-day lives. Through storytelling, photography, and intimate first-person videos, Make NF Visible covers the scope and scale of how NF’s visibility impacts and influences public awareness, diagnosis, clinical care, and research investments in search of a cure.
“The more we learn about NF, the more important it is to focus on the people who live with the disease, and give them a platform to tell their story about how NF affects their life, in all the visible and nonvisible ways,” said Simon Vukelj, Chief Marketing Officer, Children’s Tumor Foundation. “This May and all year round, we’re honored to bring these real-life NF stories to the forefront, both so that NF patients receive the care and treatments they deserve, while also inspiring those who are fighting for someone important in their lives.”
A captivating part of the campaign is the first-person storytelling that came out of a photoshoot with award-winning photographer and NF Dad Craig Warga and the ‘Make NF Visible’ video gallery, a collection of user-generated first-person stories from patients living with NF. Honest and raw, these photos and videos capture what it’s like to live with the rare condition, the nuance of the visible and invisible aspects of NF, and how expanding awareness is changing perceptions and changing lives.
“I'm an artist. I'm a teacher. I’m a daughter. I am a college graduate. I have done so much more than what this disease is,” said Sarah Rodbell, a young woman living with NF. “It's important to make NF visible because it's one of those really rare genetic conditions that really nobody knows about besides the NF community. There’s beauty in the sense that everyone is unique who has it, and it's really powerful to see people using their voice to show that though they have all these challenges in their life, there's so much more [to them] than NF.”
One of the most popular initiatives during NF Awareness Month, Shine a Light on NF, makes NF visible through the lighting in blue and green, the official colors of NF, of hundreds of buildings, bridges, monuments, water falls, and architectural icons across the globe. In 2022, the Shine a Light campaign grew to over 575 locations in 14 countries lighting up for the NF cause. This year, hundreds of landmarks around the world have already agreed to Shine a LIght on NF and Make NF Visible, including for the first time, the iconic Empire State Building in New York City.
World NF Awareness Day, May 17, will culminate with the 4th annual Make NF Visible: A World NF Day Live Event. Hosted by 2023 CTF Ambassador Michele Holbrook and WIBW-TV News Reporter Melissa Brunner, this year’s livestream will feature the world premiere screening of CTF’s new two-part short documentary, plus new inspiring Make NF Visible patient stories. Watch parties will be hosted in select cities around the country.
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, on- and off-line.
For more information on the Children’s Tumor Foundation, as well as all NF Awareness Month campaign initiatives, please visit makenfvisible.org.
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.
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.
