Four million people around the world live with NF, a group of genetic conditions that cause tumors to grow on nerves. For them, every day is a fight — against pain, against uncertainty, and too often, against a system that’s too slow to act.
On World NF Awareness Day, the Children’s Tumor Foundation (CTF) is driving that fight forward — not just by shining a light on NF, but by accelerating the science, the stories, and the solutions that are changing what’s possible.
This year’s campaign includes:
Shine a Light on NF: Hundreds of landmarks and buildings across six continents will glow in blue and green, the official colors of NF awareness, igniting a global conversation.
Educational Webinars: A session on Genetics & Reproductive Options in NF took place on May 8, with a second on Breaking Barriers in NF2-Related Schwannomatosis Research coming up on May 22.
“Big Questions about NF” Video Series: A new series hosted by NF nurse and patient educator Kate Kelts, RN, BSN, offering clear, compassionate responses to the most common questions families ask after diagnosis.
10 Years of “I Know a Fighter”: This milestone year celebrates a decade of honoring the patients, researchers, families, and supporters who are changing the future of NF, one story at a time.
Research Momentum: From the recent FDA approval of Gomekli — the second-ever treatment for NF1 and the first available to adults — to expanding clinical trials and industry interest, breakthroughs are happening.
Take Action
That progress, however, is at risk. Recent federal research funding cuts threaten to stall new discoveries and clinical trials. The NF community has never stood still — and CTF won’t either. On this World NF Awareness Day, we’re calling on everyone to take action: share your story, raise your voice, support the research that will bring new treatments to life.
Turn One Gift Into Two
From May 17–22, donations to CTF are being matched by generous supporters — doubling your impact to accelerate NF research and bring new treatments to patients faster.
What is NF?
NF refers to neurofibromatosis type 1 (NF1) and all types of schwannomatosis (SWN), including NF2-related schwannomatosis (NF2-SWN), formerly known as NF2. The condition affects 1 in 2,000 people of every background and impacts each person differently — often with symptoms such as blindness, deafness, chronic pain, or cancer.
