Neurofibromatosis Awareness: Children’s Tumor Foundation (CTF.org) · NF Network.org · NF Northeast · Make NF Visible · Donate
Neurofibromatosis (NF) is a group of rare genetic disorders that causes tumors to grow on nerves throughout the bodythat can lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and cancer. NF affects 1 in 3,000 births, and 2.5 million people around the world.
While NF affects all populations equally, it manifests differently in each patient. Those with visible signs of NF struggle to be seen as more than just their diagnosis, while people 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 of the Children’s Tumor Foundation (CTF) .
Make NF Visible focuses on the external things the NF community is doing to raise the profile of a 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.
Chances are you know someone with NF and may not know it, because they’ve kept their diagnosis hidden,” said Simon Vukelj, Chief Marketing Officer of the CTF. “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 something or someone important in their lives.”
A captivating part of the campaign is the Make NF Visible video gallery, a collection of first-person stories from patients living with neurofibromatosis. Honest and raw, these videos capture what it’s like to live with the rare disorder, the nuance of the visible and invisible aspects of NF, and how expanding awareness is changing perceptions and changing lives.