Neurofibromatosis affects more people than cystic fibrosis and muscular dystrophy combined yet most people have never even heard of it. We are trying to change that! NF’s virtual anonymity in the eye of the general public has limited our volunteer development, fund raising capabilities and, more importantly, our ability to effectively serve as a resource to newly diagnosed NF patients and their families.
Determined to make neurofibromatosis a household word, we have launched an ongoing public awareness campaign using #TheWordIs and encouraging people to say the word!
We conduct numerous educational, social and fundraising events throughout the year and we sponsor and attend medical conferences.
We also look for other opportunities for media exposure such as the “Neurofibromatosis Awareness Month” proclamation signings by all of the Governors in the Northeast.
We also created the “Beauty Mark Nation”. In a lighthearted and fun way the Beauty Mark Nation will command public attention, challenge public perception and create a high degree of visibility for the NF cause. This bold commitment will ultimately bring us closer to the cure for NF! Get your tattoos and help us spread awareness and get people to talk about neurofibromatosis.
