Diagnosed most often in children and young adults, Neurofibromatosis (NF) occurs worldwide and in all races, ethnic groups and both sexes. It does not discriminate. Not a contagious disease, it is best described as a set of complex genetic disorders affecting almost every organ system, causing tumors to grow on nerves in the brain and throughout the body.

  • Neurofibromatosis Type 1 (NF1) ranks among the world’s most common genetic disorders; it manifests itself in about one of every 3,000 births — making it believe it or not, more widespread than cystic fibrosis, hereditary muscular dystrophy, Huntington’s disease and Tay Sachs combined.  {link bolded copy http://www.ctf.org/understanding-nf/nf1 }
  • Neurofibromatosis Type 2 (NF2), occurring in about 1 out of every 40,000 births is significantly less common than NF1, but a concern none-the-less. {link bolded copy http://www.ctf.org/understanding-nf/nf2 }
  • Schwannomatosis is the rarest form of Neurofibromatosis. Affecting approximately 1 in 40,000 people it has only recently been recognized and does not have a clear pattern of inheritance.  {link bolded copy http://www.ctf.org/understanding-nf/schwannomatosis }

Half the children who develop NF1 or NF2 inherit it from a parent. Others are afflicted by the chance result of a spontaneous change in a specific gene in an egg or sperm cell. Every person affected by NF1 or NF2 unfortunately has a 50% chance of passing the condition on to their offspring. Schwannomatosis is less well understood, but most of these cases reportedly appear to occur by chance, not because they are inherited.

Children’s Tumor Foundation

What can you do?

If a family member has NF, then you should be aware of The Children’s Tumor Foundation. It fosters collaboration among research leaders and clinicians so that the latest and most advanced information is disseminated among medical professionals and the public.

Considered also the leading nonprofit funding source of NF research in the world, Children’s Tumor Foundation celebrates May as NF Awareness Month (and World NF Awareness Day on May 17th) to put NF in the national (and international) limelight, to foster hope in the NF community, and to create fundraising opportunities for innovative NF research. {link to bolded copy http://www.ctf.org/ }

Among the projects is “Shine a Light on NF.” This brings NF awareness into the community by lighting up buildings, bridges and monuments in blue and green. In 2017, 159 landmarks across the country and around the world were lit up!  

Activities here in North Carolina can be found at these locations:

  • Ally Bank, Charlotte
  • NASCAR Hall of Fame, Charlotte
  • Southpark Towers Fountain, Charlotte
  • The Vue Charlotte, Charlotte
  • Wells Fargo’s Duke Energy Center, Charlotte

If you wish to volunteer for NF Awareness Month 2018, outreach has been made even easier with new tools. Check out the info page. {link to bolded copy http://www.ctf.org/get-involved/shine-a-light }

To find a doctor specializing in Neurofibromatosis, contact: University of North Carolina Hospitals
UNC Hospitals Neurofibromatosis Clinic, Chapel Hill, NC or Duke University Medical Center
Duke Comprehensive Neurofibromatosis Clinic, Durham, NC.

This article was written by Anthony Scialis, Content Writer for Customer Engagement Specialist. You can follow Anthony on LinkedInTwitter, or find him blogging about social media marketing on WordPress.