In Depth: Neurofibromatosis Awareness
RALEIGH-- It's a genetic disorder that doesn't discriminate, affecting men and women, young and old and people of every race and ethnic background. We go In Depth with the executive director of the NF Tumor Foundation for a look at how they're working to raise awareness and find a cure for neurofibromatosis.
Neurofibromatosis is a genetic disorder that causes tumor growth throughout the body on the nervous system. It affects about one in 3,000 people and does not discriminate.
There are three types of neurofibromatosis, including NF1, NF2, and schwannomatosis, and they can be caused by a wide array of problems including learning disabilities, developmental abnormalities, auditory/visual impairment, pain from pressure of tumors, social stigma due to looking “different” and higher risk of cancerous tumors. Symptoms of neurofibromatosis can appear at birth, during childhood or after puberty, depending on the type of NF, and unfortunately, right now, there is no cure.
But the NF Tumor Foundation is working to raise awareness and find a cure. The volunteer-run organization's goal is to provide information, support and awareness. They say they want everyone to know about NF and want to make sure that no one has to deal with this disorder alone.
Founded in 1979, the group helps connect individuals and families with local support communities along the East Coast. This year their mission expanded to have global reach, the first international connection is with WatisNF in the Netherlands.
The non-profit also offers key programs like House Calls. Individuals diagnosed with NF speak to university groups, medical students and doctors via Skype to educate them about the disorder and its effect on patients. They also offer community awareness events like walks, runs, golf tournaments and community socials. On March 27, they're also offering a Golf Tournament at Lonnie Poole Golf Course.
Support groups are also in place to help people and their families affected by NF find places to meet, share experiences and socialize in a safe and comfortable environment.
If you would like to learn more about the NF Foundation, volunteer or help find a cure, visit their website.