Neurofibromatosis Awareness: Children’s Tumor Foundation (CTF.org) · NF Network.org · NF Northeast · Living with NF (TumorTalk) · Donate
Source: Children’s Tumor Foundation
Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on the nerves anywhere in the body at any time. This progressive disorder affects all races, all ethnic groups and both sexes equally. NF is one of the most common genetic disorders in the United States (one in every 2,500 to 3,000 births), affecting more than 100,000 Americans and 2.5 million worldwide.
Neurofibromatosis is not contagious. Approximately 50% of those affected with NF have a prior family history; the other 50% are cases that are result of spontaneous genetic mutation. Individuals who do not have NF cannot pass it on to their children.
The effects of NF are unpredictable and have varying manifestations and degrees of severity. There is no known cure for any form of NF, although the genes for both NF-1 and NF-2 have been identified. However, the U.S. Food and Drug Administration (FDA) has approved Koselugo (selumetinib) for use in patients with inoperable plexiform neurofibromas, a common manifestation of NF1. The approval is a major milestone as it increases potential for successful tumor reduction.
The CTF.org-sponsored video series Tumor Talk, hosted by McKinnon Galloway (who has NF2) and Aidan Fraser (NF1), has begun its second season with additional panelists Laura Barbieri (NF2) and Dan McAvoy (NF1) to talk about what it’s really like living with neurofibromatosis: overcoming obstacles like dating, traveling, bullying, MRIs, and generally navigating the world.