What is Neurofibromatosis?
From NF Network: Neurofibromatosis (NF) s 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). The neurofibromatoses affects more than 120,000 Americans.
NF has three genetically distinct forms: NF-1, NF-2 and Schwannomatosis. They are caused by different genes and chromosomes. 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.
NF is an autosomal dominant genetic condition; it is not contagious. Approximately 50% of those affected with Neurofibromatosis have a prior family history of NF. The other 50% of cases are the result of spontaneous genetic mutation. If an individual does not have NF, s/he can not pass it on to his/her children. (https://www.nfnetwork.org/understand-nf/what-is-nf/)
How do you advocate for NF?
I live by a personal life ethos to “Love my neighbor”. I love Jesus, therefore, I love my neighbors. The NF Community is a very special neighborhood, and one that I am a member of! Advocacy includes so many things, from meeting with leaders at Capitol Hill to discuss federal funding for NF research, talking to researchers and other stakeholders, participating in studies, listening to others’ stories to gain a broader understanding of lived experiences, working to raise funds, sharing my own story, or just being a good friend. There are so many ways to make NF more visible and to work towards real actions that reduce suffering in this community and I know the impact reverberates to improve ALL lives. NF advocacy is a privilege and a passion, NF is VERY challenging to live with, but advocating for myself and others is empowering!
Where Can I Learn More?
Curious? Good! Check out the Friends link to visit sites to discover SO much more than I can ever share!
