May 21, 2013 \ Geoff Birmingham
May is Neurofibromatosis Awareness Month

May 21, 2013. This guest post is from Matt Ferrucci, who is a student at Boston College. He’s spending the summer at Reflection Films, learning a little about video production and marketing. 

May is NF Awareness Month, so it is entirely appropriate not only to spend some time thinking about it, but to talk about it as well. If you don’t know what NF is, you’re not alone. Despite being one of the most common genetic conditions, neurofibromatosis is unknown to most people. It causes tumors to form along the nerves of the body, interfering with nerve function and often causing severe pain. Despite its seemingly esoteric name and apparently low rate of appearance, NF actually is more prevalent than Muscular Dystrophy and Cystic Fibrosis combined.

For more specific information on neurofibromatosis, take a look at nfincne.org. NF Inc. Northeast is heartily devoted to spreading awareness of this condition, which has somehow largely flown under the radar, except for those directly affected by it in some manner or another.

Besides being NF Awareness Month, May contains a high density of events designed to increase awareness and raise money. As mentioned on the website, there are three different forms of NF. On May 26th the Buffalo Marathon will be held in order to raise awareness about NF2. Specifically, the money gained through the event will go toward people such as Leah Manth, a 12-year-old girl who has endured multiple surgeries and must deal with the consequences, which include an inability to smile due to facial paralysis.

Also upcoming are the 28th Annual NF Golf Tournament (June 17th) and the Falmouth Road Race (August 11th). Each event provides an opportunity to spend a little of your time helping those who are trying to lead a normal life despite the fact that they must cope with NF. And the best part is that you’ll have a lot of fun doing it.

I’d also like to draw your attention to Beauty Mark Nation, another organization desperately working to heighten awareness and knowledge of the condition. Beauty Mark Nation, now that it’s May, is offering a package of 20 temporary tattoos for $10. A simple stamp on your arm might prompt someone to ask what NF is, which might lead to another invaluable donation.

Check out both of these websites. If nothing else, you’ll learn some valuable information about a genetic condition that most people have never even heard of.


Sign up to receive our blog

Enter your email and stay on top of things.