NF2 Smile Project Event
Have you ever wondered what you would do if you lost your smile? Most likely not. To those who have lived that thought, know how important it is to every aspect of their lives. A friend who has personally went through this is now trying to help and educate others with Neurofibromatosis 2. Neurofibromatosis 2 is a genetic disorder which causes tumors to be formed along the nervous system. This can cause a range of problems ranging from hearing loss to paralysis. Most operations are only there to prevent more damage from happening rather then being a positive impact. One of the most harrowing side effects of either the tumors or an operation is facial paralysis. This psychologically destructive problem is now almost curable with a radical new procedure.
The nf2smileproject was created for people with NF2 to have the ability to smile again. It was started by Aaron Coulter, who had partial facial paralysis due to proton beam radiation. After a few years of this he was approached by a plastic surgeon, Dr. Tessa Hadlock in Boston, MA who gave him his smile back. After partnering with Kristina Diaz, Tracy Galloway, and Rebecca Hudson they founded The NF2smile project to help improve the quality of life with NF2. Most operations for Nf2 are only there to prevent more damage from happening rather then having a positive impact. One of the most harrowing side effects of either the tumors or an operation is facial paralysis. This can, for most, be a psychologically and often physically debilitating situation that can now almost be undetectable with a type of plastic surgery now being tailored for NF2 patients. This surgery was originally created and still used for any type of facial paralysis ranging from bells palsy to a stroke. The type of surgery that a patient undergoes will be individualized depending on the details of that person. Given its complication and rarity there are only a few clinics in the United States that are able to perform it. Knowing first hand how disheartening it can be not to smile we here at nf2smile believe that everyone who wants this operation should be able to have it. Unfortunately the surgery is too expensive for us to cover all of the costs; however we will help support any expenses that we can ranging from travel costs to some medical billing.”
Help Stop NF2 was founded to help bring awareness and finances to finding the cure. The subject of facial paralysis hit close to home for Harley and Rebecca Dufek who generously invited the smile project to join them allowing for full fledged non-profit status. Together they hope to bring a positive impact on those with NF2.