Welcome to my event page! I created this site, as well as the event it's promoting, because I am obsessed with fighting NF2, and with good reason, since I have it.
Due to a genetic mutation in one of my chromosomes, my body grows benign tumors, mostly on the brain and spinal cord.
These tumors will cause NF2 patients, like myself, to experience numerous neurological issues including hearing loss, vision impairment, balance issues, trouble swallowing, impaired facial function, speech difficulties and many others. (Disease is hell on my golf game)
Personally, I've been very lucky when it comes to NF2 and the issues it has caused me. I am deaf, since 2008, I have less than optimal balance, a winged shoulder due to a spinal tumor, small cataracts in both eyes, and some other minor issues. It's kinda of messed up though that my situation is considered "lucky" but it's the truth, I have many friends with NF2, who have had to endure much worse circumstances..
I built this site for numerous reasons. For one thing, I wanted a place to really promote my event and demonstrate what we are up against as NF patients.
It is truly up those of us in the NF community to do what we can to both NF more visible, and generate research funding.
For me, hosting a golf outing just made the most sense. I love to play golf, (played the night before my first brain surgery at a course in Pasadena right next to the Rose Bowl) but it's a challenge when you have a disorder that affects your balance, coordination, range of motion and depth perception. Despite the challenges I still love to get on the course, because I absolutely refuse to give NF2 the satisfaction of keeping me from doing something I love.
So I hope you can join us at Oak Brooke, on July 15 when we beat NF with golf clubs. Hope to see you there!