My son was first diagnosed with NF1 when he was two years old (he’s now 12). He had a seizure and that's what led to him having an MRI and finding spots on his brain. He had shown signs previously with the café-au-lait spots, but his pediatrician at the time was not familiar with NF and did not recognize that was a symptom.
By Bailey Archer
It started when I was 12 years old. At least, that’s how it felt. Even though I have had this my entire life. Around the time school was out for the summer, I visited a doctor and found out I had this. Now, you’re probably asking yourself: “What is ‘this?'” Well, let me tell you. This ‘thing’ I have is a disorder called neurofibromatosis. Long word right? We also call it NF, so it’s easier on those who can’t pronounce it or spell it. It took me a long time.
On January 20, 2018, the second annual Two Counties, One Cause basketball tournament will take place at Tappan Zee High School in Orangeburg, New York. This charity tournament brings together basketball teams from all over Rockland and Westchester Counties for an evening of basketball competition in the name of NF awareness. Last year, the event raised over $14,000 for NF research.
Tappan Zee High School head basketball coach George Gaine is the driving force behind the charity tournament. Coach Gaine stepped off the court to tell us what inspired him to organize this event.
I was diagnosed with NF in the early 1970s, when I was about 17 or 18. There were a few bumps on me then, and my dear sweet late mother wanted to know what they were. A Navy dermatologist lived next door and knew exactly what neurofibromatosis was.
We at CTF understand that not everyone living with NF is able to be seen by an NF expert on a regular basis or attend NF Forums, symposiums, or conference. With that in mind we are excited to bring you this webinar series!