May is Neurofibromatosis Awareness month

[Biophilic]

1. A million years ago, give or take a few, when I was in 8th or 9th grade

my father had to give a speech. It was very, very prestigious and he was asked to give the talk because he was one of only a handful of people who were considered authorities on the condition. I remember night after night, at the dinner table, listening to him talk about his speech and how it was going. It was NEVER NF, only 'neurofibromatosis' pronounced fully and correctly. My brother, sister and I had to learn to say it correctly. I think it went on for several months. No one else had ever heard of it. Now it has a month. Hopefully, all this means is that there is a lot of support and help for patients and their families.

I'm really sorry to hear about your son. You have my sincerest thoughts.