January 17, 2009
I had been looking forward to this day for months. Ten children and 3 adults with Sturge-Weber Syndrome along with their families gathered at an event I planned for us in Pasadena on Saturday. There were 48 people who attended.
I met many new people and reconnected with a few I hadn't seen in a while. It was an unbelievable feeling to meet people for the first time and feel like we were family.
The venue was a place called Kids Klub on 380 S. Raymond Ave. in Pasadena, CA. This place was perfect because it kept the kids occupied and gave the adults a chance to chat. We shared our experiences and I learned some things I didn't know about the syndrome. We were there for 4 hours and it went by too fast. I can't wait until we do it again next year. Probably at the same place.
Click HERE to see photos from the event. Click HERE to watch the news segment.