AS Family article,  FAST - Foundation for Angelman Syndrome Therapeutics

What the gala experience means for us

By Karen Hill
gala exp1
So my countdown to the 2014 gala is officially underway. Tickets? Check. Hotel? Check. Dress? Well, that usually happens a week before when I have determined I have no more time to lose weight before shopping. I am fortunate that this year will be my third year attending the gala, and it is just under three years since my son Logan (5 del+) was diagnosed.

Last year I was lucky enough to win a spot in the much-anticipated Colin Farrell meet and greet. As I stood in line anxiously for Paula to introduce us, waiting and watching the other families, I whispered to my husband, “that’s so and so, she has a five year old too, I recognize them from Facebook” and “they have a teenage daughter and live in California.” So many people around us I felt like I knew but had never met. Reaching the front of the line, the meet and greet entailed me smiling and nodding while my husband Todd chatted easily with Colin about our son. My lasting impression is that Colin is genuine, kind and truly cares and loves our kids.

The most powerful moment of last year’s gala for me was sitting in a room full of other parents, relatives and friends. You know – the people you don’t have to explain anything about your child to and that are not going to tell you that you look tired. This feeling is amplified as everyone attending quietly watches the Gala slideshow of all the individuals with Angelman Syndrome. It is telling how close I feel to the Angelman community that I can name so many of these children yet have never met them or their parents in real life. It’s exciting to sit at the table and wonder how many of the people you will get to meet. I am so grateful to the FAST board and especially to Paula Evans for providing this opportunity.

This year I look forward to hearing the latest from the FIRE initiative, actually taking a night off with my husband and getting to meet more amazing parents. I also really hope that this year my non-pregnant self will make it to my first after party!