Next year the little people conference is in Baltimore, Maryland and I am already planning to go. Not only am I planning to go I am advocating (and hoping) to get many of the other families with Saul Wilson Syndrome to attend. My goal is to get as many families together as I can and this will be the first time that all of us will be together as a group!
When I first found the Primordial group there were only a few families to start off. The group was so small, that our first meeting was in a single hotel room. I remember meeting with these other families (and while I was in my early twenties) it was the first time I felt like a part of the little people group. They made us feel welcome and I am so grateful to have found them as it helped lead me to where we are today with the research and I have met many friends in that group.
That is my goal with the families of Saul Wilson, I want them to be able to have that support system. It truly is a great thing to have other families to talk with and share stories and be able to meet with at conventions and meet friends.