Conference Means Knowing My Son is Not Alone

by Jennifer Hagerty With the National Family Conference fast approaching, I find myself reflecting and thinking about how much fun it would be to attend. Joshua is almost four years old and already knows that he has ectodermal dysplasia/AEC syndrome. He does not quite understand it but he knows it makes strangers gawk, point, whisper,…

Meet Caitlin Sarubbi, Our Family Conference Motivational Speaker

Hello! My name is Caitlin Sarubbi, and I was born with ablepharon macrostomia.  This syndrome left me legally blind, partially hearing impaired and have undergone over sixty-two reconstructive surgeries to date.  However, 22 years later, I am an undergraduate at Harvard University, studying social and cognitive neuroscience, and a Paralympic ski racer, who competed in…