It Was Time That I Stop Ignoring the Thing That Made Me Most Unique

By Heather McKelvie In 1996, my mother and I went the Family Conference, which was in St. Louis that year.  Looking back, I don’t remember very much about it.  Perhaps because I was a teenager, I was in denial about the fact that my EEC was a life-long condition that I would always have to deal with. …

Meet the Kelsos & Huxmans!

The Kelso and Huxman families met in 2006 at the NFED Family Conference in St. Louis. Both have children affected by EEC syndrome and they found an instant connection with one another. Before that conference had ended, they were finishing each other’s sentences; their children were referring to themselves as “cousins”; and they were making…

A Doc’s Perspective on the NFED Family Reunion (aka Family Conference)

By Alanna F. Bree, M.D., NFED Scientific Advisory Council Attending the NFED Family Conferences are almost like a family reunion for me.  Even though I am not related to anyone who attends, the people I have met through the NFED have become like an extended family to me.  This includes babies, children & adults affected by…

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…