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,…
Are you a Repeat Offender?
Charley Richter has attended 27 NFED National Family Conferences and Anil and Sean Vora have both attended 25. How close are you to reaching them? We will recognize our “repeat offenders” during Wednesday’s opening session. If you have attended at least five conferences, be prepared to be recognized!
The Value of a Family Conference
By Rachel Buerman The NFED Family Conference has been an invaluable experience for us. We attended our first conference in Colorado 2010. For the first time since Jordan was born we felt at home. We learned more from other families in 3 days than we had learned from our local doctors in 2 years. NFED…
The Talent Show is the Highlight for Me
I attended my first NFED National Family Conference in 2009 when it was held in Williamsburg, VA.. Immediately upon going through the doors, I felt a sense of welcoming and family even though I had never met anyone before. Until my daughter was born in 2007, I had never met or even spoke to anyone…
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…