Four Research Opportunities at the National Family Conference

Families attending the 2012 National Family Conference in Orlando, July 18-21, have the opportunity to volunteer for the four projects listed below. To participate, sign-up on the 2012 national family conference registration form. You will receive your assigned research times when you check-in at registration on Wednesday, July 18th at the conference. Questions? Email Mary…

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. …

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…

Finding Money to Help Pay Your Family Conference Expenses

With a little searching and networking you can find money to help you attend a National Family Conference.  Many families have been successful in obtaining funding from the sources below.  It takes internet searches, phone calls and persistence.  Call and ask about conference funding for families with special needs.  If you hit a roadblock, ask…

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…