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 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…
We Gained Empowerment, Education and Emotional Support
By Craig and Julie Claeys Our son is affected by HED and is now 17 yrs. old. We have been attending Family Conferences since 1996 and have not missed but a few. Since our first conference in 1996, we found attending was so beneficial for our son and us as parents to be able to…
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…
A Different Normal: Living with a Chronic Condition.
Jack Kriz was our guest blogger on WebMD. Read Jack’s story in growing up with EEC syndrome and his motto of “Use What You Got.” His blog is the first of several we will be posting in the upcoming year in the Chronic Conditions blogs on WebMD as well as on Gateway to the NFED blog.
Irving, Texas Man Can’t Sweat, But It’s Cool By Him!
Lee Goggin was featured in an article in the September 5th Dallas Morning News issue. Texas had a brutally hot summer this year. Read how Lee survived the heat. What an inspiring story!