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!
George Keeble beats Medical Condition! UK Story!
Meet George, an actor who just earned a place at National Youth Theatre in London. Great story from the UK, “When I am performing my condition doesn’t hold me down. I can be anything I want to be and I want to show everyone that.” Read about it here!
Hope… from a mouse
As I sat and listened to Dr. Maranke Koster speak, yesterday and this morning, about the process of turning skin cells into induced pluripotent stem (iPS) cells, I was beyond amazed… I was filled with hope. Hope… from a mouse. If you had told me thirty years ago that I would one day look at…
Meet the Kelso’s & Huxman’s! Who are they???
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…
Why attend a National Family Conference II by Rachel Dahler
Hello NFED Family! My name is Rachel Dahler, from Cleveland, Ohio, and I am a 22 year old with HED. The NFED has been a huge part of my life since I was 6. That is when I attended my very first conference in Grand Rapids, Michigan. Since then, I have been to close to…
Legendary New Zealand Skateboarder Levi Hawken
Levi is affected by Ectodermal Dysplasia, but that does not deter him from doing what he loves most: Skateboarding. Check out his video. Wow! Amazing! https://tvnz.co.nz/20-20-news/week-june-23-4247765/video?vid=4260470 Happy Viewing! Enjoy!