Two Questions… How will you answer?

By Mario Adamo from Zurich, Switzerland Family Conference Volunteer in  Columbus, Ohio Do you remember the movie “The Bucket List”? There were those two individuals, both condemned by cancer, sitting above a pyramid, talking about ancient beliefs. For every soul knocking on paradise’s door, the Gods held two questions: “Did you find joy in your…

When Life throws you a Lemon, make Lemonade!

By Henry and Catherine Bourgin Twelve-year old Henry is affected by XLHED, as is his mom, Catherine. They live in McLean, VA. Henry would like to share his thoughts on having a lemonade stand with baked goods during summer break: “When I’m at the lemonade stand, we like to talk to each other and when other people come we’ll have conversations….

Struggling to survive with ectodermal dysplasia

By Vinesh Parekh Hello. My name is Vinesh. I am from India but currently live in Canada. I am 27 years old and have ectodermal dysplasia. I don’t have sweat glands. For me, having no sweat glands is a handicap. I moved to Canada two years ago because the temperature is cooler. In India, I felt as though I had no life because summer stays for most of the…

Camp Discovery to the Rescue!

By Lindsey Higgins When I was six years old, I was officially diagnosed with ectrodactyly-ectodermal dysplasia-cleft lip/palate syndrome, also referred to as EEC syndrome. As most of you already know, EEC effects one’s teeth, hair, nails, sweat glands, tear ducts and skin. After feeling alone and confused most of my life, and uncomfortable in my…

Creating Connections of Hope and Comfort

By Rachel Buerman, NFED Liaison I am a pharmacist and my husband is a special education teacher with a license for both learning disabilities and emotional behavior disorders. For both of us it is important that we are comfortable reading, understanding and analyzing research articles and clinical trials that are published in professional journals. We…

Every Moment Has A Meaning

By Cory Jonak, Former Intern & Current Volunteer Throughout the course of our lives, we all will inevitably experience moments that have lasting impacts on us. While some of these moments are explicit and stand out, others can be more subtle and happen in an instant. However, no matter how small or big these moments,…

Ronan, Our Unborn "Celtic" Legend…What a Shock and a Joy!

By Dennis Claire, D.P.M., Father of Denny and soon to be Ronan Well before she was pregnant, my wife said, “If it’s a boy, he’ll be named Ronan.”  Our first son, Denny, had a name which was predestined through generations of naming a son in the family Dennis. I didn’t want to break Irish tradition, and…

Overwhelmed With Love and Belonging!

By Terri Andrews I was born in a little rural area in Alabama in 1959. Not much was known about ectodermal dysplasia nor the type of ectodermal dysplasias I was born with called ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. If I received any type of major treatment or surgery, I had to travel at least 100 miles, which was not…