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….
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…
The True Meaning In Life Is To Plant Trees, Under Whose Shade You Never Expect To Sit!
By Ashli Matus-George Allyson Kelso’s Aunt Founder, Rally for Ally When Ally was born on December 22, 2004 in Oxnard, CA, it was an exciting time. A new baby, Christmas for her three-year-old big sister, Morgan. My then fiancé, Tom, and I were recently engaged and planning a wedding, Kristin had a thriving career, and…