Planning a party or get together is work. Planning one for people you may have never met before can be even more daunting! But not for two of our Family Liaisons who hosted our inaugural NFED @Home events. These are our newly established informal family gatherings that we hope to take place throughout the United States. Julie and…
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…
Conference – Where You Can Always Come Home to Your NFED Family
This year’s Family Conference is a Homecoming, meaning a place where you can come home to your NFED family. You will find people who will welcome you with open arms. You can rekindle friendships made long ago. You’ll remember the fun had at previous Conferences and make new memories. Home is the soft place you…