We Are Flying High!

We just wrapped another life-changing, heartwarming, spirit-lifting Family Conference in St. Louis! What an amazing conference from start to finish. The conference started off with Jack Kriz riding his bike in from Kansas City. He rode 288 miles of bike riding in the awful heat. What dedication to do this ride to raise money for the…

Our First Conference

By Randi Walker I can still remember walking in to our first NFED Family Conference in Colorado Springs, Colo. Weston, our only child at the time, was three years old. Those first three years were quite difficult. Weston had experienced several symptoms of x-linked hypohidrotic ectodermal dysplasia (XLHED), but his doctors had never heard of…

We are Family! My Brothers, Sisters and Me!

By Chris and DeAnn Huxman In 2001, our second son, Tyler, was born with ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. We had never heard of EEC, had no information about it, and had no idea what the future would hold.  We didn’t know where to turn or where to find information. While searching the web for anything about EEC,…

Be the Change! Build our Community!

By Lea Richardson, Community Engagement Manager The NFED recently joined Pinterest and I have been amazed at the number of inspirational quotes for and about volunteers.  Some are so great in fact, that I thought I’d share some with you. Some quotes are words of wisdom while others can be attributed to the wise people…

Pay it forward! Share the Light!

By Dee Dee Olsen I have led a most beautiful life. I have been graced by God with loving parents, devoted sisters, brothers-in-law, six incredible nieces and nephews, treasured friends and a husband who embodies strength, hard work and consideration.  We brought three little people into this world. They breathed new dimensions of love and…