Spot the Difference?

Mary Emma Roberts is now 12 inches of hair lighter! Mary Emma is six years old, but she began donating her hair to charities two years ago when she was just four. Already at this age, Mary Emma had eight inches of hair to spare. So, Mom, Kara Roberts, decided the time had come to…

Amelia’s Story With AEC Syndrome

Amelia is a teenager who is affected by ankyloblepharon-ectodermal dysplasia-cleft lip and/or palate (AEC) syndrome. When she was born, she had toes that were connected and a few other signs that were different. She started turning blue at two hours and lived in the NICU for months. She was suffering from chonal atresia. Maggie, her mom,…

Suzanne’s Story with EEC Syndrome

Suzanne lives in Pennsylvania with her husband, Will, and their children, Caitlin and Tyler.  Mom and son are both affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. This tenacious educator grew up never knowing that her symptoms were actually a part of a genetic disorder.  In this interview, Suzanne discusses growing up without a diagnosis, finding her…

We Volunteer So Others Don’t Feel Lost

by James Kluzek We were asked why we volunteer for the NFED. It all started November 16, 2000 when our daughter, Christina, was born with a genetic disorder called Goltz syndrome. This day changed our lives forever. We had never heard of this syndrome and more importantly most of our doctors knew nothing about it either….

Success: The Best Kind of Revenge

by Patrick Brenner High school is rough. With pressure from your peers to fit in, with pressure from your parents to behave, with pressure from the school to study hard, it’s a miracle any of us made it out alive. Some of us had an exceptionally difficult experience. I consider myself one of those. Back…

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…