At 37, Cheryl Kingsford has been working for a lifetime to get the smile she radiantly beams every day now. Cheryl was eight years old when she was first diagnosed with ectodermal dysplasia but because of other issues going on in her family, the diagnosis was forgotten. It wouldn’t be till 22 years later that…
NFED Family Conference: Our Family Reunion
by Rachel Buerman Every year, we pack up the family and journey to the NFED Family Conference. We are not natural born travelers. In fact, when it comes to travel we might just be the next National Lampoons movie cast. Despite our chaotic travel skills, one thing is certain, the NFED Conference is always worth…
Ectodermal Dysplasia Didn’t Hold Back These 2016 Graduates
We congratulate the following individuals who graduated from high school this year. We knew you would enjoy reading about their accomplishments and the bright plans for their future. They don’t let ectodermal dysplasia hold them back from living their best life.
A Treatment for Corneal Erosions in EEC?
Corneal abnormalities are a major clinical issue encountered by patients affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. EEC is caused by dominant mutations in the p63 gene, meaning that EEC patients have one copy of the normal p63 gene and one copy of the mutant p63 gene. It has been suspected that removing the mutant p63…
FREE Things to do in St. Louis
If you are coming to St Louis before Family Conference or staying after…check out these fun things to do in St Louis. City Garden – Downtown: This outdoor garden includes art, plants and several water features. The water features include a splash pad and two wading pool areas. This is approximately a 25-minute drive from 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…
Summer Fun
Whew! Hot weather has arrived in the Midwest. We are enjoying a beautiful sunny day, bright sunshine and blue skies but it’s also hot and very humid. Hmmm. It might not be such a beautiful day if you or your kids don’t sweat. I remember the days when my kids would come in from outside, all hot…
Understanding Genetics
By Pilar L. Magoulas. M.S., C.G.C. All ectodermal dysplasias are heritable or genetic disorders, which means that they can be inherited or passed on to children. However, it is possible for a child to be the first person in his or her family to be affected by an ectodermal dysplasia. Chromosomes and Genes The body…