Made With Love

With two young sons affected by hyphidrotic ectodermal dysplasia, Anissa Morgan has faced insurance denials, numerous hospitalizations, child care issues and finding doctors to treat them. That’s on top of learning how to care for their varied symptoms. But this determined mother has learned lessons along the way and is teaching her sons that they are well loved. Learn more here.

Share Your Story with the Press

Sharing stories with local press is a powerful tool to raise awareness about ectodermal dysplasias and the challenges many face getting the health insurance coverage they need. Christine Gottschalk details how families and individuals can raise awareness for the Ensuing Lasting Smiles Act through the press.

A Wild Yet Silent Thunderstorm

Heather Martin struggled to find answers after her son Isaiah did not fully develop teeth from birth. She was told by multiple dentists that his teeth should be capped, but she did not listen. Follow Heather’s journey as she fianlly finds the answers she was looking for in a diagnosis.

Running the Disney Princess Half-Marathon with EEC

Caitlin Brown was skeptical when her mom, Suzanne, wanted to join her in running the Disney Half-Marathon to raise money for the NFED. But she knew, there was no telling Suzanne, who is affected by EEC syndrome, she couldn’t do something. Find out how this mom-daughter duo did.

Family-driven Grassroots Action is the Answer

Jen Steele’s life was forever changed in 2012, when her daughter, Alli, was diagnosed with ectodermal dysplasia. Her family spent the next few years commuting 240 miles round trip to the University of Iowa to meet with geneticists, doctors and dentists. She discovered the National Foundation for Ectodermal Dysplasias (NFED) online and called for help and support. The Iowa mom quickly learned that Alli’s dental needs would exceed their financial abilities. She was not one to ask for help or be complacent and just accept the fact that their medical insurance would not cover Alli’s medical needs. With no political experience, the Steele family joined other NFED families in taking action to advocate for the Ensuring Lasting Smiles Act.

Struggling to survive with ectodermal dysplasia

By Vinesh Parekh Hello. My name is Vinesh. I am from India but currently live in Canada. I am 27 years old and have ectodermal dysplasia. I don’t have sweat glands. For me, having no sweat glands is a handicap. I moved to Canada two years ago because the temperature is cooler. In India, I felt as though I had no life because summer stays for most of the…

Managing Temperatures at Disney and Meeting Magical Friends

by Melva Jeter With the summer, comes the NFED annual Family Conference, this year in Orlando, Florida. Now, being from Colorado, I thought it was incredibly cool in 2010 when the conference was in Colorado Springs, but Orlando?  And so close to Disney World, Universal Studios and Sea World? This is a kid’s dream-come-true year!…