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!…

What do your Family Conference fees actually pay for?

Basically, all your fees pay for is your food. We solicit sponsors, grants and use general donations to fund room rentals, speakers’ (12-15 unbelievable docs and dentists donate their time each year) and staff travel, scholarship recipients, off site activities, AV rental and childcare costs.The NFED absorbs 75% of the cost of the event. The 2012…