Our Family’s Life-Changing Day

X-rays showed that he would have no teeth at all on the bottom front, and very few elsewhere. How could that be? Read how the Williams family found a diagnosis and a new family.

Children Don’t Need Teeth?

Kevin Koser doesn’t think he should have to explain to his son with ectodermal dysplasia that he can’t have teeth because health insurance companies don’t feel teeth are necessary. So, he’s taking action and getting others to join him in advocating for the Ensuring Lasting Smiles Act.

Bridges to Inspiration

I spent a good part of Sunday walking around Portland, Ore. and reflecting on the 2018 National Foundation for Ectodermal Dysplasias (NFED) Family Conference. People passing me likely thought I was in another world. I was smiling and laughing as I strolled along the river walk.  One person stopped me and said, “Wow! You must…

Tales of the Fire Breathing Dragon

Christine Gottschalk found it heard to hear that her perfect son had ectodermal dysplasia. Worse was learning insurance wouldn’t pay for his care. It made no sense to her that some day, her son may have to choose between paying for his dental care or paying for a college education. She decided to take action and invites others to advocate with her.

Aubrey’s Story

Aubrey Stratz is your typical four-year-old girl who loves dancing, unicorns and dressing up as a princess. She’s happy and healthy. She adores her big brother, Max. What’s not typical about Miss Aubrey is the rare condition that affects her, hypohidrotic ectodermal dysplasia. What’s even more interesting is that her her dad was diagnosed, too, but has no symptoms.