We Should Love Our Lives

Cyprian Katongo grew up in Zambia being bullied and dissed for having hypohidrotic ectodermal dysplasia. He endured the pain and asked God, “Why do I have this condition?” Find out not only how he endured but how he has triumphed and is sharing a message of love and hope.

Our Hero, Every Day

Finally getting a diagnosis of hypohidrotic ectodermal dysplasia for their 13-month-old daughter was a relief for Sam and Neil Gansebom. But, they still had all of these emotions. Where would they turn? What should they do? Read about how they are coping and what they are doing.

Fighting for Future Generations of My Family

Dylan Steyer is a three-year-old boy who simply wants to have teeth. He’s even asked his mom if he can have hers. Dylan only has 5 teeth due to hypohidrotic ectodermal dysplasia. Learn what his mom, Laura is doing to fight for his right to dental care.

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.