Evan’s Story

By Karen Forman My favorite quote of late has been Life isn’t about waiting for the storm to pass.  It’s about learning to dance in the rain. Thirty-three years ago, I was not that wise.  Now I dance. Evan is a smart, engaging and talented adult with a unique beginning into this world.  So, Evan…

How This Teen Takes On Life With Ectodermal Dysplasia

By Kayte Speegle Hi. My name is Kayte. I am one of six in my family affected by hypohidrotic ectodermal dysplasia. I would love to say that it is “nothing,” but it is definitely a lot of something. My grandpa was the first of the family to be diagnosed with ectodermal dysplasia. Then, there was…