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…
We are so EXCITED to announce where our next three Family Conference will be held! Last year, we were on the East Coast. This year, we went to the West Coast. Our next stop is…
A teenager affected by ectodermal dysplasia speaks from the heart in this poignant poem. Can you relate?
Women affected by ectodermal dysplasias can experience symptoms that are specific to being female and can be sensitive to talk about. We have a new library resource that these women will find useful for vulvar and vaginal care.
We are your NFED team! We’re a mighty crew of six women. We couldn’t be more different. And that’s a good thing! But we are the same in one way. The most important way. The six of us are passionate about families affected by ectodermal dysplasia and doing what we can to help you. Since we typically get to learn about you, we thought it was our time to share. This is us.
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.
I recently read a meme that said you only have 18 summers with your kids, enjoy every moment. This moved me and got me thinking about how time is precious and should be cherished with our loved ones while we are here on this Earth. I reflected on my life and started to think about what kind of impact I want to make on my family and others when I’m not here. What do I want my legacy to be?
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.