Our story of parenting our son, Ruben, during his first year is one of instinct and intuition, as we didn’t know until 16 months that Ruben’s collection of features amounted to something called hypohidrotic ectodermal dysplasia (HED). There’s no known ectodermal dysplasia in our families. We’d been asking all the right questions about our fluffy-haired, dry-skinned, hot-bodied babe, but it wasn’t until I mentioned our son’s toothlessness to his older brother’s dentist, that an answer was offered.
The Smile That Means The Most to Me
Jayden Clark’s skin as a baby was so fragile at one point it caused a life threatening infection. Even small brushes of his skin could cause it to breakdown. Now 19, Jayden is a thrill seeker! Learn more about his extensive medical journey, his passions and the special message he has for others with ectodermal dysplasias who find it hard to smile.
Remembering Mary K. Richter With Great Love
Our hearts are heavy. The matriarch of our National Foundation for Ectodermal Dysplasias (NFED) family, Mary K. Richter recently died. We know this has come as a shock for our community. Amidst our profound sadness, join us as we remember this incredible woman.
Incredibly Grateful for So Many Things This Year
This week, we celebrate Thanksgiving. On my daily walks, I’ve been thinking about this year and how much we truly have to be grateful for as an ectodermal dysplasias community. Having gratitude can really shift our perspective on life and help us feel hopeful. I know it does for me. Join me as I look back on 2022 and just a few of the wonderful things that took place at the National Foundation for Ectodermal Dysplasias (NFED).
Unreliable Electricity Makes It Hard to Stay Cool in Cuba
Liliett Alarcon’s home in Cuba is filled with the joyful sounds of Caribbean music when her son is playing his drum set. But the Caribbean weather—very hot and very humid—can be tough at times for Manuel since he doesn’t sweat. Learn how Manuel is coping and how his mom. doctors and community support him.
Committed Advocates Inspire Action in the Senate
With about six weeks left in the 117th session of Congress, the mood on Capitol Hill feels hopeful and positive for getting the Ensuring Lasting Smiles Act (ELSA) passed! Team ELSA participated in our third virtual Advocacy Day this year. Find out where things stand on the bill and how you can help.
Why I Volunteer
Find out what happened to Jack Kriz when he was 50 years old that finally made him feel whole, and why he always says yes when the NFED asaks for his help.
New Guide to Help With Your HED Baby’s First Year
We’re excited to share with our community a new guide to help families navigate the first year of life for their baby affected by hypohidrotic ectodermal dysplasia (HED). It’s a wonderful resource whether HED runs in your family or you’re brand new to the disorder.