Nicholle was searching for someone who understood what it’s like to always smile with your lips closed so people don’t see your missing teeth. Who know how frustrating it is to visit dentist after dentist trying to find someone who actually wants to treat you. Were there adults out there who know the pressure of trying to find more than $30,000 just so you can have teeth to bite into chicken with? Read her story to learn about her search and how she’s relieved to no longer feel so alone.
Caring for Our HED Baby Down Under
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.
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.
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.
Raising a Strong Daughter with HED
Leah Steenson was worried and scared when her daughter was diagnosed with ectodermal dysplasia but that all changed when she found the NFED. Find out how she’s teaching her happy kindergartener to speak up for herself and explain her condition.
Underrated Basketball Star with HED Excels on the Court
Jacobi Sebock’s killing it on the basketball court and getting attention from the likes of NBA player, Steph Curry. He excelled in both basketball and track his senior year, not letting his inability to sweat hold him back. Watch this All-State athlete dunk and find out the big dreams he has.
Advocacy is Something We Are Meant to Do Together
Morgan Rigsby is the kind of mom who wants to model the behavior she wants her kids to have. That’s why she’s become a passionate advocate for the Ensuring Lasting Smiles Act. In our Volunteer Spotlight, Morgan talks about what volunteering has taught her, how she celebrates the small victories with her son, and why you need to be open to sharing your story.
How to Prepare for and Live Your Best Sweat-Free Life
Marathon runner Adam Viccaro shares his four rules for overcoming challenges – like not sweating – to accomplish more than you ever thought possible.