What if a decision made decades ago could change your baby’s future? That’s exactly what happened in Jack’s family. From grandpa’s sweat-free childhood to baby Jack’s groundbreaking treatment, this story connects generations, science, and heart. You’ll want to read how one family’s bravery is shaping the future of XLHED.
Colt’s Small Dentures Make a Big Difference
Meet Colt, a little boy in Texas with a big smile. He’s the fourth generation in his family to be affected by x-linked hypohidrotic ectodermal dysplasia. From not sweating in the Texas heat to wearing custom-made dentures, his journey is filled with daily challenges. Read how the dentures have changed Colt’s life and how his mom is leading “Team Colt.”
How Music Helped Ally Blossom with EEC
Ally has never let ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome define her life. Thanks in part to the NFED community, music has helped Ally blossom into an inspiring young woman. She’s now on track to become a music therapist, where she’s sure to help and inspire countless others.
March Madness: Playing College Basketball When You Can’t Sweat
It’s March Madness! Think playing college basketball is tough? Try doing it without sweat glands! Jacobi doesn’t just play—he’s excelling, despite having XLHED. From figuring out how to regulate his body temperature to throwing down jaw-dropping dunks, his journey is nothing short of inspiring. Learn what he has to say to the next generation of athletes with XLHED.
How Crowns Boosted A Five-Year-Old’s Confidence
Brooklynn’s journey with ectodermal dysplasia led to a life-changing smile transformation. Read how her new crowns boosted her confidence and function, and how her parents navigated challenges to give her the best care possible. This inspiring story is one of resilience, advocacy, and the power of a radiant smile.
A Great Dental Team Makes All the Difference
Maddie’s journey with ectodermal dysplasia took a transformative turn when she expressed a desire to change her smile. With guidance from the NFED and a dedicated team of specialists, she found a path that preserved her teeth while boosting her confidence. Read her inspiring story of resilience and expert care.
You Wanna Be Where Everybody Knows Your Name: Family Conference 2025
The NFED Family Conference is more than an event—it’s where connections thrive, and worries melt away. Like the Cheers theme song, it’s a place “where everybody knows your name.” Don’t just take Kelley Atchison’s word for it. Listen as NFED families share the impact the Conference had on them.
Family Conference is a collection of stories of hope- we would love to see you there!
You Inspire Me: Cue the Happy Tears!
Let’s look back at joyous moments of 2024 brought to us by talented teenagers, a miracle baby, dedicated parents, a dad-daughter cycling team and others. From a clinical trial to personal milestones, their stories inspire and capture the heart of the NFED.