Dr. Clayton Butcher is that rare doctor who specializes in internal medicine and pediatrics. That makes him a great resource for individuals affected by ectodermal dysplasias as they transition from childhood into adulthood. Learn how Family Conference has impacted him as a doctor and in his career.
The Hot Kid Turns Ectodermal Dysplasia Into His Super Power
What if the thing that held you back became your greatest edge? From overheating on the soccer field to describing himself as “The Hot Kid,” Finnegan shares how he handled being bullied and transformed it into something positive.
NFED Funds Two Ectodermal Dysplasias Research Projects
The NFED continues to invest in research that brings hope to families. Two new $25,000 grants support studies on fragile skin in AEC syndrome and on dental bone health. Learn more about these studies and how they provide hope for better treatments for people with ectodermal dysplasias.
Five New Health Professionals Join NFED Councils
The NFED couldn’t do our work without caring doctors and dentists who share their time and expertise. We’re excited to welcome five new care providers to our councils. Their knowledge helps direct our research, shape our programs, strengthen our education, and support families affected by ectodermal dysplasias every day. Meet our new Council members!
Growing Up With Spray Bottles, Dentures, and Determination
Growing up with ectodermal dysplasia shaped my life in big and small ways—from fan-spray bottles on the playground to navigating dentures and surgeries. With unwavering support from my parents, I learned resilience, confidence, and how to live fully despite challenges. This is my story of strength, humor, and perseverance.
7 Reasons Why Youths Should Advocate for ELSA
Kids and teens have powerful voices and they can help change lives. Learn why speaking up for the Ensuring Lasting Smiles Act matters, how it affects real families, and how young advocates can make a big difference.
Putting People First: NFED’s New Executive Director Shares His Vision
We recently sat down with Greg Klimovitz, our new executive director as of October 2025, to learn what drew him to the Foundation, his vision, and how he hopes to build on the NFED’s success. In this Q&A, Greg talks honestly about why community is at the heart of everything we do. What are you…
The Tiny Dog with Ectodermal Dysplasia Who’s Stealing Hearts
Meet Piglet, a tiny dog with ectodermal dysplasia whose story will warm your heart. From fragile puppy to playful Instagram star, Piglet shows that even the smallest pups can overcome big challenges. Learn how she lives, plays, and inspires awareness for this rare genetic condition in dogs and humans.