Jalen’s EEC Syndrome Story: Why Challenges Don’t Define Her
Jalen’s EEC syndrome story is filled with honesty, humor, and heart. She shares how she handled hair loss, bullying, and everyday challenges while building confidence along the way.
Small NFED Fundraisers, Real Impact
Our families have found creative ways to fundraise for the NFED doing things that they love. Find out how they made friends, built community, and raised awareness along the way. Get inspired to have your own small fundraiser and make an impact!
Dr. Clayton Butcher Credits Families for Teaching Him About Ectodermal Dysplasias
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.
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.
From My Heart to Yours: Reflections as I Step Into Retirement
As Mary Fete prepares to retire, she looks back on an amazing journey with the NFED community. From nervous first days to unforgettable Family Conferences, she says she’s been inspired, challenged, and blessed. Join her in celebrating the people, moments, and progress that made her experience unforgettable.
Honoring Mary Fete’s Legacy of Love and Impact
Mary Fete is retiring after years of leading the NFED with heart, courage, and big ideas. She helped grow research, support families and strengthen programs. Read how her hard work and kindness shaped the NFED and why her legacy will guide our community for years to come.
Wigs
Deciding whether to wear a wig is a personal choice. Some kids and adults feel fine without one, while others find that a wig helps them feel more confident in social situations. Never force your child to wear a wig. Just giving them the option can help them feel more in control and empowered. “Wigs…
Celebrating 25 Years of the Halloween Bash Community
Celebrate 25 years of the Halloween Bash with us! This amazing event started as a party and grew into a huge community of families and friends helping the NFED. Come learn how it sparked big changes, supported research and brought people together. Read how this fun event made a huge difference for people affected by ectodermal dysplasias.