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.
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.
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.
Pamela Keeps Dancing Through Life’s Challenges
Pamela has faced vision loss, joint replacements, and countless medical challenges, but she’s never stopped dancing. It took her 40 years and research into her birth family to learn her medical history and diagnosis. Read how this inspiring grandmother keeps moving forward and encourages others living with incontinentia pigmenti to do the same.
Government Shut Down Doesn’t Stop ELSA Advocates
Even a government shutdown couldn’t stop our amazing ELSA advocates! More than 150 people met with lawmakers in Washington, D.C. Find out how NFED families and friends made big progress for the Ensuring Lasting Smiles Act on Capitol Hill! Learn how you can help keep the momentum going to get ELSA passed.
Rare and Remarkable: Boys with Goltz Syndrome
Ever wonder what it’s like for boys born with Goltz syndrome? This blog shares their rare and inspiring stories! Learn why they’re so unique, how the condition affects them, and how the NFED’s new resource helps parents through that important first year.