For Beth, the National Foundation for Ectodermal Dysplasias is more than support. It feels like family. Her new virtual fundraiser, Miles for Smiles, invites people of all abilities to move, share their stories, and help families affected by ectodermal dysplasias feel less alone. Read how one mom is turning connection into action this June.
Sam’s Story: From Idaho Football Fields to NFED Family Advocate
When I sat down with Sam and Jennifer Hicks over breakfast in Boise, it didn’t take long to feel the warmth this family brings to everything they do. Sam is a National Foundation for Ectodermal Dysplasias (NFED) family liaison, a husband, father of two, and someone who has spent most of his life refusing to let…
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.
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!
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.
Dr. Clark Stanford’s Inspiring Commitment to Families Affected by Ectodermal Dysplasias
Discover how a chance encounter with a young patient set Dr. Clark Stanford on a lifelong mission with the NFED. For more than two decades, Dr. Clark Stanford has combined skill, compassion, and heart to transform lives of families affected by ectodermal dysplasias. He’s the NFED’s Scientific Advisory Council chairman whose journey shows the powerful impact of care rooted in empathy. Read his story.
Meet Dr. Brad Amendt: Researcher, Advocate, and Innovator in Ectodermal Dysplasias
The NFED is pleased to welcome Dr. Brad Amendt to our Scientific Advisory Council! With decades of research experience and a big heart for helping families, he’s bringing fresh ideas, cool regenerative therapies, and a passion for collaboration to push forward care and hope for our ectodermal dysplasias community.
Jamie’s Decade of Sweat for Her Son
What began as one mother’s determination to raise awareness for her son’s rare condition has now grown into a beloved community event. This year marks the final Sweat It Out 5K fundraiser for the NFED, and we’re celebrating Jamie and her family’s dedication to raising awareness for their son, Nicholas, who was born with XLHED.