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.
Volunteer Finds Way to Connect Patients with Caring Dentists
Meet Dr. Beau Meyer, a passionate pediatric dentist making a real difference for kids with ectodermal dysplasias! His dedication, creativity, and heart for his patients shine through in everything he does. Want to hear how he’s changing lives—and maybe even get inspired yourself? Don’t miss this volunteer spotlight!
New Board and Council Members Bring Expertise and Insights to the NFED
The National Foundation for Ectodermal Dysplasias (NFED) is thrilled to announce the addition of new leadership experts. Joining our Board of Directors, Patient Care Council, and Scientific Advisory Council, these four exceptional leaders will bring knowledge, experience and insights to advance the foundation’s mission of supporting and serving individuals and families affected by ectodermal dysplasias.
Dermatologist Volunteers and Creates New Resources for Ectodermal Dysplasias
Long time National Foundation for Ectodermal Dysplasias (NFED) volunteer and pediatric dermatologist Dr. Elaine Siegfried said that mentoring the next generation of doctors about the ectodermal dysplasias is one of her passions. This month, we feature one of those new doctors in our volunteer spotlight. Dr. Rylee Moody graduated from medical school at Saint Louis…
The Impact of Volunteers on the NFED
It’s Volunteer Appreciation Week and we have a lot of people to celebrate and thank. Our committed volunteers span the globe and lend their time, skills, and passion to make a real difference.
Financial Consultant Gives Heart and Time to Help Her Son’s Tribe
Marianne Vermeer’s “guardian angel” of a dentist encouraged her to get involved with the NFED. She jumped all in becoming an active volunteer and member of the Board of Directors. Read about the powerful moment she had as a volunteer and what she’s learned about children with ectodermal dysplasia.