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!
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.
A Chance to Sweat: A Grandfather’s Legacy, A Baby’s Hope
What if a decision made decades ago could change your baby’s future? That’s exactly what happened in Jack’s family. From grandpa’s sweat-free childhood to baby Jack’s groundbreaking treatment, this story connects generations, science, and heart. You’ll want to read how one family’s bravery is shaping the future of 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.
Counselor Helps Families Better Understand the Genetics of Ectodermal Dysplasias
The NFED is grateful to have Pilar Magoulas volunteer her expertise as a genetic counselor on our Scientific Advisory Board. Read about why she things more counselors are needed, what the best route to get genetic testing is and why she likes working with the NFED.
New Child Psychologist on SAC To Create Resources You Need
The NFED is proud to welcome Dr. Patricia Marik to our Scientific Advisory Council. Learn what drew her to the NFED and how she aspires to help families affected by ectodermal dysplasias with their emotional health.