Read how a mom and her daughter from Utah worked hard to share their story and talk with lawmakers about the Ensuring Lasting Smiles Act. Their journey shows how being kind, not giving up, and meeting in person can make a big difference for families like theirs and for ELSA. She walks you through step by step what she did to be successful.
Greg Klimovitz Named NFED’s Next Executive Director
Change is a part of every great story and today marks the beginning of an exciting new chapter for the National Foundation for Ectodermal Dysplasias. On behalf of the Board of Directors, we are pleased to share that Greg Klimovitz has been named as the NFED’s next executive director.
Meet Three Babies Affected by Goltz Syndrome
Meet Eliza, Finley and Emmeline and learn about their first year of life. Each are affected by Goltz syndrome but in different ways. Their stories will help parents expecting or who have a newborn with this condition navigate the unknowns of this complex syndrome. Plus, download NFED’s comprehensive new resource: A Guide to the First Year of Life: Goltz Syndrome / Focal Dermal Hypoplasia.
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.
A Smile Shouldn’t Require a Miracle: Why We Need Insurance Reform for Genetic Dental Conditions
This is one person’s journey from growing up in Western Africa with ectodermal dysplasia to finally getting dental implants in the U.S. It’s about the challenges of treatment, the financial and insurance battles, and why we need laws to ensure everyone gets medically necessary dental care.
Reunited for a Cause: Former Teacher and Student Advocate for ELSA
When Nishant joined NFED as a new Advocacy State Lead, he never expected to find his former English teacher, Jonathan, leading alongside him. Now, the two are working together to advocate for the Ensuring Lasting Smiles Act and show how powerful community and connection can be.
What to Expect if Your Newborn is Affected by Goltz Syndrome
If your baby is affected by Goltz syndrome, you’re not alone. Our new guide shares what to expect in the first year, practical tips for care, and stories from families who’ve been there. The NFED is here to support, comfort, and connect you every step of the way.
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.