Volunteers Needed for Ongoing AEC/EEC Research

Volunteers are needed for ongoing research to design novel therapies for the treatment of skin and cornea lesions that occur in individuals with ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome or ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. The National Foundation for Ectodermal Dysplasias has supported this research led by Maranke Koster, Ph.D. at University of Colorado Denver.

Ongoing Research Into Skin Lesions In Patients Affected By AEC and EEC

By Maranke Koster, Ph.D. The long-term goal of our research is to design novel therapies for the treatment of skin and cornea lesions that occur in ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) and ectrodactyly-ectodermal-dysplasia-clefting (EEC) patients. In the past, many of you have donated skin biopsies to support this research. These skin biopsies were used…

Jeronimo, Our Teacher

Jorgelina, a mother in Argentina, was shocked and sad when one of her twin sons was diagnosed with ectodermal dysplasia. As an English teacher, she decided to learn everything she could. But, it was her son, Jeronimo, who became her best teacher and changed her attitude.

What does a smile mean to you?

For Rachel Nicksich, attending the NFED Kays’ Kids Camp was the best experience of her life. It inspired her to become an NFED Smile Maker and give monthly, despite her limited income.

Hard But Right Decision

Karl Nelsen has spent his lifetime fighting for insurance benefits to get teeth. Now, he’s fighting for legislation to end insurance denials. He’s doing this for himself, his daughter, and for person affected by ectodermal dysplasia for generations to come.

Our Volunteers Are Worth Their Weight In Gold!

For National Volunteer Month, the National Foundation for Ectodermal Dysplasias celebrates its volunteers for their 5,000 hours of service. It is mind boggling the tasks they accomplished to help the NFED and those affected by ectodermal dysplasias. Watch our tribute video and learn how you can volunteer to be a Social Media Ambassador, Advocacy State Lead or fundraiser.