BE HEARD. INSPIRE OTHERS. BE YOURSELF.

Wow! Can you believe it is February already?  We all know what happens in February – Valentine’s Day, Ground Hog Day, the Super Bowl. But more importantly, it is Ectodermal Dysplasias Awareness Month, #EDAM2016.  This month, we are striving to raise the positive awareness of this condition which affects an estimated 2 in 10,000 births….

Two Questions… How will you answer?

By Mario Adamo from Zurich, Switzerland Family Conference Volunteer in  Columbus, Ohio Do you remember the movie “The Bucket List”? There were those two individuals, both condemned by cancer, sitting above a pyramid, talking about ancient beliefs. For every soul knocking on paradise’s door, the Gods held two questions: “Did you find joy in your…

Happy Holidays!

It is hard to believe we are just a few weeks away from starting a new year. Whew! The time certainly flies. When I look over 2015, I think of all of the wonderful things that occurred in this year and I am thankful for all of our blessings.   You helped us accomplish all of…

Food Allergies and Ectodermal Dysplasia

By Dr. Kay Motil Definition Food allergy, or hypersensitivity, refers to an abnormal immunologic reaction to food. Etiology Allergic reactions to food are caused by IgE activation against specific food proteins or non-IgE activation of other chemical processes involving eosinophil or T-lymphocyte blood cells. Clinical Features IgE reactions are rapid in onset, beginning within minutes…

Career Reflections – Terri Andrews

An interview with Terri Andrews, who is affected by ectrodactyly-ectodermal dysplasia-cleft lip/palate (EEC) syndrome and who had a 20-year career as a registered nurse. When you were growing up did you know you wanted to be a nurse? I always knew I wanted to be in the medical field but I wasn’t sure exactly what role…

NFED Families on Capitol Hill

By Marc Steingesser NFED Liaison On Tuesday, September 29th, I represented the NFED on Capitol Hill along with Jeanne Wang and her son, Nollan, and Kristin Matus-Kelso and her daughter, Ally. We joined other rare skin disorder advocates and members from the American Academy of Dermatology (AAD) to share our concerns and issues with members…