CRITICAL UPDATE: NEWBORN XLHED CLINICAL TRIAL

I want to share with you, our families, donors and friends, the latest developments regarding the Newborn X-Linked Hypohidrotic Ectodermal Dysplasia (XLHED) Clinical Trial being conducted by Edimer Pharmaceuticals. It has now been two years and three months since the first baby boy affected by XLHED received EDI200, a recombinant protein to replace the one…

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…

Be the Change! Build our Community!

By Lea Richardson, Community Engagement Manager The NFED recently joined Pinterest and I have been amazed at the number of inspirational quotes for and about volunteers.  Some are so great in fact, that I thought I’d share some with you. Some quotes are words of wisdom while others can be attributed to the wise people…

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…

Animals for Ava: Paying it forward!

By Angela and Dante Puorro Our daughter was diagnosed with hypohydrotic ectodermal dysplasia at the age of 19 months.  She was born without teeth, sparse hair and underdeveloped sweat glands. I still remember the day vividly. It was six years ago, at 3 o’clock in the afternoon on the Friday before Labor Day.  Ava’s pediatric dentist introduced us…