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…
Additional Information on Newborn XLHED Clinical Trial: XHLED Family in EU Needed for “Trial to Cure” Project
I want to share with you additional information as a follow-up to our announcement on Wednesday, January 6thabout the Newborn X-Linked Hypohidrotic Ectodermal Dysplasias (XLHED) Clinical Trial.
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…
Holiday Greetings to you!
Please click to watch our 2015 video. Wishing you a Happy Hanukkah, Merry Christmas & Happy Kwanzaa. Peace be with you in 2016.
"Cookies for a Cure"
Volunteering is a labor of love. Volunteering together as a family helps kids learn that they can make a positive difference in the lives of others. It is a great way to teach the importance of becoming involved and giving back to our NFED community. It gives children a sense of responsibility, compassion and…
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…