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…
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…
Celebrating 15 Years of Halloween Bash Success
When Ryan was a year-and-a-half old, and was medically stable, Ruth and Keith Geismar started planning the very first fundraising event to benefit the NFED. Ruth wanted to give back to this organization that had embraced her family and Ryan. Now, we are close to wrapping up the NFED’s 15th annual Halloween Bash. We would…
Career Reflections – Tyler Brown
An interview with Tyler Brown, who is affected by ectrodactyly-ectodermal dysplasia-cleft lip/palate (EEC) syndrome and who is an aerial lineman. I’m an aerial lineman for Haverfield Aviation based out of Gettysburg PA. I travel all over the country working on high voltage power lines from a helicopter. Aerial lineman work from a platform attached to a helicopter,…