The world can be a pretty lonely place if you think that yours is the only family navigating the twists and turns of life with ectodermal dysplasia. But there’s no need to live on an island! There are plenty of ways to start making connections and building a network of love and support, including attending ectodermal dysplasia conferences.
Doing Everything I Can for Ectodermal Dysplasias
By Debbie Fenoglio I was pregnant with my second son, Benjamin, in the late summer of 2011 when it was first suggested that my oldest son, Jackson, had ectodermal dysplasia. Like many before me, I had not heard of ectodermal dysplasia. It was offered by our dentist as Jackson’s teeth were not erupting and he…
Eight Easy Steps to Match Your NFED Donation
Did you know that the National Foundation for Ectodermal Dysplasias (NFED) currently has a small but mighty group of 17 donors that have their employers match their donation? Since 2016, these companies have donated over $3,300 matching gift dollars paid and almost $4,000 matching gift dollars pledged. Almost $10,000 total has been given to the…
Advocacy Day On Capitol Hill: What To Expect
Learn what to expect, where to go, what to say and more if you are attending the 2017 Ectodermal Dysplasias Advocacy Day on Capitol Hill.
A Legacy of HED: Finding Answers for the Reeder Family
Ectodermal dysplasia runs in Kylie Reeder’s family. After she married, her in-laws learned that the daughter they are adopting may also share the condition.
5 Reasons Why We Need You on Capitol Hill
Ectodermal Dysplasias Advocacy Day approaches quickly and we need you, our National Foundation for Ectodermal Dysplasias (NFED) family, to be there. We try time and again to be advocates to all members of the NFED. But only you and your family are the ones who can make a difference in the lives of people affected…
Must See In Washington D.C.
Washington D.C. is not just our country’s capitol. It is filled with delicious places to eat, cultural events and filled with American history. You can find it all in D.C. Here are just a few of the many places you can visit while you are there during the Stand Together Conference. You can also view…
Dad Works to Be Walking Billboard for NFED
Seth Ferris lives in Brooklyn, NY and is an avid volunteer. He not only volunteers for the National Foundation for Ectodermal Dysplasias (NFED) but also for the local soup kitchen, American Red Cross, and the Ambulance Corp. However, his primary focus and passion belongs to the NFED. Seth has been involved with the NFED for…