Jill Radley has spent the last few decades as her son’s biggest cheerleader and advocate. But, she recently used her voice to advocate and tell HER story with ectodermal dysplasia. A teacher at heart, she’s sharing her wisdom with students, other parents and women about the attitude to take when life hands you challenges.
2019 Annual Impact Report
Since 1981, our mission has focused on families affected by ectodermal dysplasias. We are proud of the extraordinary accomplishments we have achieved in our nearly four decades. 2019 was no exception. Read to see the impact we made for our NFED family.
I Wanna Ask Santa for Teeth
Seeing a friend’s teeth, 3-year-old Kannon decides he’ll ask Santa for the teeth he hasn’t developed. Dr. Karen McAndrew steps in to make his first denture and his wish come true.
How to Tell Your Advocacy Story
Telling your story is the most powerful way you can advocate for the Ensuring Lasting Smiles Act (ELSA). We know firsthand that many legislators who have co-sponsored ELSA did so because they were moved by a family’s story. Follow our tips to write and perfect your story.
Teen Advocate Wins Award
A teenager from Wisconsin captures national award for his courage to share his struggles with ectodermal dysplasias and create change.
What Happened at the 2019 Family Conference
Chicago proved to be a sweet home for our 38th Annual Family Conference! We welcomed the third largest gathering of families affected by ectodermal dysplasias in history on July 11-13 with 435 people from seven countries attending. It was an extraordinary event filled with new friendships, aha moments, laughter, hugs, and even tears.
Share Your Story with the Press
Sharing stories with local press is a powerful tool to raise awareness about ectodermal dysplasias and the challenges many face getting the health insurance coverage they need. Christine Gottschalk details how families and individuals can raise awareness for the Ensuing Lasting Smiles Act through the press.
Meet Your Legislators Close to Home
Beth Pond has been advocating for ectodermal dysplasias health benefits for 23 years. She shares what you can do in your home state to create change.