ELSA Picks Up Speed After Fantastic Virtual Hill Day

It’s extraordinary what our advocates and staff have accomplished in just two months since the Ensuring Lasting Smiles Act (ELSA) (S.754/H.R.1916) was re-introduced in the 117th Congress! Our brave advocates shared their struggles on our Virtual Advocacy Day on Capitol Hill. Find out what’s happened with ELSA since they shared their stories.

Celebrate Our Successes With ELSA

As we enter 2021, you may be wondering what the status of the Ensuring Lasting Smiles Act is. Find out what progress we made and how you can sign up for our Virtual Advocacy Day in April.

This is My Normal

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.