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.

Hard But Right Decision

Karl Nelsen has spent his lifetime fighting for insurance benefits to get teeth. Now, he’s fighting for legislation to end insurance denials. He’s doing this for himself, his daughter, and for person affected by ectodermal dysplasia for generations to come.