ELSA Advocates Raise Their Voices in DC at NFED Hill Day

The air felt electric on September 19th as 172 advocates marched to the steps of the United States Capitol Building in Washington D.C.., ready to advocate for the Ensuring Lasting Smiles Act (ELSA). Read about this amazing day and what’s happening next for this important legislation.

How to Turn an Idea into Money for the Mission

Let’s work together during Ectodermal Dysplasias Awareness Month to fundraise! We can help you brainstorm and plan an activity or an event. You can also download tool kits we have to make it easy. Are you ready to plan some fun for a good cause?

Why I Volunteer

Find out what happened to Jack Kriz when he was 50 years old that finally made him feel whole, and why he always says yes when the NFED asaks for his help.

What I Want for My Grandchildren With Ectodermal Dysplasias

Sandi Hirst is a grandma who is passionately advocating for the three generations in her family who are affected by x-linked hypohidrotic ectodermal dysplasia. She doesn’t want her daughters to have to pay six figures for her grandsons’ dental care. Read this month’s Volunteer Spotlight to find out what she’s doing to help advance the Ensuring Lasting Smiles Act and why.