My Motto: Never Ever Give Up

Meet Nicole, a determined 14-year-old girl who is using her voice on Capitol Hill to advocate for herself and others. She would like you to join her. Learn why she’s advocating and what you can do to help.

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.

What I Would Tell My Middle School Self

For her entire life, dentists told Finlay she would have to wait till adulthood to get treatment for her missing teeth. They didn’t seem to understand how having missing and misshapen teeth was affecting her. Find out what her frustrated parents did to get her treatment and how this experience has impacted the teenager’s outlook.

Committed Advocates Inspire Action in the Senate

With about six weeks left in the 117th session of Congress, the mood on Capitol Hill feels hopeful and positive for getting the Ensuring Lasting Smiles Act (ELSA) passed! Team ELSA participated in our third virtual Advocacy Day this year. Find out where things stand on the bill and how you can 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.

How Powerful Storytelling Could Make ELSA a Law

We have the most amazing Ensuring Lasting Smiles Act (ELSA) advocates! Our contacts on Capitol Hill tell us that the reason the bill has garnered incredible support in a short amount of time is because of our grassroots efforts. It’s because families affected by congenital anomalies bravely share their personal stories with Congress. That’s exactly what happened again on Tuesday, June 21 when 314 advocates met with 49 U.S. Senate offices for the National Foundation for Ectodermal Dysplasias (NFED) Virtual Advocacy Day with the Senate.

Advocacy is Something We Are Meant to Do Together

Morgan Rigsby is the kind of mom who wants to model the behavior she wants her kids to have. That’s why she’s become a passionate advocate for the Ensuring Lasting Smiles Act. In our Volunteer Spotlight, Morgan talks about what volunteering has taught her, how she celebrates the small victories with her son, and why you need to be open to sharing your story.

Our NFED volunteers light the way!

Whenever the NFED has a need, our volunteers step forward and help. We want to let you know that your dedication and inspiration is essential to the work that we do—we simply cannot do it without you. THANK YOU!