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.

ELSA’s Clock is Ticking

Tick, tick, tick. Find out why it’s critical that we get at least 75 lawmakers to co-sponsor the Ensuring Lasting Smiles Act by July. Learn the truth about why every family with ectodermal dysplasia in the United States must take action today. 

My Wish

My name is Caleb Locke. I’m 9 years old, and my wish is to have a full set of teeth. I have 4 upper teeth all misshaped, 2 of which are centrally located but not fully erupted. My dental team consists of a maxillofacial surgeon, prosthodontist, and an orthodontist.  My x-linked hypohidrotic ectodermal dysplasia has left…

Why We Need The Ensuring Lasting Smiles Act

The Abbott family spent several years trying to figure out why their young son, Aidan, was missing teeth and had recurring high fevers. Finally, they received an answer. Their son was affected by ectodermal dysplasia. Professionals assured them that insurance would cover the lifetime of dental care he would need to restore his teeth. Unfortunately, that wasn’t the case. Denial after denial catapulted the Abbotts on a journey to fight for insurance benefits not only for their son, but all families affected by congenital anomalies. They found an ally in Congress who co-sponsored the Ensuring Lasting Smiles Act.

My $35,000 (So Far) Smile

Cody Snell has paid $35,000 out of pocket – so far – to replace teeth he never had due to ectodermal dysplasia. At 33, he knows that amount will climb since he faces a lifetime of dental care costs. That is, unless the Ensuring Lasting Smiles Act is passed. He is advocating for this legislation to assure that he, his affected daughter and all families with his condition get the insurance coverage they need for their medically necessary care.

ELSA Reintroduced in Congress

ELSA took another leap forward today! The Ensuring Lasting Smiles Act was introduced in the new U.S. Congress with bi-partisan support in both the House and the Senate. 28 organizations are now supporting the bill which will provide insurance coverage for medical and dental care due to congenital anomalies such as ectodermal dysplasia.

Becky Abbott Joins NFED Staff

Meet the newest member of the National Foundation for Ectodermal Dysplasias staff. Becky Abbott will help us serve families affected be ectodermal dysplasias by managing the treatment and research programs. Learn why our mission is personal for this rare disease advocate.