What A Difference I Can Make

Your life can take a different path, one you never expected in a matter of a moment. Debbie’s changed when her first grandson was born. Little did she know on that day she would become a volunteer for the NFED.

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.

Ectodermal Dysplasias Classification

By J. Timothy Wright, DDS, MS How does one best diagnose and understand the clinical manifestations of an individual or family with an ectodermal dysplasia?  Furthermore, what exactly is an ectodermal dysplasia? These questions have challenged affected individuals, clinicians and scientists for over 40 years. A decade ago, the National Foundation for Ectodermal Dysplasias (NFED) embarked…

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.

The Road Less Traveled

Priscilla and Ryan’s newborn baby struggled to feed in the neonatal intensive care unit. He just wouldn’t take a bottle and the family was frantic for answers as to why. The solution and ultimately an ectodermal dysplasia diagnosis came from their nurse, whose expertise was learned first-hand.

Dollars for Doers

Did you know that you could volunteer and the National Foundation for Ectodermal Dysplasias could get paid for your hours? Many companies across the U.S. are starting volunteer grant programs. Learn what you need to do.

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.