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…

Clouston Syndrome: Perfectly Different

Addison Kemper spent her life being told she’s perfect, but knowing she was different. She had little hair and problems with her nails. Kids bullied her. Life was hard at times. She knew she must have a condition of some kind but found no answers. Her baby’s arrival led her to a diagnosis for both: Clouston syndrome. Those two words opened the door a new world.

Family-driven Grassroots Action is the Answer

Jen Steele’s life was forever changed in 2012, when her daughter, Alli, was diagnosed with ectodermal dysplasia. Her family spent the next few years commuting 240 miles round trip to the University of Iowa to meet with geneticists, doctors and dentists. She discovered the National Foundation for Ectodermal Dysplasias (NFED) online and called for help and support. The Iowa mom quickly learned that Alli’s dental needs would exceed their financial abilities. She was not one to ask for help or be complacent and just accept the fact that their medical insurance would not cover Alli’s medical needs. With no political experience, the Steele family joined other NFED families in taking action to advocate for the Ensuring Lasting Smiles Act.

Families Raise Awareness Around the World

Our community worldwide united online in February for Ectodermal Dysplasias Awareness Month! Our goal this year was to raise awareness about the symptoms, its impact on teeth and need for the Ensuring Lasting Smiles Act to get coverage for treatment. And you helped us do that!

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…