For National Volunteer Month, the National Foundation for Ectodermal Dysplasias celebrates its volunteers for their 5,000 hours of service. It is mind boggling the tasks they accomplished to help the NFED and those affected by ectodermal dysplasias. Watch our tribute video and learn how you can volunteer to be a Social Media Ambassador, Advocacy State Lead or fundraiser.
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.
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…