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…
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!
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.
Find out what the National Foundation for Ectodermal Dysplasias recently published in research, will be announcing about the Ensuring Lasting Smiles Act and is planning for 2019.
At the National Foundation for Ectodermal Dysplasias (NFED), one thing is for sure, we love our families! When we support our families, we certainly appreciate when they support us back. One of the most loyal and sustaining ways to support the NFED is through our monthly giving program, the Smile Makers. One of our amazing…
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.
Finally getting a diagnosis of hypohidrotic ectodermal dysplasia for their 13-month-old daughter was a relief for Sam and Neil Gansebom. But, they still had all of these emotions. Where would they turn? What should they do? Read about how they are coping and what they are doing.
The Ensuring Lasting Smiles Act (ELSA) was introduced as a bill in the U.S Senate and House today. This legislation will significantly impact families affected by ectodermal dysplasias and other congenital anomalies. If passed, it will provide health benefits for their complex dental care.