Aidan Abbott tells us about his journey as an advocate for himself and the Ensuring Lasting Smiles Act.
Building a Relationship with Your Legislators
Advocating can be done by anyone and anywhere. We can do this…together!
Hard But Right Decision
Karl Nelsen has spent his lifetime fighting for insurance benefits to get teeth. Now, he’s fighting for legislation to end insurance denials. He’s doing this for himself, his daughter, and for person affected by ectodermal dysplasia for generations to come.
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…
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!
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.
What’s going on at the NFED?
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.