Julie Claeys took her son to advocate in Washington D.C. for the Ensuring Lasting Smiles act. She’s hoping you will join her this year and bring your kids, too.
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.
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.
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.
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.
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!
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.
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.