Dr. Angus Clark is investigating a new, noninvasive way to diagnose x-linked hypohidrotic ectodermal dysplasia in utero. His findings could help facilitate the upcoming clinical trial for treatment. We are proud to fund this work.
At 45, Erica Merriweather has spent a lifetime being treating differently, even bullied, because her teeth are different due to ectodermal dysplasia. Now, she’s fighting to get treatment.
With two young sons affected by hyphidrotic ectodermal dysplasia, Anissa Morgan has faced insurance denials, numerous hospitalizations, child care issues and finding doctors to treat them. That’s on top of learning how to care for their varied symptoms. But this determined mother has learned lessons along the way and is teaching her sons that they are well loved. Learn more here.
Jonathan Weil tells the story of how his family grew in strength and knowledge after his daughter, Maddie’s, diagnosis with ecodermal dysplasias. They’ve come a long way from feeling helpless.
Sharing stories with local press is a powerful tool to raise awareness about ectodermal dysplasias and the challenges many face getting the health insurance coverage they need. Christine Gottschalk details how families and individuals can raise awareness for the Ensuing Lasting Smiles Act through the press.
Heather Martin struggled to find answers after her son Isaiah did not fully develop teeth from birth. She was told by multiple dentists that his teeth should be capped, but she did not listen. Follow Heather’s journey as she fianlly finds the answers she was looking for in a diagnosis.
Aidan Abbott tells us about his journey as an advocate for himself and the Ensuring Lasting Smiles Act.
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.