A teenager from Wisconsin captures national award for his courage to share his struggles with ectodermal dysplasias and create change.
First In Our Family
Possible ectodermal dysplasia. Genetic. Life-long battle. These are not the words a parent wants to hear about their sweet little girl. But, Ashley Braden heard them and she cried. Then she reached out to the NFED for help.
This is a Family Affair
Nikko is a lucky little boy whose family has rallied around him with love and support. Grandpa David and uncle Paul headed off to an NFED Family Conference in search of answers. They found those…and so much more. Find out what they learned and how they are giving back.
Be Cool to Oneself
Cyprian Katongo encourages others affected by ectodermal dysplasia to be who they are and not give in to the bullies who may diss them. Whether you live in Africa, the United States or somewhere else, he has a message of hope for you.
Understanding the WNT10A Gene
In recent years, we have learned that one gene is now the cause for three different types of ectodermal dysplasia. Learn more about the gene called WNT10A and how it manifests.
Made With Love
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.
Prevent and Treat Nasal Crusting with Ectodermal Dysplasias
Do you or your child have trouble breathing because of “nasal rocks” or “concretions” (aka big boogers)? Find out what causes them and how you can best prevent and treat them.
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.