Christine Gottschalk found it heard to hear that her perfect son had ectodermal dysplasia. Worse was learning insurance wouldn’t pay for his care. It made no sense to her that some day, her son may have to choose between paying for his dental care or paying for a college education. She decided to take action and invites others to advocate with her.
Aubrey’s Story
Aubrey Stratz is your typical four-year-old girl who loves dancing, unicorns and dressing up as a princess. She’s happy and healthy. She adores her big brother, Max. What’s not typical about Miss Aubrey is the rare condition that affects her, hypohidrotic ectodermal dysplasia. What’s even more interesting is that her her dad was diagnosed, too, but has no symptoms.
Advice on Treatment with Dental Implants in Hypohidrotic Ectodermal Dysplasia
Researchers have learned that the bone found in the jaws of individuals affected by hypohidrotic ectodermal dysplasia is extremely hard and can cause complications for dental surgery. Learn what your dentist should know if you are considering dental implants.
Welcoming New Volunteers to our Board and Council
We are happy to announce that Roy Moffitt has joined the NFED Board of Directors and Dr. Beau Meyer, a dental researcher, has joined the Scientific Advisory Council.
In Remembrance of Joseph J. Barone
The National Foundation for Ectodermal Dysplasias (NFED) family recently lost a patriarch. Joseph J. Barone passed away peacefully on February 23, 2018, shortly after a fall. He had reached the age of 97 years, which is quite an accomplishment in itself. But for someone like Joe, it was even more impressive.
Endless Questions and No Experience
Kerri Fasulo had a long list of questions when her young daughter was diagnosed with a rare condition. She had no experiences to help her find her way through what lay ahead. Soon, she found the resource that made her realize she was not alone.
My Life as Nurse, Mom and Advocate
In all her years as a PICU nurse, Amy Leverenz had never heard of ectodermal dysplasia until the day her daughter was diagnosed with the rare condition. She found the National Foundation for Ectodermal Dysplasias, educated her self and is now educating physicians and legislators. She’s on a mission to impact the lives of other families like hers for the better.
Families Educate Medical Professionals
Educating medical professionals about ectodermal dysplasia is an important part of our NFED mission. Families played a critical role by volunteering to share their stories and describe the how the rare condition affects them at a Grand Rounds in Fairfax, Va.