We are your NFED team! We’re a mighty crew of six women. We couldn’t be more different. And that’s a good thing! But we are the same in one way. The most important way. The six of us are passionate about families affected by ectodermal dysplasia and doing what we can to help you. Since we typically get to learn about you, we thought it was our time to share. This is us.
Tales of the Fire Breathing Dragon
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.
Building Your Legacy
I recently read a meme that said you only have 18 summers with your kids, enjoy every moment. This moved me and got me thinking about how time is precious and should be cherished with our loved ones while we are here on this Earth. I reflected on my life and started to think about what kind of impact I want to make on my family and others when I’m not here. What do I want my legacy to be?
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.
Jacob Moss Photo Project Call To Action
Jacob Moss is looking for individuals with ectodermal dysplasia, ages 15-50, to participate in his photo project for his graduate thesis. His goal is to capture the diverse mix of people who happen to be affected by the various types of ectodermal dysplasia.
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.
You Have the Chance to Change History
Every day, the NFED staff receives calls, emails and social media messages about the terrible struggles families have getting coverage for their dental care. Insurance coverage issues have plagued our community for decades. Raise your voice with us to take action. We need just one more Representative to cosponsor and introduce a Bill. We have four different opportunities for you to advocate.