By Sarah Tevis Poteet, D.D.S., P.A. NFED Board of Director member since 2003 & Patient Care Council member I grew up as part of the NFED family as an affected individual that was missing some teeth. I was a part of an implant clinical trial at the National Institutes of Dental and Craniofacial Research as…
What an Inspiration…
Meet Meg. She’s a high school student from Mequon, Wisc. who decided to hold a fundraiser in honor of her sister, Meredith. Meredith has a rare disorder called hypohidrotic ectodermal dysplasia or HED, which results in multiple missing teeth, sparse hair and a reduced ability to sweat. Meg enlisted her friend to help. Since Meg…
It’s All In the Genes
The pattern of inheritance for an ectodermal dysplasia is crucial to understand whether or not there is a risk for relatives of an affected individual to be affected.
BE HEARD. INSPIRE OTHERS. BE YOURSELF.
Wow! Can you believe it is February already? We all know what happens in February – Valentine’s Day, Ground Hog Day, the Super Bowl. But more importantly, it is Ectodermal Dysplasias Awareness Month, #EDAM2016. This month, we are striving to raise the positive awareness of this condition which affects an estimated 2 in 10,000 births….
Smiling About Snot and Spit
Liam is a happy little guy whose smile lights up the room – and your heart. Like most 11-month-olds, he drools constantly and often has a runny nose. Unlike most kiddos his age, that saliva and mucous is a welcome surprise for his parents.
"Cookies for a Cure"
Volunteering is a labor of love. Volunteering together as a family helps kids learn that they can make a positive difference in the lives of others. It is a great way to teach the importance of becoming involved and giving back to our NFED community. It gives children a sense of responsibility, compassion and…
Be the Change! Build our Community!
By Lea Richardson, Community Engagement Manager The NFED recently joined Pinterest and I have been amazed at the number of inspirational quotes for and about volunteers. Some are so great in fact, that I thought I’d share some with you. Some quotes are words of wisdom while others can be attributed to the wise people…
Animals for Ava: Paying it forward!
By Angela and Dante Puorro Our daughter was diagnosed with hypohydrotic ectodermal dysplasia at the age of 19 months. She was born without teeth, sparse hair and underdeveloped sweat glands. I still remember the day vividly. It was six years ago, at 3 o’clock in the afternoon on the Friday before Labor Day. Ava’s pediatric dentist introduced us…