This year, we asked our families to help us raise money during Ectodermal Dysplasias Awareness Month. All they had to do was set up a Facebook fundraiser, which took just a few minutes. Nine families answered our call and generated about $8,000 for the National Foundation for Ectodermal Dysplasias! Thank you to the Andrews, Claire,…
Finding Power in Telling Your Classmates About Ectodermal Dysplasias
It’s been a tough year in 5th grade for 10-year-old Josh. He’s been struggling internally about who he is and the condition he has, according to his mom, Chelsea Horan. Josh is affected by hypohidrotic ectodermal dysplasia, a rare genetic disorder. “Josh has been struggling a bit this year with talking to his peers who…
Family Conference Sponsors Needed
Each year, we hold our Family Conference that provides life-changing experiences for our families at the National Foundation for Ectodermal Dysplasias (NFED). Annually, 300 to 400 people from all over the world and the U.S. get to experience that they are no longer alone. They get to connect with other families and talk to doctors…
How Hypohidrotic Ectodermal Dysplasia Affects the Voice
Recently, we had a family ask if we had any information about how ectodermal dysplasia affects the voice. The National Foundation for Ectodermal Dysplasias (NFED) did support a research project in the late 1990s that Kelly Mabry, Ph.D., Associate Professor at Southern Connecticut State University did. While the study is older, the information is still…
You’ll Never Be Alone Again
By Maureen Having ectodermal dysplasia can be hard. Especially growing up. I had never met another person with ectodermal dysplasias until I went to my first National Foundation of Ectodermal Dysplasias (NFED) Family Conference in 2014 at the age of 46. I had always felt alone. I don’t know which type of ectodermal dysplasia I…
Four New Board Members Added
We welcome four new members to the National Foundation for Ectodermal Dysplasias (NFED) Board of Directors: Karl Nelsen, Keith Throm, Marianne Vermeer and Dr. Tim Wright. Volunteering for a Board takes a huge time commitment. Their input is valuable as they steer the NFED and keep us moving forward. Karl Nelsen has been a member of…
10 Tips for Family Conference First-Timers
Are you heading to Falls Church, Virginia, this summer to attend the National Foundation for Ectodermal Dysplasias Family Conference? Our veteran attendees have some great tips for you. Some of the best knowledge you gain is from the interaction with other families. Ask,ask,ask…anything! Write down all your questions so you don’t forget. Everyone is there…
My Smile – Always Has Been, Always Will Be!
Background Born to a mother with ectodermal dysplasia, I grew up knowing how my condition affected my teeth, and that someday I might need dental implants. I had eight natural teeth, four incisors and four molars – two of each on top and bottom – and wore an upper and lower removable denture starting in…