By Meredith Grimes Our first National Foundation for Ectodermal Dysplasias (NFED) Family Conference was a life-changing week. We were new to the diagnosis and feeling completely overwhelmed. We had a list of questions a mile long. What is hypohidrotic ectodermal dysplasia (HED), what does it mean to be a carrier, what do we need to…
Evan’s Story – Part III
By Karen Forman (Note: The following story is part three in a series written by Karen Forman, the mom to an adult son, Evan, who is affected by hypohidrotic ectodermal dysplasia. Read part one and two. ) My toddler, Evan, loved his new teeth and was happy to show anyone who wanted to look. I noticed…
Families Use Facebook to Raise Needed Funds
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…