I was born with x-linked hypohidrotic ectodermal dysplasia (XLHED) because of a random mutation. The NFED was a bridge between the two worlds I felt I lived in: one where I could pass as someone who looked unaffected and the one where I knew the issues I faced as a person affected by XLHED. Once I got married and started talking about wanting children was when I began volunteering with the National Foundation for Ectodermal Dysplasias (NFED). I will not give up volunteering with the NFED until we find coverage for my son, Liam’s, teeth and the many others affected by missing teeth.
Launching a Major Research Campaign
We stand at an unprecedented time in history. Preliminary findings from research show great promise for eradicating two symptoms of the most common k ind of ectodermal dysplasia. It’s extraordinary! But without funding, this research study and others will not continue. We are launching the “Impact Cures, Now” campaign to raise $300,000 in the next three years for ectodermal dysplasias research.
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…
2016: Our Year in Review
When I look back over 2016, it brings a smile to my face when I see what we, the National Foundation for Ectodermal Dysplasias (NFED) family, have accomplished. We have truly been blessed with a wonderful year. You helped us accomplish many goals. We are truly grateful that each of you are a part of our family.
Collaborating With Friends Globally
By Mary Fete Here it is November with the holidays just around the corner. For you, I am sure that it has been a busy fall. It is always so hectic getting the kids back to school and/or working on the end of the year work commitments. Fall is rapidly ending (although the weather in…
Greetings from the NFED
Happy Spring! Or, at least we hope it arrives soon. What’s going on at the NFED? Needless to say, we are busy, busy, busy! I would like to share with you our progress towards our goals and other activities. Family Conference We are in full gear preparing for a great Family Conference in St. Louis,…
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.
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.