Skin erosion can be life-threatening for people affected by ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome. Two research labs are studying to understand the molecular defects that lead to skin erosions so they can ultimately develop therapies.
Dr. Schneider and his team of investigators have published their groundbreaking research results in a “Prenatal Correction of X-Linked Hypohidrotic Ectodermal Dysplasia.” We are thrilled to share with you key highlights from their research, what it means for our families affected by XLHED, and the next steps.
As a nonprofit organization serving the ectodermal dysplasias community committed to transparency, we are happy to share with you our 2017 Annual IMPACT Report. Here we report on just a few of the many activities and accomplishments from 2017.
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.
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.
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…
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.
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…