This February, we are asking you, our community, to participate in Ectodermal Dysplasias Awareness Month. Our goal is to create awareness, raise money and advocate for health benefits for dental care of ectodermal dysplasias. Our theme this year is “Advocate for Super Smiles.”
Remembering Lee: A Man Among Men
NFED Founder Mary K. Richter remembers Lee Goggin, who passed unexpectedly following a tragic accident, as a man among men. In him, parents in the ectodermal dysplasias community saw a bright future for their own children which they now knew could include a beautiful wife and gorgeous, precious children.
NFED Was A Bridge Between My Two Worlds
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.
Thank You to Our Retiring Board Members
We thank the following four outstanding volunteers for their service to our Board of Directors. What all four of them have in common in how they served the Foundation is their love for our families. We are grateful for their big hearts and the combined thousands of hours they gave to the National Foundation for Ectodermal Dysplasias (NFED).
NFED Family Conference Sponsor and Program Ads
Each year, we hold our Family Conference to provide life-changing experiences for our NFED families. Annually, 300 to 400 people from all over the world and the U.S. get to experience that they are no longer alone, that they feel connected and that they finally get to have the experience of talking to doctors who…
Ectodermal Dysplasia Treatment Videos Now Available
The one thing all our families want is information about ectodermal dysplasia treatment. You want to know what to expect for you or your child. You are seeking treatment options. You are looking for answers. That’s where the National Foundation for Ectodermal Dysplasias comes in. We now have six free videos of educational workshops from our 2017 Family Conference available to watch. You can hear from our experts, see their presentations and learn.
My Life as Nurse, Mom and Advocate
In all her years as a PICU nurse, Amy Leverenz had never heard of ectodermal dysplasia until the day her daughter was diagnosed with the rare condition. She found the National Foundation for Ectodermal Dysplasias, educated her self and is now educating physicians and legislators. She’s on a mission to impact the lives of other families like hers for the better.
Why We Give Our Time To Help The NFED
Learn how this Canadian couple supports their sister who is affected by EEC syndrome and found a whole other family in the process.