April is Volunteer Appreciation Month. A time to recognize, thank and celebrate volunteers. We respect and love our Volunteers yearlong but this is your special month to cheer you on for all you have done and do for those affected by ectodermal dysplasias and the NFED. We celebrate your service. It has become even clearer…
Beth Tascione and Jonathan Weil didn’t think about it too much when their one-year-old daughter’s tooth came in pointy shape. But when the second one did, too, they got curious. Their online investigation led them on a journey to learn about ectodermal dysplasia, advocate for their daughter and raise funds for the organization that helped them every step of the way, the National Foundation for Ectodermal Dysplasias.
Kerri Fasulo had a long list of questions when her young daughter was diagnosed with a rare condition. She had no experiences to help her find her way through what lay ahead. Soon, she found the resource that made her realize she was not alone.
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 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).
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.
Learn how this Canadian couple supports their sister who is affected by EEC syndrome and found a whole other family in the process.
We know that you have been good this year so we wrote our own letter to Santa on behalf of you and all families affected by ectodermal dysplasias.