We Celebrate Service.

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…

It Felt So Powerful

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.

Endless Questions and No Experience

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.

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.

A Cause Worth Fighting For!

Jeanne Wang wanted to give back to the organization that helped her when her son was diagnosed with a rare syndrome called EEC. She quickly found that education and raising awareness empowered her!

Volunteer Spotlight: WOMEN4GIVEN

We are thrilled to have started a relationship with the Women4Given in O’Fallon/Fairview Heights, IL. These ladies were and will continue to be a tremendous supporter of the NFED.