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.
Dear Santa
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.
How to Turn Volunteering into a Presidential Service Award
Helping the NFED as a volunteer can add a Presidential Service Award to your resume or college application. We have numerous ways that you could help as a volunteer. Learn how. We offer several toolkits which make volunteering easy.
Volunteer Spotlight: Nicole and John Cooper
For John and Nicole Cooper, helping out at the National Foundation for Ectodermal Dysplasias is a family affair.
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.
Doing Everything I Can for Ectodermal Dysplasias
By Debbie Fenoglio I was pregnant with my second son, Benjamin, in the late summer of 2011 when it was first suggested that my oldest son, Jackson, had ectodermal dysplasia. Like many before me, I had not heard of ectodermal dysplasia. It was offered by our dentist as Jackson’s teeth were not erupting and he…