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.
Our Gift for You: A Major Advocacy Announcement
Senator Tammy Baldwin has been a big supporter of ectodermal dysplasias this past year. She introduced S.Res.226 in July and welcomed us to Capitol Hill. Now, she’s getting ready to take the next step toward helping us get a law mandating health benefits the dental care for ectodermal dysplasias.
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.
This Is Not Some Hollywood Smile Issue
A Canadian mother trusted her instincts and had her son genetically tested when he didn’t develop all of his teeth. Their journey led to a diagnosis of odontoonychodermal dysplasia, a rare type of ectodermal dysplasia. It also explained symptoms for other family members. Read what Jamie Critchell is determined she must do now.
It Takes A Village
By Karina Luna I am the proud parent of a child with hypohidrotic ectodermal dysplasia. When my son, Liam, 4, was first diagnosed, I was completely blindsided. His father, Leonardo, and I had never heard of this rare condition, nor did we know how unique his upbringing would be because of it. Upon finding the…
Can you believe it’s already the end of the year?
The National Foundation for Ectodermal Dysplasias (NFED) has had a breakthrough year from launching Advocacy Day to funding research projects that are on the brink of life-changing treatments and cures. We cannot do this without our donors and volunteers. Thanks to all of you who give your hard-earned money and time to the NFED! The…
Why One Dentist Loves to Help NFED Families
Dr. Jon Korostoff is an unsung hero of the National Foundation for Ectodermal Dysplasias (NFED) family. His humble approach to dental care can be misleading because he is truly changing the lives of his ectodermal dysplasias patients.