The National Foundation for Ectodermal Dysplasias (NFED) family recently lost a patriarch. Joseph J. Barone passed away peacefully on February 23, 2018, shortly after a fall. He had reached the age of 97 years, which is quite an accomplishment in itself. But for someone like Joe, it was even more impressive.
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.
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.
Families Educate Medical Professionals
Educating medical professionals about ectodermal dysplasia is an important part of our NFED mission. Families played a critical role by volunteering to share their stories and describe the how the rare condition affects them at a Grand Rounds in Fairfax, Va.
What better time to raise money for the NFED?
By Brian Brubaker Overheating hasn’t been something that Kindergartner Emily Rose Brubaker has had to deal with very much so far growing up in Alaska. Normally in Alaska, hyp-O-thermia is much more common that hyp-ER-thermia. But in the middle of the Alaska winter, when the Iditarod sled dog race is about to start, the…
A Legacy of HED: Finding Answers for the Reeder Family
Ectodermal dysplasia runs in Kylie Reeder’s family. After she married, her in-laws learned that the daughter they are adopting may also share the condition.
The Missing Piece of the Puzzle
After nearly two years of unexplained fevers, chronic respiratory illness and feeding issues, Mom, Lindsay James, was tired. Thankfully, her google search led her to the NFED which became a beacon and filled their lives with light.
Evan’s Story – Part III
By Karen Forman (Note: The following story is part three in a series written by Karen Forman, the mom to an adult son, Evan, who is affected by hypohidrotic ectodermal dysplasia. Read part one and two. ) My toddler, Evan, loved his new teeth and was happy to show anyone who wanted to look. I noticed…