NFED Recruiting TP63 Research Project Subjects

The National Foundation for Ectodermal Dysplasias (NFED) and researchers at East Carolina University (Dr. Maranke Koster & Shirley Parraga) are recruiting research subjects to participate in a new collaborative research project. 

Researcher Spotlight: Shirley Parraga

Meet Shirley Parraga of the Wake Forest School of Medicine, Department of Dermatology and research assistant to Dr. Maranke Koster. Shirley’s journey with the National Foundation for Ectodermal Dysplasias (NFED) exemplifies a deep commitment to advancing research and providing hope for families affected by rare skin diseases. 

All Things Family Conference

On February 15, I had the pleasure of joining some new and returning families on a webinar to answer all of their questions about the NFED Family Conference, which will take place July 14 – 16. If you weren’t able to join us at the webinar, I want to share some of the great questions…

Celebrating 40 Years with Our Family

The 2022 NFED Family Conferece was a great success. Every year, the NFED invites the families it serves to convene at the conference to learn and most importantly, to connect. We laughed, we cried, we danced, and we can’t wait to see you next year!

Growing Up with the NFED: Meet Virginia

Virginia Higgins was just five years old when her mom, Fredia Shimchick, heard about a mom in the area who was looking for other families affected ectodermal dysplasias. Their family would be one of the first 12 families who called NFED their ectodermal dysplasia home. Find out about her love for the NFED family and why she gives back.

Thank You, Jodi, Editing Queen of the NFED

Jodi Edgar Reinhardt has dedicated 25+ years to the ectodermal dysplasias community as a staffer at the National Foundation for Ectodermal Dysplasias.

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.

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…