To Know Katherine is To Know Joy

Jodi Watts’ days as a stay-at-home mom with a baby with Goltz syndrome were filled with appointments to attend to Katherine’s many needs. The fiesty little toddler faces many challenges but continues to thrive. Find out what her parents have learned, the life-changing conference they attended, and the dreams they have for Katherine.

Little Girl with Goltz Syndrome is Born A Fighter

Katherine Watts is a two and half year old little girl in Virginia who’s going places. Figuratively and literally. This little lady is in constant motion and is also quite the fighter. Since she was in the womb, she’s had a team of doctors who care for her many complex symptoms caused by Goltz syndrome. Learn about her challenges and what her parents had to learn quickly.

A World Where Families Are Fierce and Strong

Gavin Cochran’s KID syndrome diagnosis leads a Montana family on an amazing journey where the typical milestones of childhood are huge victories. Read how the spirited six-year-old handles deafness, missing teeth, lack of vision and other medical challenges and where his parents found the support they needed.

Underrated Basketball Star with HED Excels on the Court

Jacobi Sebock’s killing it on the basketball court and getting attention from the likes of NBA player, Steph Curry. He excelled in both basketball and track his senior year, not letting his inability to sweat hold him back. Watch this All-State athlete dunk and find out the big dreams he has.

AEC Syndrome Doesn’t Stop Us from Giving Back

The Shimchick family has faced many challenges caused by ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome. Denyse and her three children are all affected. Together, they have been through 217+ surgeries! Despite their medical needs, the family has made volunteering a key part of their lives. Find out how they strive to help others.

Pushing the Limit: Running a Marathon Without Breaking a Sweat

Growing up, Adam Viccaro wanted to be like his dad, who was a marathoner and Ironman. Determined, Adam found ways to adapt to his inability to sweat due to hypohidrotic ectodermal dysplasia (HED.) He shares what he learned in training his body and mind to do the unthinkable: running a marathon when you can’t sweat. His incredible story will inspire you to believe you can do anything!

The NFED Continues to Expand in Its First Decade

Our conversation with NFED founder Mary Kaye Richter and her son, Charley Richter, continues as we look back at the NFED in the 1980s. They share what it took for the Foundation to grow and thrive and the people that made it happen. Read how Richter’s can-do spirit drove the NFED’s success and inspired parents to expect great things for their children.

How Our NFED Family Came To Be

What was it like to be diagnosed with ectodermal dysplasia in the early 1980s? NFED founder, Mary Kaye Richter, looks back at the Foundation’s humble beginnings, its first decade of accomplishments and the extraordinary people and circumstances that fueled its success.