Rise Up and Volunteer

February is Ectodermal Dysplasias Awareness Month. It’s a perfect opportunity to take action for the NFED family. Check out these ideas for easy ways to fundraise and make a difference.

A Grandmother’s Take on Ectodermal Dysplasia

As a baby, Weston Walker experienced all of the same issues his mom, Randi, had when she was born. He struggled to breathe. He choked and spit up a lot. He didn’t cut teeth. For Debbie Reed, Randi’s mom and Weston’s grandma, it was heartbreaking to live it all over again. They visited doctor after doctor, asking if this was normal. Read how a diagnosis changed how this grandma looks at life.

Get Baking With Cookies for a Cure

Love cookies? (Who doesn’t?) Want to support the National Foundation for Ectodermal Dysplasias (NFED) and spread awareness for ectodermal dysplasias? We have the perfect fundraising opportunity for you — cookies for a cure.

Why Oliver Is Smiling Even Bigger

Oliver wakes up every morning with the biggest smile in the world even though he has only six teeth. He’s affected by hypohidrotic ectodermal dysplasia. Last Tuesday, Oliver received his dentures and he is thrilled! Now his usual big smile is even bigger. In honor of Oliver, his parents, Matt and Vanessa Nehrkorn, recently held…

A Shot of Courage and Lavender Cooling Mist

By Liz Timmerman Just over a year ago, my youngest daughter, Violet, was diagnosed with hypohidrotic ectodermal dysplasia at the age of one year old. The first year of her life was filled with many challenges and I was seriously starting to doubt my abilities as a mother because my baby was always so unhappy, couldn’t…

We Volunteer So Others Don’t Feel Lost

by James Kluzek We were asked why we volunteer for the NFED. It all started November 16, 2000 when our daughter, Christina, was born with a genetic disorder called Goltz syndrome. This day changed our lives forever. We had never heard of this syndrome and more importantly most of our doctors knew nothing about it either….