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….

Things to do in the hotel during Conference

Curious about what you can do during your spare time at the Family Conference.  They offer: Business center. Need to work for a few hours while at the conference.  Here is what the business center has to offer: Audio/Visual Equipment Rental Complimentary Printing Service Fax Meeting Rooms Photo Copying Service ($0.10) Printer Indoor Pool.Too hot…

Animals for Ava: Paying it forward!

By Angela and Dante Puorro Our daughter was diagnosed with hypohydrotic ectodermal dysplasia at the age of 19 months.  She was born without teeth, sparse hair and underdeveloped sweat glands. I still remember the day vividly. It was six years ago, at 3 o’clock in the afternoon on the Friday before Labor Day.  Ava’s pediatric dentist introduced us…

When Life throws you a Lemon, make Lemonade!

By Henry and Catherine Bourgin Twelve-year old Henry is affected by XLHED, as is his mom, Catherine. They live in McLean, VA. Henry would like to share his thoughts on having a lemonade stand with baked goods during summer break: “When I’m at the lemonade stand, we like to talk to each other and when other people come we’ll have conversations….

Geismar Family Gives Back with Annual Halloween Bash

By Alice Geismar Seventeen years ago this November, my husband, Bruce and I were awaiting the birth of our second grandchild. Our first grandson, Jack was almost two and we were enlisted to watch him while Ruth and Keith went to the hospital. It was immediately apparent that Ryan had serious problems. He looked like…