When Ryan was a year-and-a-half old, and was medically stable, Ruth and Keith Geismar started planning the very first fundraising event to benefit the NFED. Ruth wanted to give back to this organization that had embraced her family and Ryan. Now, we are close to wrapping up the NFED’s 15th annual Halloween Bash. We would…
Career Reflections – Tyler Brown
An interview with Tyler Brown, who is affected by ectrodactyly-ectodermal dysplasia-cleft lip/palate (EEC) syndrome and who is an aerial lineman. I’m an aerial lineman for Haverfield Aviation based out of Gettysburg PA. I travel all over the country working on high voltage power lines from a helicopter. Aerial lineman work from a platform attached to a helicopter,…
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….
Pay it forward! Share the Light!
By Dee Dee Olsen I have led a most beautiful life. I have been graced by God with loving parents, devoted sisters, brothers-in-law, six incredible nieces and nephews, treasured friends and a husband who embodies strength, hard work and consideration. We brought three little people into this world. They breathed new dimensions of love and…
The Moment My Son Taught Me About Strength
By Seth Ferris I live in Brooklyn, New York. And during any given week, any given day, I come in contact with millions of people, some of whom are not too shy about telling a complete stranger what they think of them. You bump into somebody and get a “Hey! Watch it!” or worse. You…
The Choice is Obvious! Because I Can!
By Kristin Matus Kelso “Do all the good you can. By all the means you can. In all the ways you can. In all the places you can. At all the times you can. To all the people you can. As long as ever you can.” ― John Wesley I’m often asked why…
Sweat It Out: The Duke Family’s Journey
By Jamie Duke I learned about hypohydriotic ectodermal dysplasia over two years ago when my son, Nicholas, was diagnosed with XLHED. I knew he couldn’t sweat, but I didn’t truly know and understand until he asked me why my skin was wet after I came back from a run. That hit me hard. I looked…
Career Reflections – Terri Andrews
An interview with Terri Andrews, who is affected by ectrodactyly-ectodermal dysplasia-cleft lip/palate (EEC) syndrome and who had a 20-year career as a registered nurse. When you were growing up did you know you wanted to be a nurse? I always knew I wanted to be in the medical field but I wasn’t sure exactly what role…