Liam is a happy little guy whose smile lights up the room – and your heart. Like most 11-month-olds, he drools constantly and often has a runny nose. Unlike most kiddos his age, that saliva and mucous is a welcome surprise for his parents.
"Cookies for a Cure"
Volunteering is a labor of love. Volunteering together as a family helps kids learn that they can make a positive difference in the lives of others. It is a great way to teach the importance of becoming involved and giving back to our NFED community. It gives children a sense of responsibility, compassion and…
Be the Change! Build our Community!
By Lea Richardson, Community Engagement Manager The NFED recently joined Pinterest and I have been amazed at the number of inspirational quotes for and about volunteers. Some are so great in fact, that I thought I’d share some with you. Some quotes are words of wisdom while others can be attributed to the wise people…
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…
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…