Wow! Can you believe it is February already? We all know what happens in February – Valentine’s Day, Ground Hog Day, the Super Bowl. But more importantly, it is Ectodermal Dysplasias Awareness Month, #EDAM2016. This month, we are striving to raise the positive awareness of this condition which affects an estimated 2 in 10,000 births….
Smiling About Snot and Spit
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.
Breast Implants
Editor’s note: Lack of breast development is common in certain syndromes of ectodermal dysplasia. We wanted to share a few stories of affected women who experienced lack of breast growth either in one or both breasts. Two of the women interviewed chose to get breast implants, while the other did not. Names and identifying details have…
Two Questions… How will you answer?
By Mario Adamo from Zurich, Switzerland Family Conference Volunteer in Columbus, Ohio Do you remember the movie “The Bucket List”? There were those two individuals, both condemned by cancer, sitting above a pyramid, talking about ancient beliefs. For every soul knocking on paradise’s door, the Gods held two questions: “Did you find joy in your…
Happy Holidays!
It is hard to believe we are just a few weeks away from starting a new year. Whew! The time certainly flies. When I look over 2015, I think of all of the wonderful things that occurred in this year and I am thankful for all of our blessings. You helped us accomplish all of…
"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…
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…
Celebrating 15 Years of Halloween Bash Success
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…