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 life?” and “Did your life bring joy to others?”
Engaging myself with the NFED is always a huge honor. Something you can’t describe. You’re there, in order to make a difference. It’s not for standing in the spotlight or earning awards. It’s for helping families dealing with this large group of rare syndromes, as well as educating and raising awareness.
Ectodermal dysplasias are still unknown for many doctors. Exactly like thousands of other genetic syndromes.
NFED is doing a huge job connecting people and families. No one is left alone. Their top event is the yearly Family Conference.
I took the opportunity to give something back to the NFED 2014 in Columbus, Ohio. They welcomed me, a guy who isn’t affected by ectodermal dysplasia or a related condition, like a brother, since 2012. I am proudly helping the Italian p63 EEC International group as their foreign representative and translator. By the way, EEC stands for ectrodactly (split hands/feet)-ectodermal dysplasia-cleft lip/palate syndrome. That’s the only connection I have with the NFED.
I love engaging with rare craniofacial syndromes. Ectodermal dysplasia isn’t falling under this category, but there are ectodermal dysplasia-related syndromes that do affect both the cranium and face.
Lots of people in the NFED made this place a reality. I love them all. Their daily engagement and dedication is always something to look forward to and to look up to. Amazing!
So, when my soul is knocking at paradise’s door one day, and the Gods ask me those two questions, I want to answer both with a clear “yes.”
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