Conference – Where You Can Always Come Home to Your NFED Family

This year’s Family Conference is a Homecoming, meaning a place where you can come home to your NFED family. You will find people who will welcome you with open arms. You can rekindle friendships made long ago. You’ll remember the fun had at previous Conferences and make new memories. Home is the soft place you can land when you are frustrated about dental care expenses, saddened by bullies or worried about the future. It’s also the place where you can share your dreams, boast of your successes and simply be exactly who you are.

Home. That’s what we want Family Conference to be for you. That place where you can come every year to get recharged, find the resources you need and connect with your NFED family. This year, we are expecting 400 people to attend the Conference, making it the largest gathering in the world and in history of families affected by ectodermal dysplasias.

I’m fortunate to have attended 22 Family Conferences and always think there’s no way the next one can top the last one. Yet, they always do.The magical moments I have been privileged to witness are too many to recount here. I recall the boys at our 2000 England Conference playing soccer in the beautiful green pasture. Or, little Michael from Ireland opening his mouth to sing at the Talent Show and hearing one of the most beautiful voices I have ever heard. I remember the collective group of crying people in 2009 when we announced that Edimer Pharmaceuticals had formed to bring a treatment for XLHED to clinical trial. Every Conference is filled with so many magical moments, small and large, that can almost be too much for my heart to bear. These are the reasons why at the end of the Conference, I am just emotionally broken up – and open – from all of the love that has been shared and witnessed.

But it’s the friendships that formed at Conferences that I remember the most. In my early days, it was the Schuermann and Richter families. Jon and Charley using a whoopee cushion on the elevator to entertain riders or performing their Bob Dole and the other “ED” commercial paradies which left everyone in stitches. I remember the trio of Sean Vora, Evan Eisenberg and Kyle Spilbeler being unseparable. The next generation brought Eddie Swierczewski, Jacob Page and Quinn Bylsma and the trio of Ariane Albergo, Rachel Dahler and Caitlin James. Then, it was Tyler Huxman, Zemery Dennis and Nolan Wang, who, affected by EEC, loved having their annual photo where they take off their shoes and pose to show their unique hands and feet. Bosom buddies Olivia Daniels and Mariana Prantl danced together each year in the Talent Show wearing matching costumes.

These friendships blossomed because their families brought them to Conference each year. I would guess they probably never sat around in Kids Camp and talked about what it was like to have ectodermal dysplasias. I suspect they had an unspoken bond just by having that shared syndrome. They saw another person who looked like them, and knew they found a friend who “got it” without ever having to say so. From there, they were just kids being kids. It’s been heartwarming to watch these friendships grow over time and continue into adulthood. I’m excited to see many of them coming “home” again to Columbus.

I’m grateful to everyone who comes to Conference, but especially for all of their parents who saw the importance of being there and made it a priority for their child. We can plan fun activities and bring in the best doctors and dentists in the country. But without you, our NFED families, Conference just wouldn’t be “home.”