This November, the click of mahjong tiles, the smell of brunch, and the bustle of gameplay will fill an eatery in Aspinwall, Pennsylvania. It’s all in support of a cause that, until recently, one family had never heard of: ectodermal dysplasias.
Where It Started: A Trip to Washington
Christian, a dental student at the University of Pittsburgh, ended up on Capitol Hill one day early this spring. An email invite from the American Association for Dental, Oral and Craniofacial Research (AADOCR) landed in his inbox. He signed up for a day of advocacy without hesitation. Public policy had interested him for years, ever since a favorite teacher first showed him how complex and important it could be.
That’s where our paths crossed. We ran into Christian on Capitol Hill, where NFED Executive Director Greg Klimovitz shared stories of families affected by ectodermal dysplasias.
“I didn’t think I’d have the chance to do anything meaningful on Capitol Hill until I was much older,” Christian said. “So I was deeply humbled and grateful to be there in any capacity.”
It was during that conversation with Greg that something clicked for him. Christian, already immersed in all things dentistry, realized he’d never encountered this rare condition in his studies.
“Advocacy at the NFED is not only about mobilizing for legislative action, although that is a key part of it,” Greg shared after learning about Christian’s idea for a fundraiser.
“Advocacy is giving voice to the stories, the people, the real struggles in any spaces where people are willing to bridge understanding of ectodermal dysplasias with opportunities to improve and enrich the lives of those impacted. I was thrilled to meet Christian, who is clearly interested in being such a bridge builder. His empathy for those he met and sat with in legislative meetings is why I am so hopeful for the next generation of dentistry professionals. I am moved by his ongoing advocacy for our community that goes beyond a one-time event and our initial conversations on the Hill.”
A Family Searches for a Cause
Back home, Christian’s mom, Amanda, had an idea. As a mahjong enthusiast, she’d been going to mahjong events all around Pittsburgh and thought, why not host one for a good cause?
The family’s first instinct was the Special Olympics, an organization Christian has volunteered with for years. But the more they considered it, the more they found themselves drawn towards a cause with less visibility. Christian remembered the NFED families he’d heard about on the Hill. He couldn’t forget how insurance and dental coverage so often fail to cover crucial care, leaving families to pay out of pocket just so they or their children can eat and speak normally.
“Anyone who has heard some of the stories of people who have experienced the negative effects of ectodermal dysplasia knows how heart-wrenching they are, and you usually walk away asking the question: how have I never heard of this before? That’s exactly why we wanted to work with the NFED. It’s a beautiful cause, but being a rare disease, people don’t know about it.” – Christian
It quickly became the family project. Christian’s sister, Maya, a dental hygienist, found herself surprised that the condition had never come up in her own training, and got involved in the effort too.
I caught up with Amanda by phone on her lunch break. She’s a school teacher, squeezing our call in between bells while also fitting event planning into a busy fall schedule. It’s clear that education is important to her, even outside her classroom.
“I think my biggest goal at the end of the event would be to spread the word about what ectodermal dysplasias is and the need for funding.”
We spent a few minutes discussing the persistent trouble families have navigating the insurance process and getting coverage for their much-needed care.
“It’s just eye-opening. The fact that they [affected individuals] bounce from medical to dental, and that lack of approval with insurance. That’s what stands out most.”
Stacking Up for the NFED
Mark your calendars. On Nov. 14th at the Cornerstone in Aspinwall, Pennsylvania, hours of mahjong gameplay for a cause will kick off at 9 a.m. Owner Erin Connolly, a mahjong player and instructor herself, is donating her restaurant’s venue space for the morning, and guests can expect brunch, mimosas, and three hours of gameplay.
Every seat comes with more than just a good hand of tiles. Guests will find NFED information at their tables and in their goody bags, and both Christian and Maya plan to make their way around the room, ready to chat about ectodermal dysplasias with anyone who’s curious.
“I think when we tie these important causes into enjoyable events like mahjong, people start to associate the positivity between the two. I’m hoping that positive association will stick with everyone who comes, and they continue to think about important causes more regularly.”
— Christian
Every Tile and Every Story Count
As a small foundation supporting rare conditions, the NFED doesn’t always have the reach of larger causes. And, ectodermal dysplasias don’t always get the attention that other conditions do, even in dental provider education.
But that also means that every dollar goes further. Every conversation can open a door to understanding. And, every story shared can trickle down into awareness, education, support, or even a mahjong tournament.
Neither Christian nor Amanda had any personal connection to ectodermal dysplasias. No family diagnosis, no history with the NFED community-just a chance meeting on Capitol Hill and stories that stuck with them. Now their story is becoming part of ours – one more tile in a winning hand.
If you’re in the Pittsburgh area this November, consider this your invitation to a brunch that gives back in more ways than one.
Want to support NFEDxMahjong or learn more about hosting your own community fundraiser? Contact me.