Why I'm So Grateful for CCD Smiles

My family just wrapped up four days at the CCD Smiles Conference in Salt Lake City, Utah. My son Michael was born with Cleidocranial Dysplasia (CCD) in 2007; it was a spontaneous genetic instance, and he remains the only one in our family to have the condition. In fact, CCD is incredibly rare — about one in a million people have it.?

To say that the conference was life-changing would be an understatement. I had not heard of CCD Smiles before — their first gathering was in 2019, and the second bi-annual meeting was canceled because of Covid — but this year’s event was exactly the joy and light we needed, especially at a time of such social angst and dismay.

Michael had never met anyone with CCD––neither had any of us––and we were suddenly in a room with close to 300 people, 130 of them with CCD. Meeting so many families–-babies to grandparents, and especially teens!!!––was a game changer for our son Michael appreciating and deepening his notions of community. Everyone welcomed our son with literally open arms, and he felt special rather than othered. For four days last week, he felt a real sense of belonging and we were so grateful for what it meant for his outlook and confidence.

And did I mention that he met Gaten Matarazzo from Stranger Things?! Gaten also has CCD, and has teamed up with the wonderful Dr. Kelly Wosnik to launch CCD Smiles so that everyone with the condition can experience a sense of connection.

Before this foundation, often the only information about CCD would come from a possibly outdated and painfully clinical medical journal or article. There is still a need for research and for funding for surgeries and other interventions necessitated by CCD that many can’t afford, but thanks to Kelly and Gaten and his family, we’re getting closer to both — and I owe them both a world of gratitude.