Image description: A photo of four people with cleidocranial dysplasia wearing matching blue convention t-shirts. From left to right: Dr. Kelly Wosnik, Brayson Deano, Actor Gaten Materazzo, Actor/Comedian Emmett Furrow.
Sometimes, I like to say that I’m one in a million. This is due to the fact that I have cleidocranial dysplasia (CCD). CCD is a skeletal disorder – specifically, a mutation of the RUNX2 gene – that affects one’s collar bones, skull, and teeth as well as skeletal development. The condition generally affects one in a million people. For example, I was born with no collarbones, so I can touch my shoulders together!
Some of you might know it from the TV show Stranger Things, where the character of Dustin is bullied for having CCD and missing teeth in the first episode. The actor of this character, Gaten Materazzo, has the condition in real life.
Recently, Gaten Materazzo teamed up with the founder of CCD Smiles, Dr. Kelly Wosnik (who also has CCD), to create the first ever conference for CCD – the CCD Smiles Conference. This was a three-day conference held in Salt Lake City, Utah from the 13-15 of July. One of the first events of its kind, it brought together people with CCD, their families, and expert clinicians to talk about the condition, discuss medical advancements, and create a community of individuals who have experienced CCD. The convention brought together over 125 people with CCD between the ages of 1 and 86, traveling from 29 states and 5 countries.
Some of the featured speakers included Dr. Frank Artinian II, MD, Dr. Jason Roos, DO,Dr. Heather M. Hendricks, DDS, Susan Starling Hughes, MS, CGC, and CCD Smiles founder Dr. Kelly Wosnik. The Children’s Craniofacial Association hosted a retreat, and the charity received private donations of up to $400, which will go to help those with CCD fund their medical treatments. The conference, food, and entertainment were free to those with CCD.
Image description: The logo for the convention, which reads “2018 Salt Lake CCD Smiles Convention” in blue and white lettering. The logo has a smiley face between “CCD” and “Smiles.” Below, the logo reads “It’s a CCD Thing” in small blue letters.
I have to say, as someone with CCD, I had never previously seen another person outside my family with CCD. The first time I really ever experienced seeing someone with CCD was when I first saw Stranger Things – I made my friend rewind the episode twice to make sure I heard Gaten’s character correctly. When he said – in what later turned out to be a hit TV show – that he had CCD, I screamed out loud! So, you can only imagine how excited I was when I saw that this conference was happening. I followed both CCD Smiles and Gaten Materazzo on Instagram, and I was shocked to see these photos of people who looked exactly like me. For all of my life, I had only seen my mother and her sisters as examples of CCD, but suddenly I could see a whole community of people with my condition. It made me feel like a small part of something larger than myself – to finally be able to see other people with my condition was an incredible experience. I was unable to attend the convention this year, but I would love to be able to attend with my mother and her sisters next year and be able to meet the other members of our disability community.
If you want to learn more about cleidocranial dysplasia, follow updates on next year’s convention, or donate, you can go to ccdsmiles.org, or follow them on Instagram and Facebook.
