This year was the first ever CCD Smiles conference in Salt Lake City, Utah. I love it when these events are close to home! I had the opportunity to take quick 2 minute portraits of some of the attendees who are diagnosed with Cleidocranial Dysplasia. Part of the AOA photography project is to help raise awareness for these rare diseases and individuals. Many people do not know about CCD and we are happy to do a small part in raising awareness!
Cleidocranial dysplasia (CCD) is a skeletal disorder characterized by open fontanelles (soft spot), small or absent clavicles (collarbones), and multiple dental abnormalities. It is a genetic birth defect caused by mutations to the RUNX2 gene. It occurs one in every one million births. It can be passed from an affected parent or can be a random mutation. Manifestations may vary among individuals in the same family.
Many attendees had never met anyone else with their diagnosis and it was an emotional event for all. I absolutely loved taking these portraits and even though they were fast, and in a hotel conference room, we got some amazing images that I hope to share a few with you soon!
These individuals are one in a million. If you or someone you know have symptoms or a diagnosis of
Cleidocranial Dysplasia you should find CCD Smiles on Facebook and check out their website at ccdsmiles.org
Marc: Age 6
Diagnosis: WPW (Wolff-Parkinson-White Syndrome) Asymptomatic Cause
IgA immune deficiency
POTS (Postural Orthostatic Tachycardia Syndrome)
MCAS (Mast Cell Activation Syndrome)
A Herniated disc and degenerative disc disease
and still testing….