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
This year the Children’s Craniofacial Association (CCA) held it’s annual retreat and educational symposium in Salt Lake City, Utah. I had the opportunity to go and photograph the last night of their retreat which involved dinner and dancing…and dancing…and dancing! This was the funnest group I have ever been with and if this is a organization and/or retreat that would benefit you, a family member or friends I highly recommend that you get involved-follow their information on Facebook, website https://ccakids.org/ newsletter, and their blog! http://www.ccakidsblog.org/
Children’s Craniofacial Association is a national, 501(c)3 nonprofit organization, headquartered in Dallas, Texas. Nationally and internationally, CCA addresses the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions. CCA is an organization that umbrellas many different craniofacial diagnoses.
What is a craniofacial disorder?
A craniofacial disorder refers to an abnormality of the face and/or the head. Craniofacial differences can result from abnormal growth patterns of the face or skull, which involves soft tissue and bones. A craniofacial condition may include disfigurement brought about by birth defect, disease or trauma.
Attendee’s had an amazing time while connecting with old friends and making new ones. The CCA website is full of great information and contact info if you have questions – link: https://ccakids.org/ Thank you CCA for a wonderful opportunity!
CCA Retreat 2016 Video
Marc: Age 6
Diagnosis: WPW (Wolff-Parkinson-White Syndrome) Asymptomatic Cause