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CCD Smiles-Cleidocranial Dysplasia

CCD Smiles

This year was the first ever CCD Smiles conference in Salt Lake City, Utah. I love it when these events are close to home! CCD SmilesI 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.

CCD Smiles

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!

CCD Smiles

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

https://www.facebook.com/CCDSmiles/

CCD Smiles

 

Children’s Craniofacial Association Retreat 2018

CCAThis 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.

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.

CCANewLogoAttendee’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!
Childrens Craniofacial Association

CCA Retreat 2016 Video

Crowdrise fundraiser has begun!

A HUGE thank you to everyone who participated and supported Aware of Angels during this fundraiser and all other times! xoxo

AOA

Calling on everyone!! 🙂 We have officially started a Crowdrise fundraiser for the next 30 days. We have families and children in over 15 united states and 3 countries that want us to come out for a photography session and to participate in our global awareness project this year! This will be somewhat low-key on our part, mostly due volunteer availability for posting and sharing and this is why we need your help! We need to raise a lot of funds!! This is not just for individuals, we would love corporate sponsorship as well. Funds do not have to be sent through crowdrise, feel free to contact us for another option. We are a registered 501(c)3 nonprofit organization so your donations may be tax deductible. Please consider donating to a very worthy cause and sharing about the fundraiser & what it means to you. These children we photograph and share about are either undiagnosed or have a rare medical condition. We need to raise awareness for them as a beautiful individual as well as their diagnosis (or the need for one). Awareness will make connections for these families on a personal level as well as with in the medical industry. To read more about this, here is the link for the fundraiser:   https://www.crowdrise.com/o/en/team/raising-awareness-and-providing-memories-for-children-with-rare-medical-conditions    and here is the link for the crowdrise AOA page:      https://www.crowdrise.com/aware-of-angels   Thank you!! xo

Both pages have beautiful video’s of our families and a special thanks to Joe Rawlins and Matt Eastin for creating them for us.

AOA

https://vimeo.com/147548366