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Line 3: {{More citations needed\|date=January 2020}} }} The '''Children's Craniofacial Association''' ('''CCA''') is a United States -based [[nonprofit organization]] ~~whose mission is to empower and give hope to~~supporting individuals and families with facial ~~anomalies~~disfigurements. CCA is a family support organization recognized by governmental, educational and medical healthcare agencies across the US.<ref>{{cite web\|url=https://www.ninds.nih.gov/Disorders/Support-Resources/Patient-Organizations\|title=Patient Organizations - National Institute of Neurological Disorders and Stroke\|website=www.ninds.nih.gov}}</ref> <ref>http://www.uic.edu/com/surgery/plastic/patient_craniofacial.htm Members of the Center also work closely with national organizations such as AboutFace USA, The Children's Craniofacial Association, FACES, The National Foundation of Ectodermal Dysplasia, the Cleft Palate Foundation, and The Smile Train to provide resources and support for patients with facial differences and their family members.</ref> <ref>{{cite web\|url=http://www.kumc.edu/gec/support/facial_d.html\|title=Facial/ craniofacial anomalies\|website=www.kumc.edu}}</ref> ==Children's Craniofacial Association's National Spokesperson is actor, entertainer Cher==▼ ~~==About the Organization==~~ Children’s Craniofacial Association, a 501(c)(3) nonprofit organization founded in 1989, serves about 20,000 families per year. CCA’s mission is empowering and giving hope to individuals and families affected by facial differences. CCA envisions a world where all people are accepted for who they are, not how they look. Governed by a board of directors, CCA also maintains an Honorary Medical Board composed of nineteen of the country’s most respected craniofacial reconstructive surgeons. A Medical Advisory Committee composed of specialists on craniofacial teams around the country, plays a vital role in CCA’s development of educational materials and other supporting activities. We aim to allocate at least 80% of our revenue generated to programs each year. In 2016, we achieved that goal with 82% of our expenses going to program activities. We operate with a lean staff, a dedicated board of directors, and volunteers and community partners across the US and beyond. 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. We understand the medical term is "disfigurement," but at CCA, we use the word "difference." Each year, more than 100,000 children <ref>https://www.who.int/genomics/anomalies/en/Chapter02.pdf</ref> <ref>https://www.aaoms.org/docs/govt_affairs/advocacy_white_papers/craniofacial_anomalies.pdf</ref> <ref>https://www.scielo.br/scielo.php?script=sci_arttext&pid=S1415-790X2011000100014</ref> are either born with or develop a craniofacial condition. Their parents and families try to understand what they have and how to help them. Parents struggle to cope with the emotional and physical aspects of having a child with craniofacial anomalies and the social alienation of appearing different. ~~CCA was founded to help these children, and today provides the support they need to lead positive, productive lives.~~ ▲==Children's Craniofacial Association's National Spokesperson== Cher became CCA's National Spokesperson in 1990. In 1985, Cher starred in the movie [[Mask]],a film about the life of Rocky Dennis, who had a rare craniofacial condition called Craniodiaphyseal Dysplasia. Cher attended an event in Washington, DC in September 1990, where families affected by craniofacial conditions testified before the House Budget Committee. During that week, she joined ten families on a visit to the White House hosted by then, First Lady, [[Barbara Bush]]. During her [[Love Hurts]], [[Do You Believe? Tour\|Believe]] and [[Living Proof: The Farewell Tour\|Farewell Tour]]s, Cher often invited children with craniofacial conditions back stage to visit. ===Publications=== ~~==Programs and Services==~~ ~~===Family Networking===~~ ~~Families who are affected by facial differences feel alone and isolated. CCA puts families in contact with others having similar experiences for the purpose of reciprocal support.~~ Each year, we host regional events so families can gather together and learn from one another. Each June, we host the Annual Family Retreat and Educational Symposium. This is a 4-day event, which rotates across the country, hosted in a hotel. Families travel to the event (scholarships are available) and the programming starts Thursday with an all-day Symposium, featuring medical professionals and inspirational speakers. The rest of the weekend features fun activities for children to adults, parents and siblings, and more. ~~===Annual Family Retreat History ===~~ During a late night visit in Washington, DC with several families with children with craniofacial differences, Cher suggested an annual meeting be held where families could get together to share information and support. In 1991, Children's Craniofacial Association held its first Annual Cher's Family Retreat at Disney World in Florida. Since then subsequent retreats have been held each year in various cities across the United States. ~~Here is a list of the Retreats:~~ * 1991 - ORLANDO, FL * 1992- ORLANDO, FL * 1993- PHOENIX, AZ * 1994- INDIANAPOLIS, IN * 1995- BOSTON, MA * 1996- CHICAGO, IL * 1997- SAN DIEGO, CA * 1998- DALLAS, TX * 1999- ORLANDO, FL * 2000- DENVER, CO * 2001- ATLANTA, GA * 2002- ST. LOUIS, MO * 2003- WASHINGTON, D.C. * 2004- TEMPE, AZ * 2005- NASHVILLE, TN * 2006- HERSHEY, PA * 2007- SLC, UT * 2008- MYRTLE BEACH, SC * 2009- GRAPEVINE, TX * 2010- BOSTON, MA * 2011- LOUISVILLE, KY * 2012- TEMPE, AZ * 2013- ORLANDO, FL * 2014- ST. LOUIS, MO * 2015- NEWPORT BEACH, CA * 2016- FT. LAUDERDALE, FL * 2017- RESTON, VA * 2018- SLC, UT * 2019- SCOTTSDALE, AZ * 2020- Canceled due to COVID-19 [AUSTIN, TX] ~~===Financial Assistance===~~ CCA has a financial assistance program that covers costs of food, travel and lodging for families who must travel to receive medical care. Families can apply by contacting our Program Director and CCA distributes funds on a rolling basis, annually, until all budgeted funds are expended. ====Quarterly Newsletter==== CCA publishes a quarterly newsletter containing articles written by craniofacial surgeons, healthcare providers, family members and others~~. These publications are generally mailed, but due to COVID-19 are now exclusively online at their website, ccakids.org~~. ==~~==Public~~See ~~Awareness==~~also== [[Goldenhar syndrome]] One of the most important goals of CCA is to promote social acceptance of children and adults with facial differences. It usually only takes one conversation to help someone understand that we are more alike than different. [[Peter Dankelson]] We believe that in order for the general public to accept facial, physical, and other differences, they must see and understand them. Furthermore, is important to see positive role models with facial differences in the media. ~~We encourage our families and friends to contact your local TV and radio stations, plus podcasters and bloggers you follow, to schedule interviews and awareness stories in your local communities.~~ ~~Finally, our #ChooseKind school education program helps students with facial differences become change agents and advocates for social awareness and acceptance in their schools and cities.~~ ~~Remember, each September is Craniofacial Acceptance Month and there are variety of events scheduled to help you advocate for acceptance.~~ ~~====#ChooseKind Initiative====~~ Our #ChooseKind Initiative aims to develop kindness education and prevent bullying, intolerance, and isolation that so many children face at school each day. With escalating problems of bullying, violence, isolation, loneliness, and intolerance in schools, this message has never been more relevant. Our Choose Kind Initiative started in 2012 when the book Wonder was published by R.J. Palacio. The novel, now a national bestseller, features the story of 10-year-old August “Auggie” Pullman, a boy with a craniofacial condition. This book follows Auggie as he attends his first year attending school, after previously being home schooled. He experiences the trials and triumphs of most kids going to a new school, and also unique challenges based on his appearance. This book is changing lives in classrooms across the country and teachers send reports of its impact on their students on a consistent basis. The book encourages kids to Choose Kind, meaning choose to be kind, rather than popular or right. While the story is about a student with a craniofacial condition, the message applies to everyone. When this book came out, CCA knew it was an incredible tool for our families, students, and community. We ordered a special edition book with our logo, recommended resources, a special foreword from CCA members, and a letter from the author, Palacio, to CCA Kids. To date, we have ordered 27,500 books and we have been distributing them for the past two years to schools in Dallas, throughout Texas, and in other states. ~~====Speakers' Bureau====~~ ~~The CCA’s Speakers’ Bureau launched in 2018 to create a platform for CCA kids and adults to share their personal stories in front of an audience.~~ The Bureau provides training and guidance equipping our speakers with the resources and guidelines to build on their current skills, while providing avenues to attain confidence and knowledge to speak in front of a live audience. Our #ChooseKind initiative is incredibly unique because it benefits CCA Kids/Adults (affected individuals with craniofacial conditions) by giving them a positive platform and a tool to talk about their difference confidently, but also is incredibly impactful to students who read the books and hear these presentations. Teachers report that after using our free curriculum and participating in a presentation visit or Skype session, students are more outgoing and more patient with each other, and bullying problems get resolved. This proactive kindness education is even stronger and more powerful than bullying prevention alone, because our resources help students form values that will stay with them their entire lives. The #ChooseKind message is truly universal because at some point in all of our lives we feel unsure, self-conscious, and out of place. If your school is located in an area without a CCA Family to represent, CCA can set up a Skype or Zoom video session or a pen pal program. These activities reinforce the message of the book (if using our free curriculum/ i.e. Wonder), #ChooseKind, and to strengthen empathy bonds in students across the country. Teachers love these opportunities to bring the concepts to life. Some classrooms have been so moved that they’ve responded in many ways, like holding school-wide walk-a-thons and 5Ks for CCA, others starting marble jars to count kind acts, some setting up peer mentoring programs, and a few special communities have hosted city-wide assemblies. == References == {{Reflist}} ~~== External links ==~~ * [http://www.uic.edu/com/surgery/plastic/patient_craniofacial.htm ] * Official Site [http://www.ccakids.org] * Children's Craniofacial Association Profile on Guidestar [http://www2.guidestar.org/organizations/75-2265649/children's-craniofacial-association.aspx] [[Category:Medical and health organizations based in Texas]]