Children's Craniofacial Association
The Children's Craniofacial Association (CCA) is a United States based nonprofit organization whose mission is to empower and give hope to individuals and families with facial anomalies. CCA is a family support organization recognized by governmental, educational and medical healthcare agencies across the US.[1] [2] [3]
Children's Craniofacial Association's National Spokesperson is actor, entertainer Cher
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, Believe and Farewell Tours, Cher often invited children with craniofacial conditions back stage to visit.
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.
Annual Cher's Family Retreat
During a late night visit in Washington, DC with several craniofacial families 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.
Financial Assistance
CCA had a financial assistance program that covers costs of food, travel and lodging for families who must travel to receive medical care.
Publications
Quarterly Newsletter
CCA publishes a quarterly newsletter containing articles written by craniofacial surgeons, healthcare providers, family members and others.
Syndrome Booklets
A Guide To Understanding Apert Syndrome
A Guide To Understanding Cleft Lip and Palate
A Guide To Understanding Craniosynostosis
A Guide To Understanding Crouzon Syndrome
A Guide To Understanding Facial Palsy
A Guide To Understanding Fibrous Dysplasia
A Guide To Understanding Frontonasal Dysplasia
A Guide To Understanding Hemangiomas
A Guide To Understanding Hemifacial Microsomia
A Guide To Understanding Microtia
A Guide To Understanding Moebius Syndrome
A Guide To Understanding Pfeiffer Syndrome
A Guide To Understanding Pierre Robin Sequence
A Guide To Understanding Treacher Collins Syndrome
One Page Overviews
Sleep Apnea
What to Expect When Your Child Goes to Surgery
What to Bring to the Hospital
Parents: You are the Official Care Manager!
Empowering Children to Cope with Teasing
Apert Feet
A Parent's Journey to Acceptance
Anthropology and Craniofacial Anomalies
Cleidocranial Dysplasia
Dramatically Increasing the Quality of Life with Prosthestic Devices
Hydrocephalus
Tips on Dealing With An External Distraction Device
Fostering Tolerance: Ways Parents and Kids Can Stand Up to Bullying
References
- ↑ http://www.ninds.nih.gov/find_people/voluntary_orgs/volorg858.htm
- ↑ 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.
- ↑ http://www.kumc.edu/gec/support/facial_d.html