The Children's Craniofacial Association - Help us help them
CCA disseminates information to educate craniofacial patients and their families, health care providers and the general public regarding craniofacial conditions. CCA also promotes public awareness of craniofacial conditions and social acceptance of individuals with facial disfigurement. Craniofacial patient families often call CCA seeking emotional support and to discuss problems, and to identify resources. Through their database they are able to network families with support groups and/or others who have similar conditions and experiences. They also keep a list of helpful resources and are always willing to listen and offer emotional support to family members who need a shoulder to lean on.
Every year, the CCA has an annual retreat where families from all over the United States get to go to meet other families with similar situations and other children with facial differences. 2010 was our first year that we got to go to one of these events and there are almost NO WORDS to describe the affect it has had on our family in the most positive of ways. Read Trevor's story about retreat in the September issue of the CCA Newsletter on www.CCAKids.org
CCA provides a toll-free 800 number since many families do not have the resources to pay for long distance phone calls. It is very possible that without referral to a craniofacial center, affected children would not receive the comprehensive, quality medical treatment imperative to optimum results. Via the toll-free hotline CCA also provides much needed educational materials and emotional support.
Since there are relatively few quality craniofacial centers in the United States, many families must travel to receive this quality care. The treatment of craniofacial patients may require from one to as many as twenty or more surgeries. Therefore, even families with insurance are often unable to meet the financial requirements to travel to receive quality care for their children. CCA offers these families funds for food, travel, and lodging through its financial assistance program. CCA also helps families locate discounted hotel rates as well as donated airfare.
One of the most important goals of CCA is to promote social acceptance of children and adults with facial disfigurement. CCA believes that in order for the general public to accept these and any differences, they must see and understand them. With the support of Cher and many families, CCA has been featured twice on the Maury Povich Show, had feature articles in People, Teen People,Allure, Abilities (Canada), Family Circle and Parade magazines. Newspaper articles have appeared in The Washington Post, The Dallas Morning News, Minneapolis Star Tribune, Fort Worth Star Telegram, The Atlanta Journal Constitution, Rapid City Journal, and the Buffalo Chip Gazette.