FACES: The National Craniofacial Association began in 1969 as the Debbie Fox Foundation. Debbie, a young girl from the Chattanooga, Tennessee area, was born with a gaping hole where her face should have been. At the time, Dr. Milton Edgerton, who practiced at Baltimore’s Johns Hopkins Medical Center, agreed to try to build a face for Debbie, and the foundation was established to help pay for her travel expenses.
Ultimately Debbie underwent 58 surgeries before her 22nd birthday. National publicity about her struggle and recognition of Dr. Edgerton’s unique talents brought requests for help from parents with children in similar situations. With a $5,000 grant from The Hearst Foundation and other donations from the Chattanooga area, the Foundation began to help other children travel to Baltimore and new craniofacial centers as they were established.
In 1985, the Board of Directors changed the name of the organization to The National Association for the Craniofacially Handicapped, to reflect its expanding services and national client base. The nickname “FACES” was adopted at the same time. Shortly thereafter, a national development program was launched with appeals to various foundations and corporations. Grants from Dow Chemical Company, the UPS Foundation, The Ronald McDonald Children’s Charities, The Max & Victoria Dreyfus Foundation, The Benwood Foundation, and The Mattel Foundation enabled FACES to hire a full-time executive director and secretary, begin a major publicity drive, publish a quarterly newsletter, develop a national support network, and most importantly…accept new clients. In April of 1997, FACES became FACES: The National Craniofacial Association.
Today FACES is a vital link in the craniofacially different community. Thirty years ago, a child born with a severe craniofacial difference was destined to be not only disfigured forever, but was also assumed to be totally mentally incapacitated. Most of these children were institutionalized for life. Today, a child born with hemifacial microsomia, nasal encephalocele, Apert, Crouzon, or Treacher-Collins syndromes, or any number of specific birth defects is diagnosed within weeks. Physicians now know that having a craniofacial difference rarely results in any type of brain damage. They also know that corrective surgery can, in many cases, begin as early as three months, thus one of the first calls made by the parents of many of these children is to FACES.
WHAT DOES FACES DO?
Out of every 1000 babies born in the U.S., 1 to 2 will have craniofacial disorders. Parents of these babies need somewhere to turn for valuable information and support. For over 42 years, FACES: The National Craniofacial Association has been there. Thank you for helping FACES as we provide needed services to these families!
FACES assists families who would otherwise be financially unable to take their child to major medical centers where specialized craniofacial teams can provide the safest and most advanced treatments for building a face and skull.
Assistance in locating treatment centers…
FACES maintains information on specialized surgical centers. Although FACES does not refer clients to specific hospitals or doctors, we do provide valuable information so that each family can make an informed decision.
Clearinghouse of information on craniofacial disorders...FACES works diligently staying abreast of the latest research & resources available concerning all types of craniofacial conditions.
Education and public awareness…FACES produces newsletters, informational packets, and an ever-changing web site in an effort to increase public awareness of craniofacial disorders. Let us speak to your group!
Support groups…FACES helps to alleviate the emotional isolation that is often felt by patients and families by connecting them with others sharing a similar medical situations.
FACES: The National Craniofacial Association is a non-profit organization serving children and adults throughout the United States with severe craniofacial deformities resulting from birth defects, injuries, or disease. There is never a charge for any service provided by FACES. Our service goals address three distinct areas:
- Client Travel
- Public Awareness and Understanding
- Information and Support
FACES provides financial assistance for expenses incurred while traveling away from home to a craniofacial center for reconstructive surgery and/or evaluation. This assistance is offered on the basis of financial and medical need and includes transportation, lodging, and food. Insurance and government medical assistance programs help to pay for surgeries but rarely pay for travel expenses. FACES does not choose the physicians or medical centers for the clients; that choice is made entirely by the family. Once a client is approved by FACES, every attempt is made to continue aid for as long as it is needed. FACES also pays for one accompanying person for each trip.
Public Awareness and Understanding
Increasing public awareness and understanding of our work and the plight of those with severe craniofacial problems is the key to the future of FACES and our clients. In addition to a quarterly newsletter which over 20,000 copies are mailed to client families, supporters, professional groups, and the medical community, FACES has an ever-growing national speaker bureau of clients, client's families, and volunteers who speak to groups about the challenges and needs of those with craniofacial differences.
Information and Support Network
FACES furnishes information about craniofacial centers and publishes a brochure which further details the scope of our organization. FACES provides referrals to other available resources and organizations, maintains up-to-date information on specific diseases or birth defects, and assists in getting families in touch with other families who have a child with the same disorder. By connecting these families, FACES gives them the means to alleviate the emotional isolation that is often felt by patient and family. By sharing information and providing support, FACES helps to build a framework in which clients and their families can cope.