AmeriFace

AmeriFace provides comprehensive information and support to patients and families regarding the treatment of cleft/craniofacial birth defects and acquired facial differences.

We aid in eliminating healthcare disparities by providing referrals to qualified cleft/craniofacial teams and professionals, assisting with insurance appeals, and providing medical financing resources, both public and private, to ensure no patient goes without proper medical care.

We provide emotional support for parents and children and work to eliminate cultural/social barriers that are often roadblocks to families seeking services and support for facial birth defects.

We encourage social acceptance of individuals with facial deformities for who they are, not what they look like, and host workshops and conferences designed to teach and encourage social and behavioral skills that will strengthen the self-esteem and character of children, teens and adults with facial deformities.

We encourage families to seek early intervention services for speech and other appropriate therapies, as we teach and promote the concept of patient- and family-centered care.

We work to educate medical and education professionals about the real and perceived gaps in services, as reported by families, and work with them to bridge those gaps.

We help secure medical financing for cleft/craniofacial patients by offering free insurance pre-authorization and appeals assistance, referral to government and community-based medical financing programs and organizations providing pro bono medical and dental care.

Our hope is that families would be introduced to our free, integrated services as soon after diagnosis as possible.

AmeriFace programs provide educational and networking opportunities for patients and families on a daily basis through the Pathfinder Outreach Network, a nationally-recognized program offering a toll-free support hotline, on-line support at the Family-to-Family Connection, websites at www.ameriface.org and www.cleftadvocate.org, newborn outreach programs at area birthing hospitals throughout the country, an annual family conference and periodic newsletters.

AmeriFace recently experienced new growth in outreach programs addressing the needs of Crouzon, Goldenhar and Treacher Collins patients.

Our goal is to interface with each of the families already associated with craniofacial teams of medical professionals, and bring patients and families into the network by having a presence in birthing hospitals, ultrasound labs and pediatrician's offices to make sure newborns and their parents are never lacking the support they so desperately need.

Staff and peer counselors work diligently to educate medical and other professionals about the needs of families, both medical and emotional.

We address healthcare disparities in the craniofacial patient population by educating families about the need for interdisciplinary team care and by helping to secure insurance coverage and/or other medical financing through social programs and like-minded charities. We look forward to a time when insurance coverage will not be a battle of “cosmetic" versus “reconstructive" or “medical" versus “dental". We are working at the state and federal levels to ensure patients are not refused critical services necessary for the treatment of the complex needs of cleft/craniofacial patients.

In addition, AmeriFace staff and board members continue to interface with and serve in various capacities alongside a number of national and international organizations, including the American Cleft Palate-Craniofacial Association (ACPA), the Cleft Palate Foundation (CPF), the National Institute of Dental and Craniofacial Research Institute (NIDCR), the Centers for Disease Control (CDC), and many others. These partnerships continue to enhance our organization's outreach capacity and highlight the need for additional research and support of cleft/craniofacial patients and their families.

AmeriFace services and support are available free of charge, regardless of income, geography, type of facial difference or any other factor. Our staff and Pathfinder volunteers work together to make themselves available 24/7, 365 days a year. We are often contacted by cleft/craniofacial team coordinators, doctors, nurses and hospitals on behalf of families. Requests include information on emotional support, resources for supplies, insurance issues and access to community-based services.

It is no secret that the economic downturn has played a significant role in how non-profit organizations raise funds and deliver services to their clients. However, since AmeriFace and, in particular, the Pathfinder program were originally built and have been constantly maintained as volunteer-based programs, unlike similar organizations struggling to meet payroll and pay rent and utilities, the program continues to build momentum and strength. There is no threat that a grantor would award funds only to find the organization has had to close its doors. On the contrary, the absolute best use of funds can be realized by supporting the Pathfinder Outreach Network.

AmeriFace is run on 100% volunteer power, including the services of the Executive Director and all organization staff. Therefore, our organization can guarantee the absolute best use of funds for its continuing outreach efforts, including printing and distribution of materials, conferences and workshops, insurance and medical financing assistance, networking events for children and their families, a resource bank with special feeding devices, and more.

Established in 1991, AmeriFace continues to meet its vision of “making a world of difference in a world of facial differences" by being the largest, most active support organization for the cleft/craniofacial community. We revise our strategies and goals often, an on-going process driven by the needs of our patients and families.

AmeriFace has yet to meet its goals for the Face of Change initiative. Launched in 2009 to highlight multiple disparities in health care for cleft/craniofacial patients in the United States (e.g., access to and continuity of care, insurance/medical financing challenges), the timing of the launch was unfortunate due to the on-going financial crisis.

Through the Face of Change program, our organization continues to seek pro bono care for our US-born patients. Unfortunately, a focus on international pro bono care by large internationally-focused organizations continues to misrepresent cleft/craniofacial care to the general public as a one-time surgery “fix," which is not reality.

AmeriFace continues to make education of the general public a priority in the United States and around the world, in hopes of increasing support for and understanding of cleft/craniofacial patients and the complex medical and psychosocial needs of the community.