AmeriFace

Making a World of Difference in a World of Facial Differences

aka cleftAdvocate   |   Las Vegas, NV   |  http://www.ameriface.org

Mission

The mission of AmeriFace is to provide information and emotional support to individuals with facial differences and their families and increase public understanding through awareness programs and education.

We support individuals whose facial differences are present at birth, as well as those who have acquired facial differences as a result of illness, disease or trauma, such as stroke, cancer, accident and burns.

Ruling year info

2004

Executive Director

Ms. Deborah Oliver

Main address

PO Box 751112

Las Vegas, NV 89136 USA

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Formerly known as

AboutFace USA (Corporate name change in 2008)

EIN

32-0085490

NTEE code info

Birth Defects (G20)

Health Support Services (E60)

Alliance/Advocacy Organizations (W01)

IRS filing requirement

This organization is required to file an IRS Form 990-N.

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Communication

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

AmeriFace Programs

Our national programs include: - Websites at www.ameriface.org and www.cleftadvocate.org(http://www.cleftadvocate.org) ; www.crouzon.org(http://www.crouzon.org) ; www.goldenharsyndromesupport.org(http://www.goldenharsyndromesupport.org) ; The Pathfinder Outreach Network, a local/regional system of education and support for families throughout the country; The Family-to-Family listserv, hosted by the Genetic Alliance; The North American Craniofacial Family Conference (NACFC); - And much, much more!

Population(s) Served
People with disabilities
People with diseases and illnesses

Serving individuals born with cleft lip and/or palate, and their families.

Population(s) Served
Children and youth
Adults

The recognized leader in education and outreach for the cleft/craniofacial community.

http://pathfinders.ameriface.org

Population(s) Served
Children and youth
Adults

AmeriFace brings to the craniofacial community a unique opportunity to explore and exchange resources, learn from experts, and network with individuals and families from around the country!

Keynote and General Sessions will be enhanced with Specialty Workshops for all participants.

Population(s) Served
Children and youth
Adults

Where we work

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

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.

Financials

AmeriFace
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Operations

The people, governance practices, and partners that make the organization tick.

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  • Analyze a variety of pre-calculated financial metrics
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  • Compare nonprofit financials to similar organizations

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AmeriFace

Board of directors
as of 11/14/2022
SOURCE: Self-reported by organization
Board co-chair

President David Reisberg

Director, Craniofacial Center, University of Illinois Medical Center, Chicago


Board co-chair

Vice President Jeff Moxley

Oral/Maxillofacial Surgeon

Todd Beutler

Attorney, Lane Powell

David Reisberg, DDS

Director, Craniofacial Center, University of Illinois, Chicago

Erik Kabik

Celebrity & Architectural Photographer

Jeff Moxley, DDS, PC

Oral/Maxillofacial Surgeon

Meredith Albert, PhD

Clinical Psychologist

Ann Lindahl

Parent Liaison

Christopher McGarey

Commercial Real Estate Professional

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? No
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? No
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? No
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No