PLATINUM2023

American Cleft Palate Craniofacial Association

Leading interdisciplinary cleft and craniofacial care so patients and families thrive.

aka ACPA   |   Chapel Hill, NC   |  www.acpa-cares.org

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Mission

The American Cleft Palate Craniofacial Association (ACPA) is an international non-profit association of health care professionals and others who treat oral cleft and craniofacial conditions. ACPA has more than 2,000 members representing 30+ disciplines in more than 50 countries. Its mission is to empower and support cleft and craniofacial healthcare professionals and the patients they serve through research, education, and advocacy. We promote team care and professional collaboration to ensure the highest quality resources are available to all with craniofacial differences throughout their healthcare journey.

Ruling year info

1956

Executive Director

Adam Levy

Main address

510 Meadowmont Village Circle, Suite 377

Chapel Hill, NC 27517 USA

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EIN

43-0793521

NTEE code info

Medical Disciplines (G90)

IRS filing requirement

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

Sign in or create an account to view Form(s) 990 for 2022, 2021 and 2020.
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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?

ACPA Family Resources

Educational Resources
ACPA works with cleft and craniofacial experts to develop educational resources to ensure patients and families receive research-based and trusted information. ACPA Family Resources offers more than 30 publications to help parents learn about their child's diagnosis and navigate every stage of their treatment journey.

College Scholarships
ACPA awards three college scholarships annually from the Randall/LaRossa College Scholarship Fund to outstanding students born with cleft lip/palate and other craniofacial conditions.
• Honors Scholarship $10,000
• General Scholarship $5,000
• Vocational Scholarship $5,000

Cleft Courage Bear
Since 1989 the ACPA Cleft Courage Bear, custom-made by GUND, Inc, with stitches across the upper lip has become a lifelong friend to children of all ages. This fuzzy companion brings cuddles and smiles at every step of their journey.

Population(s) Served
Children and youth
Adults
People with disabilities

ACPA’s Annual Meeting is a general scientific meeting with over 300 presentations. The program includes general and concurrent specialty sessions, poster sessions, panel presentations, and short courses including study sessions, and advanced courses. ACPA provides accredited continuing medical, speech, and nursing education through ACCME, ASHA, and ANCC. The meeting also includes networking opportunities such as discipline forums, special interest groups, and social events.

Population(s) Served
Academics
Adults

The treatment experience is most successful when a family is actively engaged with an interdisciplinary care team. Teams that include doctors, surgeons, speech therapists, nurses, dentists, orthodontists, and other healthcare providers who offer an integrated approach to cleft-craniofacial treatment. The purpose and goal of ACPA Team Approval is to ensure that care is provided in a coordinated and consistent manner with the proper sequencing of evaluations and treatments within the framework of the patient’s overall developmental, medical and psychological needs. This distinction is for teams that demonstrate they meet the Standards for Approval of Cleft Palate and Craniofacial Teams – standards that identify essential characteristics of quality for team composition and functioning. The standards are based off The Parameters for Evaluation and Treatment of Patients with Cleft Lip/Palate or Other Craniofacial Anomalies, which identify recommended practices for the care of patients.

Population(s) Served
Academics
Children and youth
Adults

ACPA strives to enhance and expand educational opportunities for professionals helping them to stay abreast the latest clinical innovations so they can provide the best possible care to patients. ACPA also offers research-based educational materials about cleft and craniofacial care, specifically for affected individuals and families.

Population(s) Served
Academics
Adults
Children and youth

The Cleft Palate-Craniofacial Journal, a bi-monthly international journal on craniofacial differences, is the official publication of ACPA.

The journal draws from around the world for its interdisciplinary approach to growth, development, diagnosis, and treatment — the provision of optimal clinical services — in all areas pertaining to craniofacial differences. In addition, it explores and reports on the study and treatment, including experimental and proven surgical procedures, of cleft lip, cleft palate and craniofacial anomalies. It also keeps readers in touch with the latest research in related laboratory sciences.

To access The Cleft Palate-Craniofacial Journal, visit www.cpcjournal.org.

ACPA Members receive a subscription to the Journal as part of their member benefits. View individual subscription prices without ACPA Membership or Join ACPA.

Population(s) Served
Academics

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of professional members.

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of ACPA Approved Teams

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

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.

The ACPA is dedicated to making a positive impact for our members, patients, and their families. We are prepared to provide cutting edge research and innovation through active communication and resolute advocacy. We will work tirelessly to encourage collaboration, networking, and establishing connections for the advancement of the field of cleft palate and craniofacial care.

Communication and advocacy
• Set the standard and be the source to promote team care as the best model for cleft-craniofacial care.
• Communicate the importance of access to and value of team care to legislators, the public, providers and affected individuals.

Drive excellence and innovation in education
• We will be leaders in the dissemination of evidence-based education for patients, families, and professionals.
• We will cultivate innovative multimodal educational offerings.

Research advancement, engagement, and communication
• Foster development and promote involvement in innovative research from all stakeholders.
• Promote the advancement of science via the dissemination and discussion of basic science, clinical, and outcomes research through a variety of platforms.

Collaboration, networking, and connections
• Encourage collaborations that enhance our ability to reach families and providers, locally, nationally and internationally to enable an environment that brings together families and providers across specialties and experiences.

Embrace and advance diversity, equity, and inclusion
• Promote diversity and respect; identify and dismantle barriers to involvement; and create a welcoming and inclusive environment so that all ACPA members, employees, and families can thrive.

The American Cleft Palate Craniofacial Association (ACPA) is the premier scientific resource and interdisciplinary
professional network for healthcare providers serving patients with cleft lip, cleft palate, and craniofacial differences.

At ACPA, we champion a comprehensive, team-based care approach that supports patients and families throughout their unique care journeys. Since 1943 ACPA’s scientific community has united cleft and craniofacial healthcare professionals by their passion and purpose with the research, education, and networks to provide evidence-based treatment and resources so patients and families thrive.

ACPA members represent 30+ medical disciplines, including plastic surgery, oral and maxillofacial surgery, orthodontics, otolaryngology (ENT), nursing, speech-language pathology, and more.

More than 2,000 members work with patients and conduct research in all 50 states and over 50 countries around the world.

ACPA's Annual Meeting has grown to nearly 1,000 participants annually drawing medical professionals from nearly 60 countries around the world. ACPA's Annual Meeting provides access to the latest clinical innovations and research from leading experts in the cleft and craniofacial field.

Created the ACPA Advocacy, and ACPA DEI Committees, embarking on critical initiatives that directly impact the professional lives of our members and the patients they serve.

Increased the Cleft Palate Craniofacial Journal’s impact factor to a record level of 1.915, broadening ACPA's educational reach. The Cleft Palate Craniofacial Journal, an international journal on craniofacial differences, is the official publication of ACPA
and the journal of record for the profession. The journal draws from around the world for its interdisciplinary approach to growth, development, diagnosis, and treatment — the provision of optimal clinical services — in all areas pertaining to craniofacial
differences. It also keeps readers in touch with the latest research in related laboratory sciences.

Implemented a new member-only Online Community, connecting ACPA members around the world with a more user-friendly and familiar experience. The ACPA Online Community is a place for members to ask questions, connect, network, share resources and more. Features include discussion forums, member profiles, resource libraries, blogs, and events.

Increased award amounts of our scholarships, ensuring those interested in craniofacial care have access to accredited continuing medical education opportunities, and students impacted by a craniofacial difference have support to attend college.

Launched the new Team Care Coordinator Retreat, a free virtual event for care coordinators to learn and share knowledge between care teams.

Comprehensively designed and planned a new website for ACPA to ensure research-based and trusted information is easily accessible for medical professionals, patients, and families.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

American Cleft Palate Craniofacial Association
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Operations

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

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Connect with nonprofit leaders

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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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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

American Cleft Palate Craniofacial Association

Board of directors
as of 07/26/2023
SOURCE: Self-reported by organization
Board chair

John Caccamese, MD

University of Maryland

Term: 2023 - 2023

John A Girotto, MD, MMA, FAAP, FACS

Helen DeVos Children's Hospital

Scott A. Daily, PhD, CCC-SLP

University of Iowa Hospitals and Clinics

Oksana Jackson, MD

Childrens Hospital of Philadelphia

John Caccamese, DMD, MD, FACS

University of Maryland

Adriane L Baylis, PhD, CCC-SLP

Nationwide Children's Hospital and The Ohio State University

Steven L Goudy, MD

Children's Healthcare of Atlanta

James J Cray, PhD

The Ohio State University College of Medicine

Kelly Nett Cordero, PhD, CCC-SLP

Phoenix Children's Center for Cleft and Craniofacial Care

Sean P Edwards, MD, DDS, FACS,FRCDC

University of Michigan

Deji V Fashemo, DDS, MPH

Fourth Dimension Orthodontics & Craniofacial Orthopedics at Medical City Dallas Hospital

Krishna G Patel, MD, PhD

Medical University of South Carolina

Melisande J Ploutz, CPNP, CLC

University of Rochester Medical Center

Lidsay A Schuster, DMD, MS

UPMC Children's Hospital of Pittsburgh, University of Pittsburgh

Greg Bowden

Johns Hopkins Carey Business School

Amy Mendillo, MM, MPP

Jamie L Perry, PhD, CCC-SLP

East Carolina University

Adam M Levy, CAE

American Cleft Palate Craniofacial Association

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? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • 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? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 7/26/2023

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 07/26/2023

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Policies and processes
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.