ACPA is proud to launch a new Self-Advocacy Webinar Series designed for individuals and families affected by cleft and craniofacial differences. Running from June 2026 through early 2027, this series will provide practical tools, personal insights, and empowering conversations focused on navigating healthcare, education, relationships, transitions to adulthood, and self-advocacy at every stage of life.
Led by individuals with lived experience, these webinars aim to foster confidence, connection, and community. Explore the upcoming webinar topics below and register for free—exact dates, additional details, and registration will be added as they become available.
Questions? Contact us at info@acpacares.org.
Tuesday, June 30, 7:00-8:00 PM EDT
Led by presenters with lived experience and grounded in emerging research, this webinar will help teens and young adults understand what to expect when leaving behind pediatric care and provide practical tools to own your appointments, navigate insurance, and advocate for yourself in the medical system.
Presenters:
Paul Bigg, DMD is a general dentist and the director of special care dentistry at A. T. Still University, Missouri School of Dentistry and Oral Health who helps those with craniofacial anomalies and other differences through dental care, research, advocacy and education.
Ethan Richlak is a medical student at the University of Pittsburgh, researcher, and global cleft advocate whose research and advocacy efforts are focused on the intersection of clinical care, psychosocial outcomes, and global health policy.
Thursday, August 13, 1:00-2:00 PM EDT
Learn how to identify stereotypes, understand media portrayals, and use social media to promote accurate representation and positive visibility.
Presenter:
Erica Klauber
Registration coming soon!
Date and Time TBD
Learn how to share your personal journey with clarity and confidence to raise awareness, inspire others, and advocate for change.
Presenter:
Jackson Doane
Wednesday, October 7, 7:00-8:00 PM EDT
Learn how to ask questions, understand treatment options, plan for surgeries, seek second opinions, and actively participate in treatment decisions.
Presenters:
Caitlin Church, BS serves as the cleft and craniofacial program coordinator at Riley Hospital for Children at IU Health, a role she has now held for 12 years. She helps orchestrate the team’s weekly clinic, provides administrative oversight of the team’s operations, and organizes educational and supportive opportunities for patients and their families, including Camp About Face. Being born with a cleft lip and palate (and later diagnosed with craniosynostosis) gives Caitlin a unique perspective on her job and the patients she serves. The Indianapolis Business Journal named Caitlin a 2020 Health Care Hero honoree in the non-physician category. She holds a Bachelor of Science degree in communication with a concentration in public relations from the University of Indianapolis.
Matthew Ford, MS, CCC-SLP serves as the Clinical Coordinator of the Cleft-Craniofacial Center at UPMC Children’s Hospital of Pittsburgh. He is the craniofacial team’s senior speech pathologist and cleft service provider with experience in the diagnosis and treatment of structurally related speech production and feeding/swallowing disorders. He has served on the multidisciplinary cleft team since 1997. He has faculty appointments at The University of Pittsburgh and Duquesne University. Matt participates in ongoing research with individuals affected by cleft and craniofacial anomalies and has lectured both nationally and internationally. He is a board member of the American Cleft Palate Craniofacial Association, past chair of the ACPA’s Family Services Committee and is co-chair of the Care Coordination special interest committee. Matt was born with a bilateral cleft lip and palate and strives to provide the best services possible to his patients and educate others about craniofacial conditions.
Date and Time TBD
Practical tools to strengthen resilience and self-worth, along with strategies for recognizing, preventing, and responding to bullying and hurtful behavior in schools, social settings, and online environments.
Presenter:
Dr. Eric Riklin is the Pediatric Psychologist within the Cleft and Craniofacial Clinic at the University of Minnesota School of Dentistry, as well as a Senior Clinical Psychologist in the Child and Adolescent Psychiatry (CAPS) Clinic at Hennepin Healthcare. His research has focused on the psychosocial needs of youth with medical conditions (more specifically, cleft/craniofacial conditions) and determining efficacious psychotherapeutic interventions for these populations. Dr. Riklin’s training has spanned across multiple settings providing long-term psychotherapy, behavioral health screening, in-person and online support groups, and brief family-centered consultations to children, adolescents, young adults, and families with a wide range of psychiatric, medical, and behavioral needs. He has over 60 publications and presentations, and has given multiple talks at various conferences on resilience, efficacious psychotherapeutic interventions, and the mental health of youth with chronic medical conditions. Dr. Riklin was born with Crouzon syndrome, a very rare craniofacial diagnosis that manifests as a facial difference and has required 25 surgeries. His personal and professional experiences to date have crystallized his passion for working as a clinical psychologist with pediatric patients, and their families, as they navigate various medical and mental health needs.
Date and Time TBD
Strategies for caregivers to advocate with their child, including guidance on IEPs/504 plans, school and workplace accommodations, ADA protections, and empowering children to build self-advocacy skills from early childhood through adolescence.
Presenter:
Suzanne Santomieri
Date and Time TBD
Understand how to work with insurance providers, appeal denials, access financial support, and ensure coverage for necessary care.
Presenter:
Dr. Kristin Pfeifauf is a PGY-2 Family Medicine resident at the University of Florida College of Medicine Community Health and Family Medicine Residency Program. She earned both her medical degree and law degree from Washington University in St. Louis. Dr. Pfeifauf completed a two-year research fellowship with the Cleft and Craniofacial Team at St. Louis Children’s Hospital under Principal Investigator Dr. Kamlesh Patel, where her research focused on insurance coverage and barriers to care for cleft and craniofacial patients, as well as patient-centered care and shared decision-making. As both a physician and attorney, Dr. Pfeifauf brings a unique interdisciplinary perspective to healthcare advocacy, insurance navigation, and patient access to care. She also has lived experience as a person born with cleft lip, cleft palate, and hemifacial microsomia, giving her personal insight into the challenges many patients and families face when seeking coverage for medically necessary care.
Wednesday, February 24, 6:00-7:00 PM EST
Tips for navigating social situations, building positive relationships, and connecting with supportive peer and community networks.
Presenter:
Ashley Barbour was born with a bilateral cleft lip and palate. She began sharing her journey with cleft in the United States and discovering self-acceptance a few years ago in her blog, CleftLove: Learning to Love My Smile. She documents her story honestly and vulnerably to raise awareness of cleft and to give a public voice to this personal journey. Ashley is a passionate activist for the cleft community. Her hope is to help create a kinder world for people living with facial differences around the globe. You can find her @CleftLove on Facebook and TikTok and @cleftloveig on Instagram.
