ACPA occasionally hosts free discussion forums for individuals and families affected by cleft and craniofacial differences. These forums are designed to be both educational and interactive, offering opportunities to learn, connect, and engage with others in the community.
Explore upcoming and past discussion forums below. Register for upcoming forums or watch recordings on demand.
Upcoming Forums
Thursday, May 21, 3:00-4:00 PM EDT
Presenter: Diana Lora Parvu, MD, PhD
Agenda:
- Welcome and background of the study
- Overview of research findings comparing the psychological impact of cleft lip and scoliosis (aesthetic versus functional sequelae)
- Emotional and social challenges faced by adolescents with cleft lip
- What families may not always see: identity formation and vulnerability during teenage years
- The importance of lifelong psychological support and multidisciplinary care
- Live Q&A session
Wednesday, July 15, 2:00-3:00 PM EDT
Presenter: Katelyn Makar, MD
Agenda:
- Define preference-sensitive surgical decisions, provide examples within cleft surgery
- Define the shared decision-making model in pediatrics and how roles evolve as children mature
- Equip patients and parents with key questions to ask to assist in values clarification when making decisions about surgery
- Live Q&A session
Past Discussion Forums
Held on March 27, 2025
Speaker Luci Capo Rome is a retired advanced practice registered nurse/nurse practitioner, poet, author, fitness promoter, yogi and advocate, born with a severe and complete bilateral cleft lip and palate. Her mission is advocacy for mature adults affected by craniofacial/facial difference who may feel isolated and ignored due to their appearance and or speech, not meeting other cleft affected adults; feeling like they are not receiving updated information regarding dental care and support from the medical community. This may lead to depression and anxiety.
Luci’s goal is to change this issue so that cleft affected mature adults receive the support, healthcare and social connection in a way that works for them. She has begun the process locally in her county of residence by speaking to the Commission on Aging and publishing in a local magazine for the older adult. Her enduring process is pursuing state and national organizations regarding her concerns. Creating an advocacy network for the older cleft community worldwide that works for everyone is the goal. More qualitative studies need to be generated. These are questions she thinks about: Are you an older adult with craniofacial/facial difference? Are you feeling alone and isolated, wanting more support and interaction? What would assist you to feel better about yourself and feel connected with others?
Held on February 6, 2025
Presenter: Jasilyn Sitzmann
Medical anxiety is a common experience for patients with cleft, their families, and caregivers, often stemming from the anticipation of procedures, ongoing care, and social challenges. This forum explores how to identify signs of anxiety in patients and introduces practical strategies to address it effectively. Additionally, learners will touch on resources available for mental health care and navigate low-income health insurance. Whether you are a healthcare provider, patient, or family member, learners will leave with a better understanding of the emotional side to medicine.
At the completion of this activity learners will:
- Have a better understanding of the emotional effects caused by medical procedures.
- Be able to recognize and address signs of medical anxiety.
- Apply skills learned to better advocate for themselves, family members, or patients.
