The past few years have brought immense change to our lives, our communities, and the healthcare system at large. PFD also has been transformed. Once only seen as a symptom, PFD now stands alone as a diagnosis and carries a US-ICD-10CM diagnostic code. To build on this forward momentum, in the “2022 Feeding Matters Annual PFD Alliance Symposium: Stepping into a Brighter Future” Feeding Matters PFD Alliance Pillar Leaders will unite to reflect on past achievements while examining tools and resources available for building a brighter future for children with PFD. Each PFD Alliance Pillar, Education, Advocacy, Research and Family Support, will share a key resource used by community members and families to generate awareness of the PFD definition and utilization of the ICD-10 code.
During this interactive live virtual symposium, Feeding Matters signature Community Driven Change question will be launched, and participants will have the opportunity to share challenges and generate ideas through dynamic real-time interaction with other participants, leadership, and families. Additionally, IPFDC registration question results will be shared to inform symposium participants of the most critical actions needed to move the system of care for PFD towards a brighter future.
Participants will be able to:
- Describe the involvement of at least 2 critical stakeholders who contributed to the publication of the PFD consensus definition and the securement of the US-ICD-10-CM codes for PFD.
- Identify 2 opportunities for change in any one of the 4 domains of PFD within their own communities.
- List at least 3 resources available for applying the PFD consensus definition and diagnostic code to practice or their family’s care.
Cuyler Romeo, M.O.T., OTR/L, SCFES, IBCLC
Occupational Therapist and Pediatric Feeding Specialist Cuyler Romeo’s extensive leadership and clinical experience are instrumental in the execution and management of Feeding Matters’ strategic initiatives. In partnership with the CEO, Jaclyn Pederson, Cuyler collaborates with constituents to identify, track, and assess innovative approaches to the PFD system of care. Cuyler also facilitates strategic partnerships with select professional associations including the American Occupational Therapy Association (AOTA). Prior to joining Feeding Matters, Cuyler served as a founding partner of Mealtime Connections, LLC, and gained valuable insight on funding trends and industry implications as the director of clinical innovations at Therapy 2000. She is currently a treating clinician in Banner-University Medical Center’s NICU and works to advance the feeding skill domain by facilitating AOTA’s mealtime Occupations: Feeding, Eating, and Swallowing Community of Practice.
Financial: Cuyler Romeo receives a salary from Feeding Matters and hourly compensation from Banner University Medical Center Tucson.
Nonfinancial: Cuyler Romeo is the lead facilitator for AOTA’s Mealtime Occupation: Feeding, Eating and Swallowing Community of Practice. She serves on the Board of Directors and the Certification Committee for the Institute of Perception-Action Approach. She is a member of AOTA, ArizOTA, and IAPFS.
Amy L. Delaney, Ph.D., CCC-SLP
Dr. Delaney is an Assistant Professor in Speech-Pathology & Audiology at Marquette University. She is the Director of the Neurodevelopmental Feeding and Swallowing Lab focusing on the identification of a norm-reference for feeding development to establish diagnostic criteria and assessment tools for the early and accurate diagnosis of pediatric feeding disorder. Dr. Delaney worked at Children’s Hospital of Wisconsin for 20 years in advanced diagnostics and intervention for medically complex children with PFD and dysphagia.
Financial: Amy Delaney receives a salary from Marquette University.
Nonfinancial: Serves as Educational pillar chair for Feeding Matters. Serves on ASHA’s annual conference planning committee.
Hayley Estrem, PhD, RN
Hayley Estrem, PhD, RN, is an assistant professor in the School of Nursing at University of North Carolina Wilmington. Dr. Estrem’s primary research interests are guided by the NIH Symptom Science model and aim to improve family-centered care for children with PFD and/or developmental disabilities. In her research program, Dr. Estrem combines patient centered outcomes measure development, multi-method integration, and the goal of family-centered care for infants and children with special health care needs. Dr. Estrem’s work started with concept analysis of pediatric feeding problems and measure development and she frequently works with interdisciplinary teams to build evidence that addresses the needs of families and children with PFD. She is the current Research Pillar chair for Feeding Matters and has a child with PFD who inspired her to pursue a career in feeding research.
Financial: I receive a salary from University of North Carolina Wilmington, This study analysis was funded by the Marcus Foundation. Receiving an honorarium from Feeding Matters for the 9th International Pediatric Feeding Disorder Conference.
Non-Financial: I am a founding member of the Feeding Flock research group, I am a Feeding Matters Pillar chair, and I have a child with PFD.
Brandt Perry is a native of Arizona, where he and his wife Krya raise three energetic children – Austin (8), Brayden (6) and Sydney (3). The family's first encounter with Feeding Matters came in 2016 when 18-month-old Brayden was diagnosed with Eosinophilic Esophagitis (EoE) and severe food allergies and the Perrys were searching for information to navigate the new path in front of them. Brayden eats 100% through his G-tube, but that doesn’t slow him down. Brayden's younger sister, Sydney was diagnosed with Food Protein-Induced Enterocolitis Syndrome (FPIES) and numerous food allergies. She also has a G-tube but eats orally as well, which challenges Brandt and Krya to expand their culinary creativity. Fortunately, big brother Austin provides great support to the whole family and simplifies meals by preferring mac & cheese or pizza.
Brandt began serving on Feeding Matters Family Advisory Council began in 2018 and as a Power of Two Coach in 2019. Outside of his involvement with Feeding Matters, Brandt’s philanthropic involvement includes serving Habitat for Humanity, Scottsdale Active 20-30 Club and Phoenix Children’s Hospital Leadership Circle. These actions are driven by Brandt’s belief that we have a responsibly to give back, to leave the world better than we found it.
Brandt earned a Bachelor of Science degree in Accounting from Arizona State University (ASU) and a Master of Business Administration degree from The University of Arizona (UofA), which ensures he always has a winning team in the annual ASU - UofA Territorial Cup football game. Brandt’s current professional endeavors focus on developing markets and implementing healthcare imaging solutions around the globe as Vice President of Global Distribution for Orthoscan Inc.
Krya and Brandt love outdoor adventures and strive to inspire that same wonder and appreciation of nature in Austin, Brayden and Sydney. The Perry family, and Coco their Great Dane, seizes every opportunity to go camping, hiking, biking, rock climbing, kayaking and exploring.
Financial Disclosures: None
Non-Financial Disclosures: Brandt Perry serves as the Family Advisory Council Chair on the Feeding Matters Family Advisory Council; PFDA Support Pillar Lead; volunteer with Feeding Matters. Brandt is a parent of a child with PFD.
Paula Rabaey, PhD, OTR/L
Paula Rabaey, Ph.D., is Associate Professor of Occupational Therapy at St. Catherine University in St. Paul, MN. She has 25+ years clinical experience in pediatric occupational therapy including early intervention and feeding, eating, and swallowing. She is a feeding technical expert for SPOON Foundation and has developed a curriculum to train caregivers in orphanages around the world to safely feed children with disabilities. She presented on pediatric feeding and assessment strategies in Tula, Russia in May 2019 and at the 2nd Annual OT conference in Morocco January 2020. Her dissertation focused on the meaning of mealtime for African American mothers and their young children living in under-resourced areas which was presented at the World Federation of Occupational Therapy Conference in South Africa in 2018.
Financial Disclosures: Associate Professor at St. Catherine University where she receives a salary.
Non-financial Disclosures: Serves as a member of AOTA, WFOT, and SSO-USA.
Erin Sundseth Ross, PhD, CCC-SLP
Dr. Erin Ross received her Ph.D from the University of Colorado in 2007, followed by a 2-year Post-Doctoral Fellowship in the Section of Nutrition at the University of Colorado Denver. Her Master’s Degree is in Speech and Language Pathology, from California State University Stanislaus, which she received in 1988. Dr. Ross is currently an assistant clinical professor in the Department of Pediatrics, School of Medicine, University of Colorado and is on faculty at the Rocky Mountain University of Health Professions. She has authored several book chapters and publications related to feeding preterm infants, infants with medical comorbidities, and children with pediatric feeding disorder (PFD). Dr. Ross provides clinical consultation to several NICUs within the HealthONE system in Denver, in addition to providing professional education and research consultation through Feeding Fundamentals. She created SOFFI®, a training program for caregivers in the NICU and in Early Intervention.
Financial Disclosures: Consultant for Gerber Foods and for Intertek; speaker for Toomey & Associates, and I receive a salary from Feeding Fundamentals, LLC. My presentation will not be used to sell a product or service.
Non-Financial Disclosures: Chair of Advocacy Committee, Feeding Matters.