The Feeding Matters Annual PFD Alliance Symposium: The Power of Advocacy

April 14, 2023 9:00 am

Presentation Summary

What is advocacy? What is the best method of advocating for change in a complex healthcare system? As an expert in system advocacy, Feeding Matters and the PFD Alliance Pillar Leaders will unite to bring your voice to the advocacy table. Together we will dive into the Feeding Matters’ Advocacy Agenda and explore options and choices for next steps in advancing the system of care for children with pediatric feeding disorder. Each PFD Alliance Pillar, Education, Advocacy, Research and Family Support, will share a key lesson from the advocacy playbook enabling community members to leave ready to speak for anyone in the PFD community who needs their voice elevated.

During this unique live event participants will have the opportunity to share challenges and generate ideas through dynamic real-time interaction with other participants, leadership, and families. Participants will leave armed with new ideas and renewed motivation to move the system of care for PFD towards a brighter future.

Learning Objectives

  1. Define advocacy and identify at least 2 methods for identifying key advocacy needs within a community
  2. Identify 2 opportunities for change in any one of the 4 domains of PFD within their own communities
  3. List at least 3 resources to leverage for system wide change in pediatric feeding disorder


  • Cuyler Romeo

    Cuyler Romeo MOT, OTR/L, SCFES, IBCLC

    Cuyler Romeo has developed a broad clinical understanding of the needs of families and children by serving as an Occupational Therapist and industry expert in pediatric feeding disorder for over 20 years. As the Director of Strategic Initiatives at Feeding Matters, she assists in developing and executing a strategic plan to bring about system wide change for families struggling with pediatric feeding disorder. She utilizes her clinical understanding and leadership expertise to collaborate with constituents in identifying, tracking, and assessing innovative solutions to system problems. Cuyler also has extensive experience facilitating strategic partnerships and aligning diverse groups of people under a common goal. She designed and executed a state-wide multi-disciplinary mentorship program, launched a Community of Practice within the American Occupational Therapy Association (AOTA) and advanced professional development through her position on AOTA’s Commission on Continuing Competence and Professional Development (CCCPD). Prior to joining Feeding Matters, she served as a founding partner of a feeding specialty clinic, Mealtime Connections, and rectified system issues on a broader scale as the Director of Clinical Innovation at Therapy 2000. She also treats clinically as a feeding specialist at Banner University Medical Center-Tucson in a Level 3 NICU and speaks professionally.

    Financial Disclosures: Receives a salary from Feeding Matters. Receives hourly compensation from Banner University Medical Center Tucson.

    Non-financial Disclosures: Cuyler Romeo facilitates AOTA’s Mealtime Occupation: Feeding, Eating and Swallowing Community of Practice and is an appointed member of the Commission for Continued Competence and Professional Development (CCCPD). She serves on the Board of Directors for the Institute of Perception-Action Approach and is a member of the National Perinatal Association’s Interdisciplinary Workgroup and Dissemination Committee. She is a member of AOTA, ArizOTA, and IAPFS.

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  • Amy Delaney

    Amy Delaney PhD, 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. She is the Education Pillar Chair for Feeding Matters.

    Financial Disclosures: Receives a salary from Marquette University.

    Non-financial Disclosures: Serves as Educational pillar chair for Feeding Matters. Serves on ASHA’s annual conference planning committee.

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  • Paula Pabaey

    Paula Rabaey PhD, OTR/L

    Paula Rabaey, Ph.D., MPH, OTR/L is Associate Professor of Occupational Therapy at St. Catherine University in St. Paul, MN. She has 30 years clinical experience in pediatric occupational therapy including early intervention, outpatient, home health, feeding, eating, and swallowing, and NICU. Dr. Rabaey’s research and scholarship focuses on children with and without disabilities living in marginalized communities both in the US and abroad with a focus on feeding and mealtimes. Her current project is looking at feeding assessments used by practitioners and the alignment with the PFD diagnosis. 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.

    Financial Disclosures: Receives a salary from St. Catherine University.
    Non-financial Disclosures: Serves as a member of AOTA, WFOT, and SSO-USA.

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  • Erin Ross

    Erin 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 Stansilaus, 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: Receives a salary from Feeding FUNdamentals. Is a speaker for Toomey & Associates. Is a consultant for Gerber Foods and Intertek.
    Non-financial Disclosures: Chair of the Advocacy Committee with Feeding Matters.

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  • Amber Mieras (Family Advisory Committee Chair)

    Amber Mieras is the mother of Jax, 8, and Nayeli, 4. Amber connected with Feeding Matters when Jax was an infant and she was looking for information about feeding challenges. She found a wealth of support and knowledge about feeding tubes, therapies, and connections with other families that impacted her entire family. Over the last 7 years, Amber has continued to utilize the Feeding Matters resources and support, serving as the chair on the Family Advisory Council, as a mentor with the Power of Two program, as well as presenting at the 2021 PFD Conference. Amber was an elementary school teacher, mentor, and professional development facilitator for over 16 years serving the Phoenix area as well as a small community outside of Boston. In her spare time, she loves running and hiking, cheering on her alma-mater Arizona State University Sun Devils, and her beloved Red Sox. She loves spending time with her family, watching movies, and being outdoors.

    Financial Disclosures: None.
    Non-financial Disclosures: Chair of the Family Advisory Council; PFDA Support Pillar Lead; and volunteer with Feeding Matters. Amber is a parent of a child with PFD.

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