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

Speakers

  • Cuyler Romeo

    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.

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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.

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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 forS POON Foundation and has developed a curriculum to train caregivers in orphanages around the world to safely feed children with disabilities.

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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.

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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.

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