The “2021 Feeding Matters Annual PFD Alliance Symposium: Changing the Future of PFD” is an opportunity for our feeding community to virtually connect and collaborate as we enter a new era of PFD advocacy. Feeding Matters PFD Alliance Pillar Leaders will lead participants as they describe the impact of 2020’s key initiatives and set the stage for a generative discussion on how best to change the system of care for children and families impacted by PFD.
PFD will be defined through case study analysis to clearly depict areas of needed improvement in the system of care. Participants will have the opportunity to share their own communities needs while results from the 2021 Community Driven Change Question and Pre-Con are shared for additional brainstorming insight. Newly authored PFD resources will be shared and application ideas will be gathered. Participants will conclude the presentation with idea mapping to ensure resources are utilized to progress the system of care for PFD.
Learning Objectives:By the end of this session, attendees will be able to:
- Define PFD and describe the impact a defined diagnosis may have on the system of care
- Analyze advocacy actions and describe PFD needs related to their own community
- Actuate at least 2 new resources when advocating for PFD services
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 LLC; Receives a consulting fee from Nestec and Intertek; Receives a speaking fee and has intellectual property rights from Toomey & Associates, Inc.
Nonfinancial Disclosures: Serves as the advocacy pillar chair for Feeding Matters
Hayley Estrem, PhD, RN
A registered nurse since 2002, Dr. Hayley Estrem’s primary research interests are to improve family-centered care for children with feeding problems and/or developmental disabilities. Estrem earned her MSN-NE from Duke University in 2009 and her PhD in 2015 from UNC-Chapel Hill. Her research interests combine measure development, multi-method integration, and family-centered care for infants and children with special health care needs. Her dissertation consisted of three studies: the concept of feeding problems as available in the literature, how parents perceive the concept of feeding problems and a description of how families manage caring for children pediatric feeding disorder.
Since 2009, Estrem been a member of the Feeding Flock, an interdisciplinary research team with a mission to partner with families to nurture young children with feeding difficulties. With the Feeding Flock team, she develops psychometrically sound measures. These measures are essential building blocks for a foundation of evidence-based and patient and family-centered care for children with pediatric feeding disorder.
Financial Disclosures: Receives a salary from University of North Carolina Wilmington
Nonfinancial Disclosures: Serves as the research pillar chair for Feeding Matters; founding member of The Feeding Flock research team
Amy 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 pediatric dysphagia in medically complex children.
Financial Disclosures: Receives a salary from Marquette University; Received a speaking fee from Happy Family Organics
Nonfinancial Disclosures: Serves as the education pillar chair for Feeding Matters; Member of ASHA; Serves on the annual conference planning committee for ASHA
Cuyler Romeo, M.O.T., OTR, SCFES, CLC
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 Disclosures: Receives a salary from Banner University Medical Center Tucson and Feeding Matters
Nonfinancial Disclosures: Serves as a member of AOTA, ArizOTA, IAPFS and IPAA
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: Nothing to disclosure
Nonfinancial Disclosures: Chair of the Family Advisory Council; PFDA Support Pillar Lead; and volunteer with Feeding Matters