PFD ALLIANCE STRUCTURE

Feeding Matters’ Pediatric Feeding Disorder (PFD) Alliance unites the field’s advocates, professionals, family members, and community partners to ignite unprecedented change to the system of care through shared-collective decisions, insights, and ideas.

PFD Alliance Norms

  • Operate around the following governance principles: participation, transparency, responsiveness, consensus orientation, equity, inclusiveness, effectiveness, efficiency, accountability, and rules of engagement
  • Be open to all with an interest and who abide by PFD Alliance norms
  • Encourage the ongoing education of members and the deepening of expertise among members
  • Time Commitment: While commitment expectations vary per position, most applicants should plan on meeting at least monthly.

 

While the 2021 Open Call has closed, applications are accepted year-round for future consideration.

Education Pillar

 

improves the educational offerings, resources, and opportunities for all disciplines in the pediatric feeding disorder field

 

Education Pillar Chair: Amy Delaney, PhD, SLP

 

 

Committees

 

Conference Committee
determines the conference agenda topics and speakers; works collaboratively to plan and execute a multi-disciplinary evidence-based conference agenda, ensures that educational opportunities are of the highest caliber for attendees

Committee Chair: Meg Simione, PhD, CCC-SLP
Inclusion Representative/Member: Dr. Isuru Dharmarathna
Scheduling Coordinator/Member: Raquel Garcia, SLP-D, CCC-SLP, CLC, CNT, BCS-S
Members: Gilson Capilouto, SLP, PhD; Jennifer Casteix, MS, CCC-SLP; Ashley Clarke; Dagmar Jurisova; Brandt Perry; Bianca Roe, OTD, OTR/L, RDN, LDN; Marion Russell, OTD, MOTR/L, SCFES; Grace Schumacher, RDN; Kay Toomey, PhD

 

Pre-Conference Committee
responsible for delivering an evidence-based interactive learning event highlighting the family’s voice regarding how PFD is assessed and managed within the PFD community

Committee Co-Chairs: Susan Hodges, OT/L; Cuyler Romeo, MOT, OTR, SCFES, CLC
Inclusion Representative: Paul William Jacinto
Scheduling Coordinator: Justine Turner, MBBS, FRACP, PhD
Members: Elizabeth Barnett; Paula Benzing; Kristina Burnham, MS, CCC-SLP; Mary Beth Feuling, MS, RD, CSP, CD; Laura Loveless, MS, CCC-SLP, BCS-S, CLC; Amber Wright, RN, CPNP, PMHS

 

 

Projects

 

International PFD Conference
Educating and providing collaboration opportunities to individuals around the world.

 

Learning Center
The Learning Center features an open-source database of community workshops and conferences for professionals and families seeking more information on PFD.

 

Advocacy Pillar

 

determines an advocacy agenda and organizes a coalition to enhance services for children with pediatric feeding disorder

 

Advocacy Pillar Chair: Erin Ross, PhD, SLP

 

 

Committees

 

Digital Outreach Committee

responsible for building a digital outreach program designed to guide partners of influence, assess website function, drive website revisions, and guide content creation and digital dissemination

Committee Chair: Emily Adams
Inclusion Representative: Jordan Santos, MS, CCC-SLP
Scheduling Coordinator: Denise Henderson, OTD, OTR/L, BCP
Members: Brianne Best, MSN, RN; Michelle Johnson, CCC-SLP; Anne Elise Nicoladis, MS, CF-SLP; Kelsey Thompson, MS, CCC-SLP; Anais Villaluna, MS, CCC-SLP, BCS-S, CLC

 

 

Projects

 

PFD Consensus Paper
The paper declares pediatric feeding disorder the unifying name and stand-alone diagnosis for the field.

 

EI Benchmark Project
This ongoing project strives to better understand awareness and support of children with PFD in early intervention services. Goals include a survey design and dissemination, establish an EI liaison in each state, and utilization of the ICFQ as a screen tool for PFD.

 

Outreach
Raising awareness and increasing knowledge through workshops and speaking engagements.

Research Pillar

 

develops and contributes to a research blueprint designed to ignite research, optimize funding, and promote evidence based, family-focused, multi-disciplinary care for pediatric feeding disorder

 

Research Pillar Chair: Hayley Estrem, RN, PhD

 

Research Initiatives Task Force

explores patient and family centered research needs within the feeding field with a goal of improving long-term health outcomes through research drives system change

Taskforce Chair: Will Sharp, PhD
Members: Hayley Estrem, RN, PhD; Jaclyn Pederson, MHI; Cuyler Romeo, MOT, OTR/L, SCFES, CLC

 

 

Projects

 

Infant and Child Feeding Questionnaire
Creating partnerships between families and healthcare professionals to help earlier identify pediatric feeding disorder.

 

Partnering in PFD Research
Feeding Matters welcomes the opportunity to collaborate with the pediatric feeding community on research that advances the evaluation and treatment of PFD.

Family Support Pillar

 

equips families with education and advocacy supports to ensure no family feels alone on their PFD journey

 

Family Advisory Council Chair: Brandt Perry

 

 

Projects

 

Power of Two
An international system of support for families that often feel isolated and overwhelmed.

 

PFD Family Guide

The Family Guide to Pediatric Feeding Disorder (PFD) will educate families on PFD, direct them to the next steps to take, and offer helpful tops on how to advocate for their child.

 

Provider Directory
A comprehensive database of feeding centers and healthcare professionals.

 

Resource Library
A comprehensive virtual hub of the latest research, articles, videos, and other resources with valuable information about PFD.