PFD Alliance Information

Published by Cuyler Romeo on Feb 27, 2020

The PFD Alliance is an open access community of professionals, families and community partners driven to further advances in PFD by accelerating identification, igniting research, and promoting collaborative care. PFD Alliance at-large members receive PFD Alliance quarterly updates and are invited to participate in Digital Ideations, Symposiums and Town Halls to contribute input for future Alliance actions. Members also may join committees, serve as leadership, complete volunteer projects or give time as they are able through several levels of participation. Alliance participation levels include:

  • The Executive Council: Members who serve in positions of leadership which include: Family Advisory Chair, Medical Director, Pillar Chairs, and Committee Leads
  • Pillar Committee Members: Members who serve on the active committees of the Alliance
  • Volunteers: Alliance members who engage in specific volunteer actions such as completing special projects or executing events.
  • At-Large Members: These members are engaged in the Alliance through communication, surveys, and invitations to our twice-yearly virtual meetings.
To ensure all aspects of care are addressed, we have organized efforts to fall under one of the four pillars within the PFD Alliance: Education, Research, Advocacy, and Support.  Although each pillar focuses on a specific area, the goals of each are aligned.

EDUCATION PILLAR

Build a workforce of qualified professionals to evaluate and treat pediatric feeding disorder. We will do this by impacting education that will result in better care, improved health outcomes and enhanced early intervention.

  • Conference Committee
    • The conference committee works to determine an evidence-based conference agenda along with a featured lightning talk. During the year, the committee works to ensure that the planning of the conference goes well and educational opportunities are of the highest caliber for attendees
  • PFD Educational Initiatives Committee
    • The PFD Educational Initiatives committee works to understand the educational needs of our feeding community while considering provider and client needs. The Educational Initiative committee strives to develop a professional network for information dissemination while advancing the community’s understanding of PFD across the four domains.
  • Resources Committee
    • The resources committee works to determine what partnerships need to be built with existing groups to provide more information around pediatric feeding disorder and how Feeding Matters can be the conduit of information. The committee also works to maintain the usability of our website as we investigate areas of improvement.
ADVOCACY PILLAR

Grow a network of advocates, including respected clinicians, researchers, caregivers, educators, healthcare professionals, insurance providers and more to influence public policy and facilitate change to improve the lives of children with pediatric feeding disorder.

  • PFD Identity:
    • Partner with associations and other organizations to support the approval of the ICD
RESEARCH PILLAR

Ignite research to define evidence-based best practices that will lead to better care for infants and children with pediatric feeding disorder.

  • Small Grants Committee
    • The small grants committee assesses research needs, reviews applications, and grants dollars to researchers interested in moving the field of pediatric feeding disorder forward.
  • ICFQ Research Project
    • Research the ICFQ to determine if it can be a psychometrically sound screening tool for early identification
SUPPORT PILLAR

Empower families so that they are educated on PFD, equipped with resources, supported to advocate for their child, and to ensure their family receives the best care possible.

  • Family Advisory Council
    • The Family Advisory Council (FAC) advises Feeding Matters and the PFD Alliance on how to more effectively meet the needs of families navigating pediatric feeding disorder (PFD) – providing feedback on proposed policy, programs, initiatives, and strategic planning. FAC members have a wide variety of experiences with pediatric feeding disorder and represent the diversity of families impacted by PFD.
  • Power of Two parent coaching
    • Qualified family coaches who have first-hand experience with PFD are matched with families struggling to overcome the medical, emotional, financial, educational, and social issues often faced with PFD. Through shared experiences, Power of Two family coaches offer emotional support, compassion, resources, and guidance – reminding caregivers that they are not alone.
PFD Alliance Leadership, Committee members, and volunteers often participate in monthly calls, as well as leadership or committee specific actions which may include additional monthly meetings, Pillar Town Halls, Digital Ideation and Symposium participation. Most volunteer and leadership commitments require approximately 3-5 hours per month.