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Nonprofit of the Month: Feeding Matters

Inspired by their newborn triplets’ struggle to eat, Shannon and Bob Goldwater founded the Parent Organized Partnerships Supporting Infants and Children Learning to Eat in 2006. Since then, what is now Feeding Matters has committed itself to uniting the healthcare community with families to improve care for children with pediatric feeding disorder (PFD). Here, Jaclyn Pederson, CEO of Feeding Matters, discusses just how common yet misunderstood PFD is and how you can contribute to the nonprofit’s mission as we head into Pediatric Feeding Disorder Awareness Month in May.

What is the mission of Feeding Matters? Feeding Matters is furthering advances in pediatric feeding disorder (PFD) by accelerating identification, igniting research and promoting collaborative care for children and families. We work towards our vision of a world in which children with pediatric feeding disorder will thrive. Most people do not know what PFD is when I first talk about it, but I can guarantee you know someone with PFD as this childhood disorder afflicts more than one in 37 children under the age of 5 across the United States each year. PFD is when a child has difficulty drinking or eating age-appropriate foods. They may cough, choke, gag or even vomit. This disorder affects all aspects of feeding, including the medical, nutritional, feeding skill and psychosocial aspects. 

What is the greatest reward in being involved with the nonprofit? There are many wonderful things about working for a nonprofit. For me, it’s not only the stories that we hear day in and day out from families and professionals whose lives we are impacting, rather it is knowing that the work we are doing now will make an impact on the generations to come after me. Working on creating a diagnosis for this misunderstood condition and getting it to be recognized means that a family will walk into a pediatrician’s office in 20 years and have an answer. That is not something that was possible in 2006 when Shannon founded this or in 2013 when I joined the team and is something that is inspires me to work harder each day. With the systems work we do, we are impacting millions of children here in Arizona and all over the world. I think that’s really special.

What is the biggest challenge the nonprofit faces? Has the pandemic affected the needs of Feeding Matters? The biggest challenge that we face is that PFD afflicts more than one in 37 children under the age of 5 in the United States each year, yet the disorder is still largely unknown and misunderstood. This affects early identification, research on the issue and general awareness that can help us with resource-sharing and fundraising. The pandemic has affected our families greatly. Not only were there difficulties especially in the early days of the pandemic with the access to specialty foods that many children with PFD need but now that we are starting to see the impact of COVID on children, we are seeing more and more children who have food aversions and need support for pediatric feeding disorder because of their COVID diagnosis.  

Jaclyn Pederson, CEO of Feeding Matters

In the fall, U.S. Centers for Disease Control and Prevention established Pediatric Feeding Disorder diagnosis codes. What does that mean for parents and Feeding Matters? This is the foundation for all of the work we need to do to create a system of care for children with PFD. Creating a stand-alone diagnosis for PFD means validation for families who feel lost and do not know why their child is struggling to eat, and credibility to healthcare professionals who have long been part of a forgotten industry. (Read more at: Feeding Matters Announces Establishment of 2022 ICD-10-CM for Pediatric Feeding Disorder.)

How can readers help? And in what ways do you suggest readers support a loved one who has a child with Pediatric Feeding Disorder? Please like @feedingmatters on all social channels and help spread our message and consider making a donation that is meaningful to you at feedingmatters.org. There is so much work to be done that we could not do it without the support of the community. There are many things to do to support a loved one with a child with PFD. The number one thing I share with individuals is to acknowledge their reality, let them vent to you and you can be there to just listen. So many families experiencing this do so in silence because of fear of judgement or fear of all of the “suggestions” that it can be a total game-changer to come across someone who can just be there with you and listen. If you are hosting a family over with PFD, have the conversation ahead of time. Allow the family to tell you what to expect or ways to support them to be at your house for a meal. They may need specialty food or to bring their own or may even need a table set up in a different room. Also, direct any family to find a wealth of resources on our Family Support page where you can learn more about our Power of Two mentoring program and find our Infant and Child Feeding Questionnaire (ICFQ Screening Tool) or simply request support.

Does the foundation have any events or fundraisers on the horizon? May is PFD Awareness Month, and we encourage everyone to donate in honor of someone they know or just to support the cause. Our annual fundraiser will take place this fall, so please be on the lookout for that and sign up to receive the latest news and information!

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