Category: Uncategorized

Dear Friends of Feeding Matters,

I am so pleased to be back after a wonderful (and messy and loud!) maternity leave. I return ready to fiercely advocate for children with PFD, their families, and the professionals who treat them.

A lesson that has helped me recently in coming back after maternity leave is finding power in the pause. Much of what I do here at Feeding Matters involves thinking, setting strategy, and empowering the team. We have goals that will take 15 years to accomplish and some that will take three months. It can be easy to get pulled into one of the many areas of the PFD system of care that need attention and admittedly, it is sometimes hard not to react. But I’m learning there is power in pause and power in reflection. This space allows me and the Feeding Matters team to stay focused on strategy and the areas that will make the largest impact.

With this focus on our strategy, I have a few general aims that I hope to achieve for Feeding Matters and our internal team:

• Trauma Informed, Healing Organization: While I do believe most of our programs are trauma-informed, we are never done learning and need to be constantly evolving and growing. I want to ensure that we are trauma informed in all of our programming and continue to grow as a healing organization aware of trauma and its impact to an individual and a system.
• More Content: We are working to bring you more educational and awareness content that supports the needs of parents, professionals, and caregivers. This includes webinars, blogs, articles, and more.
• A Greater Movement for PFD: As we continue to build awareness for pediatric feeding disorder, we are creating a movement to ensure children are identified early and have access to the support and treatment that they need. This year, that movement will get even stronger. To start, we will have the biggest PFD Awareness Month (May) yet!
• A united community: Often, Feeding Matters has served as a neutral place for all perspectives to exist and ideas to be shared and discussed. We aim to continue this effort and take great pride in this responsibility. But as the world of feeding continues to get more complex, this task becomes even more difficult. That is why we remain dedicated to listening to our community, working toward consensus, advancing research, and innovation in an ever-evolving field.

For myself, and what I hope to bring to my team, is to continue working on living and breathing our values daily. Our team values are collaboration, innovation, and inclusion. We work to grow each day as leaders serving our community so that we can achieve our vision of creating a world where children with PFD will thrive. To do this, we will ensure we always make time for and find power in the pause.

Happy to be back,
Jaclyn

Jaclyn Pederson, MHI
Feeding Matters CEO

Happy New Year! This month we bring you a message from Feeding Matters‘ Volunteer Medical Director, Richard J. Noel, MD, PhD. 

As we begin 2023 and continue to establish some normalcy after a challenging couple of years, I would like to reflect on a question that I am asked now and then: “Why, in your limited free time, do you choose to work with Feeding Matters?”

The simple answer is that it is the right thing to do. While it sounds like a too-simple, flippant response, I have sound reasoning with which I form this opinion.

To begin with, this is one of the few organizations I know that is one hundred percent about children with a chronic condition. While Feeding Matters addresses the needs of families and providers, they only do so because it aligns with the needs of children with pediatric feeding disorder (PFD). You would think that this was typical for the healthcare advocacy world, but it is not. Organizations sometimes simply work to aggrandize themselves or its members who use the group as a platform for advancing their own career or business. Like many individuals I know, I can assure you that I have not been paid by Feeding Matters for what I’ve done, nor have I been recognized or rewarded by my institution in any manner for work I have done with the organization. I do it because it’s the right way to care for children with PFD.

Another reason is that, Feeding Matters is at its core still the founder Shannon and other mothers who traveled the country seeking needed healthcare solutions that were not easily emerging. Where others may have been dissuaded, these parents were able to capture the attention and respect of the healthcare system that was failing their children and created one of the best examples of consensus and synergy many will ever see. I only know of a couple of other advocacy organizations that have established such an objective body of work; Feeding Matters’ achievements easily surpass what many similar groups would dream to achieve. Simply put, it is highly unlikely that the multidisciplinary conferences (in-person and online), PFD consensus publication, or the ICD codes would have ever happened without Feeding Matters and its tenacious founders.

Lastly is the inclusiveness the organization has strived to develop throughout its history. The membership draws openly across different disciplines and has attracted individuals from academic and private practice backgrounds, alike. They also involve those who have developed their own perspective on PFD via research, published materials, educational seminars, patented methodologies, family advocacy, and social media influence. Feeding Matters will always be a neutral ground where diverse ideas can be openly discussed and vetted on their own merits as they pertain to improving the lives of children and their families, we all work for.

In sum, I am very proud to have been a part of this organization. With everybody’s time being a limited commodity, I see Feeding Matters as a worthy investment of time and effort for myself, and I hope more and more people will too. I would urge all to continue doing the right thing and in your own way help Feeding Matters support our children with PFD well into the foreseeable future.

This year, Feeding Matters is celebrating its 15 year anniversary! As part of our celebration, we gathered our top 15 accomplishments in the past 15 years.

1. Created the Infant and Child Feeding Questionnaire (ICFQ) to earlier identify children with PFD.


2. Formalized the Power of Two Program, where there have been 3,255 counted family mentoring matches +resource calls and emails made to date.


3. Contributed support to the current research data has been published in the Journal of Gastroenterology, Nutrition and Hepatology and the Journal of Pediatrics.


4. Created the vision for PFD and facilitating the consensus meeting that led to the January 2019 publication of the groundbreaking consensus paper “Pediatric Feeding Disorder (PFD)—Consensus Definition and Conceptual Framework” in the Journal of Pediatric Gastroenterology and Nutrition. This publication earned the “highest cited” award as it is in the top 1% of articles cited for journals of a similar age.


5. Championed a research paper that determined the prevalence of PFD, which shows more than 1 in 37 children under the age of five are at risk each year in the United States. PFD is more prevalent than Autism and Cerebral Palsy.


6. Advocated for and secured the establishment of ICD Codes for Pediatric Feeding Disorder in the US-ICD-10 medical handbook which has opened significant opportunities to improve the system of care including insurance reimbursement, tracking prevalence data, and allocating much-needed research dollars.


7. On Oct 1, 2021, pediatric feeding disorder was officially included the US diagnostic manual. And on that day, we had our first official diagnosis of PFD.


8. Created PFD Resources for families and healthcare professionals and raising Feeding Matters to be the go-to resource on feeding.


9. Since it was first held in 2008, The International PFD conference has served 4,177 individuals and had 42 countries in attendance; including attendees from the healthcare field, physicians, families and community members.


10. Achieved special designation for Pediatric Feeding Disorder Awareness Month to highlight the medical, emotional, financial, educational and social struggles that families navigating the broad spectrum of pediatric feeding disorder (PFD) face.


11. Since 2013, the Annual Community Event has raised more than $1.8 million to support invaluable education, advocacy, research and family support initiatives.


12. In 15 years- 392,903 Individuals have been served and 1,123,016 individuals have been reached.


13. In 15 years, 159 countries have accessed the Infant & Child Feeding Questionnaire.


14. Since it launched in 2020, 6,767 individuals have accessed the Family Guide and since it launched in 2021, there have been 9,630 unique PFD ICD tool kit views.


15. To date there have been 3.5 million page views at feedingmatters.org.

Dear Friends of Feeding Matters,

My name is Garrett Barnes and I’m a father to three amazing girls, including Lucy who has pediatric feeding disorder (PFD). I am also an ardent supporter of Feeding Matters and fierce advocate for PFD. Jaclyn asked me to guest write a letter to all of you while she is out on maternity leave. With it being November, I wanted to start by talking about gratitude. I am amazed and grateful for the work that has been accomplished to advance the field for PFD and better support families. 8 years ago, we were without hope. Lucy was vomiting daily, without any oral intake, and we could not see any light or end to it.

One evening, I found Feeding Matters online and placed a call that changed everything. Immediately, we found support and a partner in our journey. This one moment changed our whole family’s journey, but most importantly gave us hope to keep fighting.

Fast forward to one year ago today when we successfully removed Lucy’s G-Tube. Lucy was eating enough to not need it any longer. She is healthy and happy and now, healthy and happy without her tube. She plays goalie for competition soccer, is mastering piano, and being a big sister to Alice and Ivy, or according to her… “my 8 year old twins”.

It takes a village, and we are in gratitude for Feeding Matters and the hope, encouragement, and support we received. It was a tough journey, and without that support, we do not know how we could have done it. As you sit down with your family to eat this holiday season remember all the children who can’t and all the families struggling to find hope in their feeding journey.

For families just beginning on the long journey of PFD, please know that support is out there. Because of the generous donors and community supporters, Feeding Matters can help.

Every child is unique and different. Feeding Matters understands this, and through the Power of Two program can pair you with a mentor that is best suited for you.

We are grateful for the staff and Goldwater family. Their commitment to assure PFD is understood, supported, and recognized. We are excited for the future and are in deep appreciation. Life has done a complete turn for us, as Lucy is able to enjoy an oral meal every day with us as a family at the table. If you would like to see her journey, feel free to watch Feeding Matter’s Lucy update video by clicking here.

Whether you are a donor, community supporter, family, or professional. I thank you on behalf of all parents just like me.

In gratitude,
Garrett Barnes

Feeding Matters is grateful to Jaburg & Wilk for their sponsorship of the 2022 Virtual Community Event! Learn more about why Jaburg & Wilk supports Feeding Matters.

The Jaburg & Wilk Foundation began supporting Feeding Matters in 2008. We were surprised by the number of children that were impacted by pediatric feeding disorder (PFD), especially children that were on the autism spectrum. The stories that we heard about long-term and on-going PFD struggles that both parents and children faced were heart-breaking as well as the developmental delays that these children faced. We have followed the growth of Feeding Matters from being primarily an outreach support network for parents to an international organization focusing on education, advocacy, treatment, and research. It has been an incredible journey. While we focus on Feeding Matter’s Arizona efforts, we are encouraged by the continuing partnership of SARRC and Feeding Matters. As with autism, the earlier the diagnosis of PFD, the better the potential outcomes can be.

The awareness of PFD at Jaburg Wilk has empowered us to connect our employees and clients, quickly, with Feeding Matters if there is a problem or potential PFD problem. That awareness has encouraged parents of preemies or multiples to watch closely for signs of feeding challenges. The quick response from Feeding Matters has been gratifying and part of the reason for our continuing support of Feeding Matters.

Back to school season – a time of change, stress, anxiety, excitement, and so much more. I’m a mom to an almost three-year-old son with another son on the way and for our family, this back-to-school season brought its own unique challenges. We switched up routines. We had big emotions. We stepped outside our comfort zones. We said goodbye to the familiar without being sure of the next step. We got to know new people and places. And it was tough.

We also lost sight of the grace that we needed to give ourselves during this time of change. I know there are others out there struggling with the same stressors so I thought I would share a few things that have helped my family and the Feeding Matters team during this season.

1. Acknowledging our reality. Change is tough and that is ok!
2. Not trying to force anything too hard, giving ourselves breaks and the space to adjust made a huge difference.
3. Knowing that “success” for us may look different than we originally expected.

This grace made all the difference in the world, and it also stood as a great reminder of everything we are asking of children with pediatric feeding disorder (PFD). Having PFD is a long journey with various seasons of change and with it comes many emotions. And especially now, at the start of a school year, our kiddos with PFD may be faced with additional stress as feeding routines change.  In many classrooms, there is a child who is struggling with this whether their PFD has been diagnosed or not. So during this back-to-school time of change, I encourage you to give yourself some grace and be thinking about others who need it as well.

Best,

Jaclyn Pederson, MHI
Chief Executive Officer

At the 2022 Feeding Matters Annual PFD Alliance Symposium: Stepping into a Brighter Future, a session of the 9^th Annual International Pediatric Feeding Disorder Conference, Feeding Matters PFD Alliance Pillar Leaders reflected on past achievements while examining tools and resources available for building a brighter future for children with PFD. Please enjoy this series of Question-and-Answers from our Pillar Chairs.

Now that we have a general PFD Toolkit, how else could we leverage this content? If we create a stakeholder specific toolkit, who should we target and how do you see this content being shared?
Access to meaningful information regarding PFD is a key initiative for Feeding Matters. Our goal is to continue providing free resources to the PFD community that promotes awareness, identification, and intervention strategies for both families and providers. Like the PFD name and diagnostic criteria, broad dissemination of this material can help to create a common language about PFD for improved care.

To grow awareness within our PFD community, we need to leverage our current content and develop new content. Our first action is to share links, handouts, and other resources, to our team members and to the families we serve, to encourage consistent messaging. Remember to share links to the FM website, PFD Toolkit and PFD Alliance app! Spreading the word to our larger medical and intervention communities can help identify red flags in children who have not been identified! Next, we can add new content. Is there a new toolkit you would like to see? Are there specific diagnoses or topics that you find yourself explaining repeatedly to other providers or families? Are there teaching materials that would assist you in explaining PFD and intervention to others? What about a child-friendly version of the Toolkit for for siblings or other family members of children with PFD?

Finally, we need to grow awareness outside our PFD community to families not yet identified with PFD. Most caregivers are unaware that children shouldn’t struggle when learning to eat, yet they are the first people to recognize a feeding problem in a child. To decide when their child is struggling more than expected, caregivers ask other caregivers and search the web and social media. All of this occurs before they talk with their primary care provider! Getting information about PFD out to where caregivers search for meaningful information about typical feeding could have a huge impact on awareness and early referral and identification! Do we need a specific toolkit aimed at caregivers without a child with PFD? What should be included? What other ideas do you have?

We would love to hear from you! Please share your feedback by emailing programs@feedingmatters.org so we can work together to make PFD a household name!

Amy L. Delaney, PhD, CCC-SLP, Education Pillar Chair

Feeding Matters has made excellent progress in bringing together a community of diverse stakeholders. As Family Support Pillar Chair, who else needs a seat at the collaboration table? What is a good first step in this outreach campaign?
Feeding Matters takes a unique approach to caring for children with PFD, incorporating the family voice and the healthcare professional voice. I can personally attest, through years of working with healthcare providers and caring for my two children with PFD, that having both voices present has been essential for an achievable and impactful plan of care for my kids, and our entire family. There are two additional voices I believe would add significant value at the Collaboration Table.

First, are Elected Representatives at the local, state, and federal levels. Bringing these people to the Collaboration Table will broaden awareness of PFD. Once our Elected Representatives are aware, they can help drive awareness through enacting and supporting activities such as PFD Awareness Month. Additionally, Elected Representatives can enact legislation, and drive related efforts, that support care for children with PFD. An example of this is where the State of Arizona passed laws requiring insurance companies to cover elemental formulas for certain medical situations.

Second, are School Healthcare Staff. This could include, but not be limited to, nurses, councilors, physiologist, Occupational Therapists, and 504 Plan / IEP Plan coordinators. Adding School Healthcare Staff to the Collaboration Table will help them better understand and support the unique needs of the growing number of kids with PFD. School Healthcare Staffs’ feedback at the Collaboration Table would also help families and healthcare professional understand the situations that occur in a school setting, which may not fully be understood because many of us are not in that school setting.

A first step to involving both groups could be creation of a short, couple minute video explaining PFD, sharing a real story or two from families struggling with PFD, and providing recipients next steps to take in support of children with PFD. This should be sent directly to targeted representatives and school healthcare providers in addition to share via social media to these groups.

Brandt Perry, Family Advisory Council Chair

What can professionals and families do to advocate and increase awareness of PFD in their communities? How can families and providers come together in their efforts?
I am the mother of three adult children (and proud grandmother to two grandchildren.) One of my children had/has special needs (he just turned 30!), and I partnered with many special education teams over the years. I was honored to have worked for 6 years on the Colorado Special Education Advisory Committee. I think my passion for advocacy began when I realized families were not always valued in this process. Of course, this was decades ago – and I do see some improvements. I have been a part of Feeding Matters since the first meeting and have watched it develop into this amazing organization. An organization that continues to bring families and professionals together to improve services for children with PFD.

Families bring the most powerful voices to advocacy, and parents and professionals can partner to raise awareness of PFD. Feeding Matters is working to get a PFD Awareness month in every state and territory. We have a resource on our website (https://www.feedingmatters.org/awareness/) that explains the process for getting PFD awareness month recognized in your state. Professionals can ask families to add their voice to any effort and lead the way towards establishing this month. Alternatively, parents can bring this resource to their feeding team to partner with professionals.

We are still working to raise awareness in support of children with PFD, and their families. Another way families can influence this effort is to share their story – with your representatives in government, with your team, and with Feeding Matters.  Click here to submit your story!

We have a powerful voice – a choir – when we raise it together. The keynote speaker of this year’s International PFD Conference (Dr Scott Berns) was not only inspiring, but he also gave us a roadmap for how to move our mission forward. One thing that I took away from his talk is that it takes all of us. And people we may not even think of. Parents, Professionals, Children (yes – our older children can be powerful advocates!) – we may be the core. But we also need to consider how to partner with other organizations who serve children with special health care needs. We need to collaborate with industry (we had a wonderful talk this year of a partnership between Gerber and a University, looking at texture sensitivities in children with Trisomy 21) and insurance companies. We need to partner with government representatives. You may not feel you have a voice by yourself but think of all the people you know. In all these different areas. Together, we can raise awareness of PFD in the communities where we live. And Feeding Matters is here to help – with resources and to make connections. Remember to download the app!

Erin Ross, PHD, CCC-SLP, Advocacy Pillar Chair

How can providers and families find ways to participate in research? Where is the best place for a person unfamiliar with research start?
Greetings from the Research Pillar! Great questions. I encourage anyone interested in PFD research first download the PFD Alliance App. The App has groups connecting people with aligned interests, such as family support, research, and a shared group where professionals and families share space. Join the Research Projects Group. There you will find PFD Alliance members looking for connections in research, whether it is current studies looking for participants, clinicians/providers or researchers networking with one another, or families suggesting research topics.

I would also check out your local universities to see if they have Occupational Therapy, Speech Language Pathology, or Nutrition programs. You can look at faculty profiles to see what their interest areas are. I have often had clinicians reach out to me at St. Catherine University looking for a faculty to partner with in a study. This is also a good resource for families if you would like to find the full article for a research study.

There also are many organizations with research registries or who may provide open access to published studies. Here are a few: Oley Foundation , SPARK, FARE.

Researchers often recruit for studies using Research Match. It would be fantastic if individuals with PFD were represented in that database as well. Additionally, if you participate in research for any reason, please advocate for utilization and tracking of PFD as a diagnosis, as well as ARFID where it applies.

If you are new to research, searching the internet can be extremely overwhelming. One tip is to make sure the websites or organizations have a .org, .gov, .edu or other reputable web address. For example, the American Speech, Language, and Hearing Association (www.asha.org) and the American Occupational Therapy Association (www.aota.org) are good options for resources on how to integrate research into your area of practice.

Paula Rabaey, PHD, OTR/L, Research Pillar Chair Elect and Hayley Estrem, PhD, RN, Research Pillar Chair

Dear friends of Feeding Matters,

As you may know, we have been celebrating Pediatric Feeding Disorder (PFD) Awareness Month since May 1. In its 4th year, this month has become a huge celebration within the Feeding Matters team and community. We recognize and honor the progress we’ve made since our founding 15 years ago. But we know that there’s much more to do and this month, we ask for your help to raise awareness and reach more families in-need. 

Time and time again when a family finds our resources and community of support they breathe a sigh of relief. Relief to know that there are others out there struggling like they are, that they are not alone. Relief that they do not have to hide behind closed doors anymore. When a child is struggling with feeding, it can be very difficult for a family to talk about those struggles for fear of shame or judgement. Or, as we see in many cases, families are met with opinions from others on “how” to get children to eat, implying that a family isn’t already doing everything in their power to nourish their children.  This is one of the reasons why awareness of PFD is so important. Awareness is a means to inclusion. If enough people know what PFD is, we can begin to change the public perception when a child is on a feeding tube, needs feeding therapy, or is a “picky eater.”

You have a very important role this month in helping changing the lives of children with PFD. How many followers do you have on social media? If sharing PFD Awareness Month with your audience could help just one family find the care and support they need, wouldn’t it be worth it? It takes all of us within this community to #callitPFD and help families feel welcome, and breathe a sigh of relief. 

Thank you for helping us raise awareness of pediatric feeding disorder this month!

Sincerely,

Jaclyn Pederson, MHI
CEO

Did you know May is PFD Awareness Month and Maternal Mental Health Awareness Month? At Feeding Matters, we are getting ready to raise awareness for these two issues we are passionate about! In recognition of the toll PFD can take on families, we bring you a message from the mother of a child with PFD.

As I sit here next to my beautiful child with pediatric feeding disorder (PFD) the psychological damage caused from going on this journey with him sits next to me. I know it will always be with me. It is the reason I will never try to have any more children. But how do I make it bearable to sit by? How do I accept it without letting it cause me more harm? Maternal mental health is at the forefront of this question. Finally starting to share my experiences has helped me. What helps you? If you don’t know, reach out. Whether it’s PFD or not, all mothers struggle with something. Don’t struggle alone. Whisper, or scream if you have to, but get it out. Don’t let the fear, anxiety, or depression chisel away at the beauty that is you, mommy.

My best friend Jenna says it best, “Seeking support is a sign of strength. Our children need us, we need us too. Sometimes it feels like one more thing in a long list of things we have to do.” But do it we must. We will be healthy again, maybe not today, but one day. Don’t be ashamed of your struggles or perceived inabilities. Motherhood is all about learning. Who is your teacher? Look around you, help is closer than you think. So, for now, I say goodnight to the damage sitting next to me. I’m hopeful when I wake up it won’t be sitting as close. And maybe, one day, she will walk out of the door for good.

1 in 8 mothers experience symptoms of maternal depression (NICHQ, 2021). 1 in 37 children have pediatric feeding disorder. Your feeding experience with your child may be affecting your maternal mental health. Attend the IPFDC to share experiences and learn what help is available.

Dear Friends of Feeding Matters,

The last time I wrote to you, I acknowledged that the season I was in felt difficult. It was a new year, but things didn’t feel new. Things felt challenging and daunting. Now, however, with the spring air, our upcoming conference, and the continued growth in the recognition of PFD, I am feeling renewed, as one should as we emerge from our winter slumber. As we make plans to enjoy the coming seasons, I am excited so share the plans we’ve made for Feeding Matters.

Last year we leveraged your input through community driven change questions and during the International Pediatric Feeding Disorder. We took that input and partnered with our organization’s leaders to develop our strategic plan through 2026. We know that PFD afflicts more than 1 in 37 children under the age of 5 in the United States each year, yet the disorder is still largely unknown and misunderstood. Therefore, this plan is focused on raising awareness of PFD by educating the healthcare community and informing the public about this often invisible disorder to support early identification.

To achieve our goal of PFD becoming a household name like other childhood conditions, we are focused on three interrelated activities:

• Digital First: Spread PFD throughout digital platforms worldwide so audiences know PFD and Feeding Matters, and have the necessary resources to support their family or professional life.
• Community Driven: Leverage an impassioned base of families, healthcare professionals, and community members to ensure our content, awareness, and consensus efforts are in line with the community’s needs. This includes pursuing additional research in the field and supporting the early identification of PFD.
• Targeted Media Outreach & Storytelling: Tell the PFD story through the media and additional means so that PFD awareness reaches those who are not directly touched by the disorder. Leverage grassroots outreach to build impactful partnerships that grow awareness with the general public.

These efforts will require the involvement of our entire PFD community. We will continue to share updates with you and seek feedback. Everything we have accomplished as an organization thus far has been the result of an incredible amount of passion, commitment, and collaboration from our supporters. Accomplishing this plan will be no different. Over the next several months (and years!), we will be asking for your help, but one of the most vital things you can do is to please follow us on social media and like, comment, or share to help us spread our message. This work happens because of YOU and we are excited to step into the future together.

Best wishes,

Jaclyn Pederson, MHI
Chief Executive Officer