At the 2022 Feeding Matters Annual PFD Alliance Symposium: Stepping into a Brighter Future, a session of the 9th 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 email@example.com 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.
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!
Jaclyn Pederson, MHI
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.
Jaclyn Pederson, MHI
Chief Executive Officer
We have many exciting things to share with you at the start of this new year and many opportunities for you to get involved! Our mission is Furthering advances in pediatric feeding disorder by accelerating identification, igniting research, and promoting collaborative care for children and families – and we will always stay laser focused on that mission. Thank you for embracing a new year of challenges and a new year of opportunities with us.
- Become a monthly donor
Monthly donors are like your very own subscription to support Feeding Matters and the families we serve. What’s a better way to support than to keep us top of mind every month? For even $10/month, you can make a huge impact in the lives of families and children with PFD. Your donation goes to support our four pillars of Education, Advocacy, Research, and Family Support.
- Follow us @feedingmatters and like, comment, or share!
One of the best ways we can spread awareness about pediatric feeding disorder is through social media. So be sure to follow us on social channels @feedingmatters and interact with us, we’re all in this together!
- Host an event to support Feeding Matters and spread PFD Awareness!
Ready to take your support to the next level? Consider hosting an event fundraiser for Feeding Matters. These events raise vital funds and build awareness to help create a world where children with PFD will thrive. If you are interested in hosting an event, we are here to share our materials with you to make it a success. Please email us at firstname.lastname@example.org if you would like to learn more. We’ll be sharing some of the events taking place across the country with all of you in future newsletters as these events are critical to our success!
- Ask new parents how feeding is going…and listen when they respond
Time and time again, we hear from families that they felt alone in their PFD journey or that their family and friends could not understand. So one of the biggest ways you can support any family with an infant or child is to just be there. To listen without judgment and without advice. Your presence can be the thing that helps a parent or caregiver know that they are not alone.
- Attend the International PFD Conference
If you are a family member or a healthcare professional, you will find what you are looking for at the International PFD Conference. While this event is available on-demand, you’ll want to block out your calendar for the days if you can as you will not want to miss the flurry of conversations from passionate people across the world. This short event makes an impact that lasts throughout the whole year.
Join us as we celebrate wins, big and small, for families facing PFD! Today, we celebrate the wins of Jax Mieras! Jax’s parents have attended Feeding Matters’ conferences and received support through the Power of Two program. His mother, Amber, now volunteers as a family coach in the Power of Two program.
Our PFD journey has, like many others, been full of hills and valleys. We have had growth, and regression, over the last 7 years. We are have learned to celebrate the successes, no matter how small, and honor where Jax and our family is in the journey. We have learned to be grateful for the support we have, for the medical assistance we have to help keep Jax healthy, all while trying to continue to grow as a family.
Jax received his first feeding tube at 4 months old and we held onto hope that he would be eating soon. First it was, after we got his GERD under control he would eat, then we were told that after his open heart surgery he would be eating. Then we were told that after his sister starting eating, he would start eating. We have learned to no longer think our experiences and journeys would be just like other children with PFD. Each case is so different and each child progresses on their own time.
Jax has gone to therapy for 7 years, we have participated in intensive programs and out-patient programs, and we are finally getting Jax more comfortable being around food and participating in the family meal experience. While he still has anxiety being around new foods and doesn’t want to bring a lot to his mouth, he has come leaps and bounds with wanting to sit with us at dinner and eat. (Although our meals usually involve prepping feeding tools, preferred and non-preferred foods, a task that we can use as a reward, and more). Jax also has started enjoying playing “kitchen” and making food with us.
Our journey has taught us that it isn’t just Jax’s PFD journey, but something that involves our entire family. His sister, Nayeli, is great at encouraging Jax and celebrating with us when we have a great meal. We celebrate things like Jax drinking water, eating and playing with food at school, and asking for our family to enjoy a meal at the table together. We are thankful to have family members that understand where we are, and therapists and teachers that help encourage Jax to continue with his growth.
From not being able to be near food, to enjoying condiments like syrup and ketchup, to being happy to lick a sucker, taking a sip of water while playing outside, to putting crumbs in his mouth, we are making progress….and Jax is happy. We do have difficult moments when trying new things or challenging Jax more, but he is getting more and more confident.
We know our journey will be a long one, that will most likely involve feeding tubes, therapies, tears and high-fives. But this is where we are….and while it is hard, it has shown us how strong our family, and out son is.
Thank you for letting us celebrate with you, Mieras Family!
Dear Friends of Feeding Matters,
We’ve had an active past few months as we work to close out 2021 successfully. Hopefully, you’ve been able to take some time to view Easton’s story as the first child diagnosed with pediatric feeding disorder (PFD) in the United States, or participated in our Annual Community Event, or even used some of our resources available in the PFD ICD Tool Kit. Thank you for your part in supporting these latest updates and events. This continues the culmination of years’ worth of work to create momentum behind PFD. Now, we prep for 2022 to ensure we sustain and grow this momentum and ultimately reach even more families.
Saying thank you and sharing our gratitude to our community of supporters is something that we try to do often but to be honest, it never seems enough. The Feeding Matters community spans state lines, professional disciplines, parent experiences, and philanthropic support. We reach all 50 states and over 42 countries as we build a community of inspiration, dedication, and commitment to creating a world where children with PFD will thrive. Reaching our vision takes all of us working together and we could not do this without you so thank you for your participation and support!
Jaclyn Pederson, MHI
Chief Executive Officer
Friends of Feeding Matters,
Innovation is often viewed as a buzzword. But, when innovation is one of your organization’s values, it needs to be so much more than a buzzword. At Feeding Matters, we do not believe in doing things the way they always have been done. If we did, there wouldn’t be the need for a new PFD diagnosis. We believe in approaching problems with a creative and collaborative lens. We take the initiative to leave comfort zones, embrace new ideas, and generate change.
Tomorrow, the impact of innovation will be felt all around the United States as all children struggling with feeding will be eligible to receive the formal pediatric feeding disorder (PFD) diagnosis on their medical records. Tomorrow is a new day for the feeding community. It is not the end, but rather a new beginning.
And that value will guide the Feeding Matters team and community to continue innovating to reach our vision of creating a world where children with PFD will thrive. As always, thank you for being a part of this journey with us.
Sincerely,Jaclyn Pederson, MHI
Chief Executive Officer
Dear Friends of Feeding Matters,
As I meet with people in the community, I hear “the feeding community is so small” from those who are well-aware of pediatric feeding disorder (PFD) or “how many have PFD, it must be a rare disorder right?” from those who are just being introduced to PFD. Neither of these are true. In fact, we all know someone personally affected.
More than 1 in 37 children have PFD under the age of 5 in the US annually. PFD is more prevalent than Autism and Cerebral Palsy. Families feel alone. Healthcare professionals need education. PFD needs more awareness.
I have been with Feeding Matters in various roles for over 8 years. Looking back at the work we were doing when I started with the organization in 2013, I can see that things looked so different for us then. It is easy to forget how far this organization has come. From our beginning, we were supporting families through our Power of Two program and providing information and resources on our website, but we continued to run into the barriers that existed – no one taking this issue seriously. Now I think of the work of this whole community and what it is like for us today. We have come a long way. In the last few months, we had a successful conference, an exciting PFD awareness month, and are preparing for when PFD officially becomes a stand-alone diagnosis in the US in Oct 2021.
Now, those barriers still exist but we continue to chip away at a very large mountain. One day, I’ll be meeting with people in the community, and they will not meet me with the word “rare”. Soon, the general public will know about Feeding Matters and PFD. Thank you for your support and partnership in this work.
Jaclyn Pederson, MHI
Dear Friends of Feeding Matters,
We live and breathe by the stories of our PFD community. The stories of triumph, of progress at any cost, and even the stories of lost weight or a progress plateau.
Unfortunately though, sometimes the story is that a family has found us when they have already been struggling for quite some time. While it is not too late at any point in a family’s journey to find Feeding Matters’ support, we do hope that families can find us at the start of their journey and are actively working in many ways to ensure this is the case for families.
The first couple years of our journey with PFD brought many challenges and questions that seemed to isolate us. Finding Feeding Matters brought us much-needed resources and comfort – we were no longer alone navigating PFD. Now I volunteer with Feeding Matters to bring their support to others struggling with PFD; hopefully easing journeys and perhaps improving outcomes. -Brandt Perry, Family Advisory Council Chair
PFD Awareness is key to supporting families, educating professionals, and changing the system of care. Due to this, we have decided to move PFD Awareness Month to May to bring even more recognition and impact to this issue for years to come. Therefore, this May we encourage you to follow us on social, share your own stories, and empower others to learn more about this condition that affects more than 1 in 37 children under the age of 5 in the United States each year.
This May and even June, we commend our PFD community, honor our partners, and celebrate the caregivers. So, this Mother’s and Father’s Day, we celebrate all caregivers, whoever you are. We see you – your strength, your courage, your love. We are amazed by you.
Jaclyn Pederson, MHI