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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.

1. 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.
2. 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!
3. 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 events@feedingmatters.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!
4. 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.
5. 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!

Sincerely,

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.

Best wishes,

Jaclyn Pederson, MHI
CEO

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.

Best wishes,

Jaclyn Pederson, MHI
CEO

“Is my child just being picky?” This is a question that parents and caregivers may often ask themselves when mealtimes become a struggle. And indeed, there are times when an infant or child just finished a growth spurt and seems to be eating less. Or when a toddler refuses most foods except ones of a certain color or texture, which is called a “food jag”. A food jag is often a normal part of childhood development. But when does it become “not normal”?

A Pediatric feeding disorder (PFD) is defined as impaired oral intake that is not age appropriate, lasts at least 2 weeks, and is associated with medical, nutritional, feeding skill, and/or social-emotional challenges.1

There is often an underlying reason for the pediatric feeding disorder that needs to be uncovered. A registered dietitian who specializes in pediatrics is a qualified heath care provider to work with you and your child. They are a credentialed specialist who can assess your child’s growth and nutrition needs. A nutritional assessment may include several components:

• Medical history
• Diet history
• Medical tests or procedures
• Laboratory values
• Anthropometric measurements (weight, length, head circumference)
• Physical examination

A registered dietitian may also complete a behavioral and feeding disorders assessment that identifies:

• Limited food variety acceptance (color, texture, smell)
• Limited tolerance to enteral nutrition (vomiting, diarrhea, constipation)
• Aversion to foods/beverages
• Mechanical issues (gagging, choking, aspiration)
• Neurological (failed swallow study)
• Inadequate enteral intake (food refusal at meals, prolonged feeding times, muscle wasting)

A complete assessment is more critical in a pediatric patient versus an adult patient because children can become malnourished quicker than adults. Children have lower body fat, lower muscle mass, but high calorie requirements. Risk for inadequate nutrition increases when a child is not consuming sufficient key nutrients like protein, fat, iron, calcium, and Vitamin D. This is important because children, especially in the first 1000 days of life, are undergoing a period of rapid brain growth which is the foundation for optimal development, a key factor in long-term health.2

Registered Dietitians are a specialist that your doctor and/or insurance provider can refer you to. Registered dietitians may work in private practice, in hospitals and in specialized feeding team clinics. They may also be employed by companies that manufacture formula and food supplements. Early Intervention, Head Start, and the WIC program are government entities that may have registered dietitians as part of their staff. They are a valuable resource to support you and your family!

References
1. Goday PS, Huh SY, Silverman A, Lukens CT, Dodrill P, Cohen SS, Delaney AL, Feuling MB, Noel RJ, Gisel E, Kenzer A, Kessler DB, Kraus de Camargo O, Browne J, Phalen JA. Pediatric Feeding Disorder: Consensus Definition and Conceptual Framework. J Pediatr Gastroenterol Nutr. 2019 Jan;68(1):124-129. doi: 10.1097/MPG.0000000000002188. PMID: 30358739; PMCID: PMC6314510.

2. Schwarzenberg SJ, Georgieff MK; COMMITTEE ON NUTRITION. Advocacy for Improving Nutrition in the First 1000 Days to Support Childhood Development and Adult Health. Pediatrics. 2018 Feb;141(2):e20173716. doi: 10.1542/peds.2017-3716. Epub 2018 Jan 22. PMID: 29358479.

Feeding Matters Volunteer Spotlight is a monthly Q & A series that shares the stories of our growing network of change agents, the driving force behind our vision to create a world where children with pediatric feeding disorder will thrive. This month we bring you Alexandra Marcy.

Tell us a little bit about yourself and what you do.
I am a full time stay at home mom to 3 amazing kiddos! I have a son who is 13 years old and 2 daughters, one is 9 and the other is 2. My husband and I own a few rental properties that I manage and we also own an auto repair shop that my husband runs. Our life is very busy but I love it!

What motivated you to become involved with Feeding Matters?
My youngest daughter Emerson was diagnosed when she was about 4 months old with PFD and some other congenital disorders. I was introduced to this organization through my feeding therapist. The volunteers have been wonderful and supportive. After my daughter was stable and has been able to maintain that, I decided to offer my support to other mothers who are struggling with this as well.

How have you volunteered with Feeding Matters?
I am currently a family coach.

What has been your favorite part of volunteering with Feeding Matters?
Giving hope to families when they feel there isn’t any.

What sets Feeding Matters apart from other organizations?
The volunteers and coaches all have dealt with some sort of PFD and are sharing their experiences with PFD.

Feeding Matters Volunteer Spotlight is a monthly Q & A series that shares the stories of our growing network of change agents, the driving force behind our vision to create a world where children with pediatric feeding disorder will thrive. This month we bring you Robyn Neiderer.

Tell us a little bit about yourself and what you do.
I am a wife to an incredibly supportive husband, Matt, along with being a blessed Mama of four children (Abbie 15 yrs, Danny 13 yrs, Patrick 8 yrs, and Gabrielle 3 yrs). Professionally, I am an Adult Nurse Practitioner that has a wide variety of work experience in surgical trauma, interventional radiology, women’s health and general health wellness. I am a devoted yogi practicing all forms of yoga/meditation daily to maintain balance in our crazy life! Our crew loves to travel to new adventurous destinations with our favorites including any island of the Bahamas or Caribbean!

What motivated you to become involved with Feeding Matters?
My son, Danny, was born with Silent Reflux which turned into Failure-to-Thrive. He associated eating and drinking with pain, which eventually turned into him fully rejecting all forms of food and his weight dropping significantly. We struggled with his eating from birth until he was 3 years old, when his symptoms finally resolved as he outgrew the condition. During that challenging time our family didn’t know of Feeding Matters and felt very alone going through all of his specialist appointments and learning how to teach him to eat. Shortly after life started improving for us, a friend referred me to Feeding Matters and I was so relieved to find this incredible organization! I didn’t want any family to go through what we went through without support. I immediately signed up to become a volunteer as a Family Coach with the Power of Two Program providing assistance to families affected with feeding challenges of all types. I have enjoyed connecting with families over the past 10 years and look forward to continue my work with Feeding Matters!

How have you volunteered with Feeding Matters?
I have worked as a Family Coach with the Power of Two Program consistently for 10 years. I was honored to speak at the 2017 Feeding Matters Conference sharing the family perspective of life with a child having a feeding disorder. It was truly a gift being awarded the 2017 Community Ambassador Award that same year! I worked as a member of the Family Advisory Council collaborating advocacy of family priorities with medical professionals. I also have worked as a Community Ambassador locally within my community promoting the mission of Feeding Matters to different pediatrician private practices and pediatric services. I was blessed with the opportunity to work on a professional level with Feeding Matters as a Parent Support Program Coordinator guiding the work of all of our wonderfully talented volunteers!

What has been your favorite part of volunteering with Feeding Matters?
Connecting with families around the world who have experienced similar feeding challenges that our family went through has been such a rewarding role! You learn that we all may live different lives but our families have many similarities that we sometimes struggle with. My absolute favorite part of volunteer work has been listening to different family journeys and hearing the relief in a parent’s voice when they realize that they are not alone. That form of support that we provide, encouraging families to recognize the strength that they truly have within themselves to advocate for their children is such a gift!

What sets Feeding Matters apart from other organizations?
Feeding Matters is a unique organization in that they have the ability to be a family advocate but also balance the important work of collaborating with medical professionals. It is this delicate relationship with families and medical network in our world that need to work together implementing changes. The next generation of our children and their needs must be made a priority! The journey that Feeding Matters continues daily to promote awareness and advocacy of pediatric feeding disorder will benefit our society as a whole moving forward into the future!

Feeding Matters Volunteer Spotlight is a monthly Q & A series that shares the stories of our growing network of change agents, the driving force behind our vision to create a world where children with pediatric feeding disorder will thrive. This month we bring you our Family Guide Authors, Reviewers, and Editor.

Family Guide Authors

Deniselynn Henderson

Tell us a little bit about yourself and what you do.
I am a mother of two, Trey (19) and Bailey (21). I love spending time with my kids, traveling, and practicing yoga. My two favorite places to hang out is at Lake Michigan beach (luckily only 25 minutes from my house), and outside with my three Nigerian Dwarf goats (Peppermint Patti, Peanut, and Lucy). I am gluten free so I spent a lot of time cooking and baking with local ingredients or with items from my garden.

I have been a pediatric occupational therapists for over 22 years. I have the best of both worlds as I teach at a university and work part time in a pediatric clinic. I have been able to incorporate my love of animals into my profession working with horses, dogs, and goats which has been rewarding to see the progress of children and families when they are around animals. I enjoy working with graduate students at the university, being part of their studies and seeing how they contribute to the occupational therapy profession.

What motivated you to become involved with Feeding Matters?
I was introduced to Feeding Matters from a colleague and I found an instant connection with their organization. As a mother, I did not have resources to help me manage my own son’s feedings issues 19 years ago even though I had recently graduated from occupational therapy school. Throughout my career, I devoted time finding resources for families so they would not feel the sense of loss I had. I was thrilled to find an organization that embodied the same passion to help families, share stories, while advocating for diagnostic changes in the health care world. I was motivated to be part of a community that could understand my journey as a parent.

How have you volunteered with Feeding Matters?
I have been part of the “Power of Two Family Coach” program since 2019 and had the opportunity to be a contributing author on the Feeding Matters Manual that was re-published in 2020.

What has been your favorite part of volunteering with Feeding Matters?
I love connecting with families and listening to their stories. You hear in their voices and see on their faces the appreciation for Feeding Matters. I enjoy learning from Heidi and other family coaches. Heidi is an amazing person that takes time to check in on you and your child, provides support and encouragement despite the many job responsibilities she carries. I love how positive and productive Feeding Matters is an organization for myself and families.

What sets Feeding Matters apart from other organizations?
Feeding Matters is an organization that listens to families and their stories. It recognizes the struggles and the need for family advocacy and necessary health care education. Feeding Matters values the contributions of parents and professionals and creates a platform for everyone to connect, learn, and support each other. Feeding Matters has developed an effective family coaching program across the world, making ground breaking impact on families and communities.

Kelsey Thompson

Tell us a little bit about yourself and what you do.
I am a speech language pathologist in private practice, and a PhD student at UNC Chapel Hill. In my role as a SLP I specialize in pediatric feeding disorders, but also see kids with a variety of other diagnoses. In my PhD program, I am interested in studying how children learn to eat solid foods and how we can use biobehavioral measure to study this transition in infants at high risk for long-term feeding disorders.

What motivated you to become involved with Feeding Matters?
After being exposed to Feeding Matters, I was compelled by its mission and commitment to integrating providers, families, and researchers, as both a clinician and researcher. Further, walking alongside families of children with PFD as a speech pathologist and seeing their hard work motivated me to give back!

How have you volunteered with Feeding Matters?
My major role thus far has been as a co-author of the Family Guide. I have also helped creating some of the graphics you see on social media and for reports!

What has been your favorite part of volunteering with Feeding Matters?
My favorite part of volunteering with Feeding Matters has been the people! It has been a joy to work with people from a variety of different backgrounds – researchers, parents, therapists – to advance this important work.

What sets Feeding Matters apart from other organizations?
Feeding Matters is unique in that it truly integrates all of the stakeholders involved in pediatric feeding disorders, including families, clinicians, and researchers. This is critical for advancing advocacy, education, support, and research.

Family Guide Authors

Tessa Gonzalez

Tell us a little bit about yourself and what you do.
I’m mom to two little ones including a 4 and a half year old with pediatric feeding disorder who has a CASK gene mutation.

What motivated you to become involved with Feeding Matters?
I’ve seen first-hand how helpful it can be to have personalized support from other people who know what it’s like to be in your shoes. I wanted to be able to use my experiences to help other families.

How have you volunteered with Feeding Matters?
I have mentored a couple of families through the Power of Two program and provided feedback for the family guide which I loved being able to be a part of.

What has been your favorite part of volunteering with Feeding Matters?
I love talking with other families and brainstorming ways to help them best advocate for their kids. It’s really easy to doubt yourself when dealing with a poorly understood condition like PFD. Sometimes all you need is for someone else to remind you that you know your child best and that it’s ok to be an advocate.

What sets Feeding Matters apart from other organizations?
The huge variety of efforts that Feeding Matters has taken on. I think Feeding Matters has seen and addressed so many needs which is unusual compared to other organizations I’ve seen.

Ronald Serbin

Tell us a little bit about yourself and what you do.
I am a general pediatrician in Phoenix, with an interest in caring for children with special needs, complex medical problems, and pediatric feeding disorders.

What motivated you to become involved with Feeding Matters?
I met two of the founders Chris Linn and Shannon Goldwater at their booth during a pediatric conference around the beginning of Feeding Matters, when it is was called P.O.P.S.I.C.L.E. I recognize the number of children that I had seen with feeding difficulties and the lack of training I had in treating children with feeding disorders during my training. I felt that I could give their organization my perspective as a pediatrician who cares for children with feeding difficulties.

How have you volunteered with Feeding Matters?
I began on their Medical Advisory Council, participated in multiple Feeding Matters Conferences consortiums, including speaking at the conference and the annual fundraising lunch, participated at the start of the development of the Infant and Child Feeding Questionnaire and development of the Pediatric Feeding Disorder as an entity.

What has been your favorite part of volunteering with Feeding Matters?
To be able to contribute, albeit a small part, in the growth, influence, and importance of Feeding Matters in their development as a small local organization to an international organization which helps children and families all over the world in their mission to overcome a Pediatric Feeding Disorder.

What sets Feeding Matters apart from other organizations?
Feeding Matters has a mission to advocate for children, their families and providers in all disciplines with a pediatric feeding disorder. Feeding Matters accomplishes these goals by coordinating resources from the expertise in disciplines from all over the world to develop awareness, education, public policy, research, earlier and improved identification, and improving outcomes of children with pediatric feeding disorders. These objectives have been accomplished and new ideas are developed because of the vision and perseverance of the Feeding Matters leadership, staff, and support from their partners around the world.

Family Guide Editor

Loran Edwards

Tell us a little bit about yourself and what you do.
I am an occupational therapy student at the University of Puget Sound in Washington state and I am the mother of a 10 year old with a PFD.

What motivated you to become involved with Feeding Matters?
When my daughter was born premature and needed a feeding tube to eat, I felt very alone and scared. Through the internet, I found other families who knew what I was going through and helped me through the darkest times. A few years later, I found Feeding Matters and knew it was time for me to give back and start helping others as I had been helped.

How have you volunteered with Feeding Matters?
I have been a family coach for about 6 years. I have also worked on several editing projects for Feeding Matters, the latest one being the Family Guide. I am so excited about it and thing it is a great resource for families!

What has been your favorite part of volunteering with Feeding Matters?
I have loved connecting with other families and learning from them. It is a wonderful community helping each other to navigate the confusing, often scary, world of PFD.

What sets Feeding Matters apart from other organizations?
I don’t know that other organizations don’t do this, because I am not involved in other organizations, but everyone at Feeding Matters is very easy to reach out to and talk to and they really care about the families they are serving. And EVERYONE understands the challenges that come with PFD! It is wonderful to talk to people without first having to explain what you are experiencing.