The National Perinatal Association’s (NPA) interdisciplinary Guidelines for NICU Discharge Preparation and Transition Planning have been published! We appreciate the opportunity to have contributed to this open access adaptable and actionable work. Please download the complete publication and visit the NPA’s “NICU to Home” landing page for additional resources.
When Feeding Matters approached me about serving as this year’s keynote speaker at the International Pediatric Feeding Disorders Conference (IPFDC), I was honored. My role as the President and CEO of the National Institute for Children’s Health Quality (NICHQ) means that I am constantly learning about challenges that families and children face when it comes to healthcare and strategizing ways to create change. I know, and you know, that change for the future is vital, but how can we help those families who are unable to receive services now? Change is important. Rapid change can be vital.
This is part of the reason why I am so pleased to serve as this year’s keynote speaker for Feeding Matters. This organization is 15 years old. And in that time, it has evolved from a parent support organization to an organization that helps pave the way with the medical community to create the rapid change I mentioned. Through their collaborations, innovations, and strategic vision, Feeding Matters put pediatric feeding disorders (PFD) on the map, most notably with the recent establishment of diagnostic codes. These are the kinds of rapid changes that are so powerful.
I am looking forward to speaking with all of you at the conference about Driving Change to Improve Children’s Health. Whether you are attending as a professional, parent, or community member, your presence at the IPFDC is vital so that we can all continue the momentum that Feeding Matters has generated to rapidly change and improve the way children with PFD are cared for.
About Scott D. Berns, MD, MPH, FAAP
Berns has served as President and CEO at the National Institute for Children’s Health Quality (NICHQ) since 2015, where he applies his extensive experience working across academic, clinical, nonprofit, community, and public health settings to lead initiatives aimed at driving change to improve children’s health. Berns is a nationally recognized expert in quality improvement science in maternal and child health and has published extensively.
Berns is also Co-Founder and Board Chair of The Progeria Research Foundation (PRF). He ensured PRF was a key force behind the Progeria gene discovery and has developed impactful international programs for Progeria families and researchers. In addition, he currently serves on the Executive Committee of the American Academy of Pediatrics’ Council on Quality Improvement and Patient Safety, American Academy of Pediatrics. Prior to joining NICHQ, Berns spent 14 years at the March of Dimes National Office serving as the Senior Vice President of Chapter Programs and the Deputy Medical Officer. He provided direction in education and community services to all March of Dimes state-based chapters, including DC and Puerto Rico.
Berns is a board-certified pediatrician and pediatric emergency physician. He is a Clinical Professor of Pediatrics at the Warren Alpert Medical School of Brown University and Clinical Professor of Health Services, Policy and Practice at the Brown School of Public Health. Berns also completed a one-year White House Fellowship where he served as a Senior Advisor to the U.S. Secretary of Transportation.
Dear Friends of Feeding Matters,
Typically, when I sit down to write these messages to you all, I try to share messages of inspiration or hope. But I have to be vulnerable with you right now. It’s been tough to find that inspiration, even in the light of a new year, which is typically a source of renewal for me and many others. And the reason I share this, besides always wanting to be an authentic leader, is that I know others have entered the year feeling the same way and I want you all to know you’re not alone. Whether you’re trying to carry out feeding therapy recommendations at home with your child or providing care for families day in and day out, it’s ok that the start of this year isn’t feeling great and it’s ok to give yourself the grace and space to feel that way. You can give yourself permission to be the best self that you can today, with no judgment or expectation. This is what I’ve been trying to do for myself, and encouraging the Feeding Matters team to embrace as well. If these last few years have taught us anything, it’s that we need to be kind to ourselves.
When I’m feeling a little less than my best, I focus on the good. At Feeding Matters there is a lot of good. We truly do have many exciting things to share with you and many opportunities for you to get involved this year. 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. This year, we will do great things together and will give ourselves space and grace when we need it.
Jaclyn Pederson, MHI
Chief Executive Officer
Feeding Matters will honor Jim and Jo-Ann Armstrong with its Visionary Award at the 9th Annual Community Event on November 5, 2021.
The Armstrongs have been integral supporters of Feeding Matters from its inception. The Armstrong Family Foundation was one of the organization’s first funders which allowed for critical early growth which opened the doors to future funding. Those were not the only doors the Armstrong family opened. The first office space that Feeding Matters called home came through Jim’s leadership and generosity. Several of the Armstrong family members have served in a leadership capacity including on the Board of Directors and as Lead Partner for Feeding Matters as part of a grant received from Social Venture Partners. Additionally, the entire family has continued to advise Feeding Matters over the years, and most recently, invested in the Power of a Name Campaign.
“When we first met leaders at Feeding Matters, we were appreciative of their mission and the energy they brought to addressing the need. They had a clearly defined strategy, and we were happy to be early financial supporters,” said Jim Armstrong. “We watched them grow from a start-up to the impressive and important institution they are today. We are thrilled with the success of Feeding Matters and congratulate them on the relief they have brought to thousands of families,” Armstrong concluded.
“The Armstrong family has been pivotal in allowing Feeding Matters to become what it is today,” said Jaclyn Pederson, chief executive officer of Feeding Matters. “We are forever grateful for their trust, leadership and support.”
Jo-Ann Armstrong has been an active figure in Phoenix philanthropy for decades. She is currently a board member of the Armstrong Family Foundation and the Kiita Foundation. Previously, she held board member positions with the Salvation Army advisory board and ASU’s ACES program. In addition to raising four children, she was instrumental in the development of JDA Software in its’ early years and has received many awards, such as the Paradise Valley Volunteer of the Year, ASU’s Outstanding Community Partner and the 2002 Sally Award from the Salvation Army. She has also served as a member of ASU’s Women and Philanthropy.
Jim Armstrong is the founder of JDA Software Group, Inc., (now Blue Yonder). He has served as CEO, director, chairman and co-chairman since founding the company in Canada in 1978. He is currently serving as director and President of JDA Investments (US), Inc. He has served on the board of directors for various companies. He is President and Chairman of the Armstrong Family Foundation, President and Chairman of the Kiita Foundation, and Director of the Rancho Feliz Charitable Foundation. He has received numerous awards and honors including Arizona Software Association Business Leader of the Year, Ernst and Young Master Entrepreneur of the Year Award, Ernst and Young Spirit of Philanthropy Award, Ed Denison Business Leader of the Year Award, National Society of Fundraising Executives Spirit of Philanthropy Award and Arizona Technology Council’s Lifetime Achievement Award.
Feeding Matters’ Visionary Award was created to recognize an individual(s) or corporation who has exhibited passion and commitment to help further the advances in pediatric feeding disorders. This annual event will be livestreamed on a national stage, from Phoenix, AZ on November 5, 2021 at 9:00 a.m. AZ and 12:00 p.m. EST.
Families of children with pediatric feeding disorder around the United States have long struggled to advocate and explain their children’s struggle in part because there has never been a diagnostic code or name for PFD. That changed last week.
In collaboration with Desert Valley Pediatric Therapy in Arizona, Feeding Matters was connected with Easton and his mom Natalie. While Easton’s journey with PFD is not new, he is the FIRST child with an official PFD diagnosis, using the just-released ICD-10 codes. Hear from Easton’s mom about what having an official diagnostic code means to her and her family. We will follow Easton, and other families using the new codes, as they continue their journey with their official diagnosis of pediatric feeding disorder.
Feeding Matters is now gathering stories of families facing PFD. Celebrate the new diagnostic codes with us by reading these stories or sharing your own.
We are excited to share with you our volunteer Medical Director for the 2021-2022 term, Dr. Richard Noel. We also would like to ardently thank Dr. Jaime Phalen, our previous volunteer Medical Director who served in many capacities to advocate for children with PFD over the past few years and remains a close advisor.
Our Medical Director, and all of our PFD Alliance leadership is committed to creating a world in which children with PFD thrive. Additionally, they support Feeding Matters’ philosophy that: we believe families are an equal and valued member of the treatment team and should be respected in this way; we view PFD as a multi-facet challenge comprised of 4 domains; we recognize the need for evidence-based practices; and we believe all sectors are influential and multiple perspectives are necessary to create a functional system of care.
Our CEO, Jaclyn Pederson, recently sat down with Dr. Noel to learn more about his passion for children with PFD.
Tell our feeding community a little bit about yourself. How did you come to practice GI medicine? How did you get involved with Feeding Matters?
As all medical students, I was exposed to all medical and surgical fields and found pediatrics to be the most fun and rewarding. Once in a pediatric training, I found pediatric GI to be the most interesting and decided to pursue additional formal GI fellowship training. It was during this time in Cincinnati that I was initially exposed to pediatric feeding disorder and aerodigestive diseases, both within programs that were the legacy of Dr. Colin Rudolph.
Upon completion of my GI training, I moved to Milwaukee to work with Dr. Rudolph where I learned much more about pediatric feeding disorder from Dr. Rudolph and the active group of interdisciplinary colleagues he organized. I met Shannon Goldwater and Chris Linn and became formally involved with Feeding Matters in 2010, following the initial involvement of Dr. Rudolph and other colleagues with the nascent stages of what grew to be this amazing advocacy organization.
How do you see the PFD consensus definition changing care for our children with PFD?
Feeding problems in children are not new and many have attempted to define them, typically from a perspective that is limited to their own field. Apparently disparate terms like dysphagia, malnutrition, ARFID, infant anorexia, all probably refer to similar things, but are limited by the narrow scope of practice of those who generated them.
The 2019 consensus definition organized by Feeding Matters is the first truly multidisciplinary construct that recognizes the many elements that form pediatric feeding disorder. Furthermore, this consensus definition is written according to the International Classification of Functioning, Disability and Health (ICF), recognizing the disability that can accompany PFD, but has been poorly recognized in considering access to therapies and special accommodations by schools and other settings.
PFD is best managed by an interdisciplinary team where the family is primary. Based on your experience as a gastroenterologist, why do you feel a team-based approach is so important?
The nature of PFD is that relevant issues in a given patient may fall outside the scope of practice in a single discipline (i.e., a gastroenterologist may have expertise in issues relating to the upper GI tract of a child but does not have the same understanding regarding the mechanics of swallowing). It is by this necessity that team-based care is always best, whether in an interdisciplinary team at a large referral center, or a smaller group of specialists who work apart, but form a “virtual team” that can still address all relevant issues of a child with PFD.
What advice would you give the feeding community to help them access or provide optimal care for children with PFD?
Families of children with PFD need to be educated consumers who can push their providers to ensure all relevant needs are met. Do we need a referral to a psychologist? Do we need to enroll a dietitian who can help a feeding therapist broaden the choices of food with a given texture? Sometimes, it takes an educated family to push a provider to become better at managing a complex problem, such as PFD.
We have asked several questions about your connection to PFD. Please share something about yourself that we may find surprising, or we might not know.
I was born in Mexico City and Spanish was my first language. We moved to San Antonio, TX when I was 9 years old, and I always benefited from my family’s bicultural perspective on issues.
Friends of Feeding Matters,
A new year, a new beginning, and a chance to dream. We were proud to share our 2020 milestones with you and we look forward to what the future holds. This journey, not unlike PFD itself, is a long one – so we must celebrate every good step forward along the way!
Hope & Trust have lately been constant themes on our 7-person team calls. We have so much hope for what 2021 will bring – for our families, our professionals, and our organization. And, trust is part of our team norms, simply stated: “we practice bravery and recognize the power of vulnerability”. This is no different than what you do day in, and day out as a family and professional. We know those steps towards progress can feel large and stressful, but we also want you to know you can trust yourself along the way and lean on us for some hope when that trust falters. We know that we are successful because of your trust in us.
So, as we start a new year, we re-commit to you to continue what we started. As we look forward to 2021, we hope you will continue to share your milestones, both large and small so we can celebrate them together. We hope you have a great 2021 and trust that together, we will move a few steps closer to our vision of a world where children with PFD thrive.
Jaclyn Pederson, MHI
Chief Executive Officer
2020, what a year!
In 2019, we were proud to share with you the publication of our paper declaring PFD a stand-alone condition -a catalyst for large-scale change and this year we were proud to share a HUGE next step in the journey to bring validity to this condition.
In August, we received word that pediatric feeding disorder will have its own diagnostic code in an upcoming edition of the ICD-10 manual —– meaning that physicians will be able to formally diagnose PFD and children will officially have this on their medical record.
In 2020 alone, we have expanded our support and educational materials for families, hosted our elite international PFD conference that reached all 50 states and over 34 countries providing evidence-based education on PFD, and achieved significant advocacy milestones.
In order bring PFD to the forefront, we need to support our claims with evidence. Therefore, this year, we published our 2nd phase of research on our Infant and Child Feeding Questionnaire in the Journal of Pediatrics. This ground-breaking work opens the door for children to be screened for PFD so that we can prevent the long-term outcomes that occur when we don’t pay attention to this early enough.
Then, we were the catalyst to the research that showed that 1 in 37 children have PFD and even more significant – 1 in 3 to 5 children with a chronic disease has PFD.
We have also secured a formal proclamation naming December PFD Awareness Month from Arizona’s Governor Ducey and a few others states.
And lastly, we now know that PFD will be its own diagnosis which is the foundation that families need for better insurance coverage.
All of this happened this year, during a global pandemic. This is a moment to celebrate!
While it can feel odd to celebrate right now, it is so important to us to honor this success and all of the work from our entire community to achieve these efforts. We have momentum and we are not stopping.
We will be here after this pandemic.
This year’s accomplishments have a very personal meaning to all of our professionals and families.
We need you to continue this momentum with us. The time is now, to take your place at the table to help children with PFD by supporting Feeding Matters.
Please join us in creating a world in which children with PFD thrive. Your donation today directly supports the work we are doing to support families and professionals and to bring PFD to the forefront.
Congratulations Shannon Goldwater
Founder and Emeritus Board Member
Since 2006, Shannon Goldwater has been a visionary leader, ardent supporter, and steadfast champion as Founder of Feeding Matters. Shannon’s story began in 2002 when her premature triplets required feeding tubes to survive and suffered every time they were fed. Her family’s harrowing experience fueled her determination to find comprehensive resources and support for her family and a relentless commitment to make sure feeding, something so fundamental to every child’s overall well-being and survival, will never be disregarded. Without a clear path, Shannon’s passion and ingenuity inspired Feeding Matters as a movement to fill an unmet need and create a world where all children with pediatric feeding disorder thrive.
During her 10 year tenure as Board Chair, Shannon’s dedication and vision resulted in significant progress in the field, including:
- Inception of the Infant and Child Feeding Questionnaire by bringing together international feeding experts to form the original Medical Professional Council, now the PFD Alliance.
- The creation of a nationwide online platform for family advice, resources, support, and a virtual learning center for the healthcare community.
- The vision for a universally accepted definition and identity which lead to the groundbreaking January 2019 publication of “Pediatric Feeding Disorder: Consensus Definition and Conceptual Framework.”
Shannon’s triplets are now thriving young adults, and she has seen Feeding Matters continue to cement itself as the world’s premier organization tackling pediatric feeding disorder. Over the past few years, she has been working with the Board to transition her visionary role and now we want to also cement Shannon’s proud legacy. The Feeding Matters Board of Directors and leadership is excited to name Shannon as our first Emeritus Board Member, a role that will see us continue to leverage her leadership and passion while also lighting the way for innovative new ideas.
Shannon says, “The best thing about founding an organization is not starting it, but rather seeing it thrive 20 and 30 years later and that is what I want more than anything because I know the best is yet to come.” This dedication is the reason Feeding Matters is at the forefront almost 15 years later.
“Shannon Goldwater’s unwavering commitment to Feeding Matters has proved truly invaluable to our success. From countless hours on storytelling and strategy to the innumerable resources we’ve been able to bring to our families because of her… Shannon has been the biggest supporter of our work and we are not only thankful, but excited for her to continue in this role.” -Rhonda Anderson, RN, DNSC(H) FAAN, FACHE, Board Chair.
Please join us in celebrating Shannon by:
A single swallow requires the use of 26 muscles and 6 cranial nerves working in perfect harmony to move food and liquid through the body. When one or more pieces of the feeding puzzle are missing, out of order, or unclear, infants and children can have difficulty eating and drinking.
Children with pediatric feeding disorder (PFD) are more than fussy babies or picky eaters. For them, taking a single bite of food may be painful, frightening, or even impossible. As a result, they may severely limit their food choices or refuse food altogether, preventing them from getting the nutrition they need.
Applying the US Census Bureau’s 2017 population reports, early findings estimate that more than 2.3 million children under the age of 5 experience severe pediatric feeding disorder in the United States each year. Additional reports estimate that up to 25% of developmentally typical children and up to 80% of those with developmental disabilities have feeding problems.
Yet, there had been no studies to quantify the assorted costs, medical and otherwise, incurred by families navigating PFD. PFD is defined as impaired oral intake that is not age-appropriate, and is associated with medical, nutritional, feeding skill, and/or psychosocial dysfunction.
Feeding Matters’ Economic Impact Study identifies the economic burden of PFD on families who have insurance. From medicines, supplies, and expert childcare to specialized education, travel to appointments, and lost time, managing PFD can come with significant economic costs to families. Furthermore, parents and caregivers – herein referred to as “caregivers” – may experience lost or decreased income due to time required for PFD care. This study describes those costs.