Category: News & Events

Recently, Feeding Matters has been working closely with the Arizona Women, Infants, and Children (WIC) program. WIC is the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) which provides US federal grants to states for supplemental foods, health care referrals, and nutrition education for low-income pregnant, breastfeeding, and non-breastfeeding postpartum women, and to infants and children up to age 5 who are found to be at nutritional risk.

We are excited to share that as a result of our relationship with Arizona WIC, the nutrition coordinators and directors, who are the front line folks supporting families eligible for this program, have been trained on pediatric feeding disorder (PFD). Specifically, Arizona WIC coordinators and directors are trained on the PFD Co-Morbidity and WIC Risk Code spreadsheet so that any time one of them uses one of the codes associated with PFD, they will be prompted to refer the family to Feeding Matters and our Infant and Child Feeding Questionnaire. For example, if a child eligible for Arizona WIC is noted as having a genetic or congenital condition, they would be referred to Feeding Matters, specifically to our questionnaire to dig in deeper on their child’s feeding and have a source of support through us.

“This collaboration between the Arizona WIC Program and Feeding Matters ensures that children who have a known condition that often co-occurs with pediatric feeding disorder are more easily identified, identified quickly, and are referred to Feeding Matters to get the support they need.”
Brittany Howard, MS, RDN, CLC (WIC Nutrition Services Administrator)

The collaboration does not end there. They have also added Feeding Matters as a resource to their online education courses that they offer to all of their staff.

We know that PFD impacts one in 37 children under the age of five in the United States and are confident that this partnership will lead to earlier identification and intervention of children with PFD.

We are excited about all we have accomplished in 2022 and look forward to a year of continuing to advocate for children with pediatric feeding disorder (PFD) in 2023. As you have heard us share before, it is important to celebrate milestones and successes, so we bring you this list of accomplishments that we are proud of from this year.

• Hosted our 9th virtual International Pediatric Feeding Disorder Conference in April with over 1,200 individuals in over 30 countries in attendance. This year’s conference included an amazing keynote from Dr. Scott Berns and the first ever Shannon Goldwater Family Education Forum.
• Launched the PFD Alliance app, a space for families, healthcare professionals, and community members to connect around pediatric feeding disorder.
• Initiated our Arizona Grassroots Outreach, Education, and Support Initiative which allows us to go deeper into one of our target markets (Arizona) while also pursuing our national advocacy agenda.
• Began developing our new strategic plan with a focus on growing awareness of PFD to ensure this often-silent condition becomes a well-known name within the general public.
• Launched the Formula Shortage Resource Page to combat the growing need of our community to gain access to vetted information about formula during the shortage crisis. Many children with PFD need specialty formula and therefore this crisis especially impacted our families. We remain committed to ensuring families get the access they need to life saving nutrition.
• Featured in a national publications sharing Feeding Matters resources on the new diagnostic codes for PFD, including moms.com, lifehacker.com, and insider.com.
• Completed the first national and international look at which providers are treating PFD and their efficacy level. This is a first step in being able to influence best practices and build a higher quality cohort of treatment professionals. We are now embarking on two additional research projects including a long-term follow-up project on feeding treatment and several national focus group projects for families and professionals.
• Participated in the Patients and Providers for the Medical Nutrition Equity Act Coalition, which advocates at the federal government level to ensure families receive coverage for life-saving nutrition.
• Continued our grassroots outreach and growth by launching Community Roundtables to gather feeding-focused individuals to discuss how to grow awareness of PFD in local communities.
• Re-Launched the Family Assistance Program funding $10,000 to 4 families. One recipient said: “Thank you so much! This really means a lot to our entire family. It feels like coming up for a breath of air after being under water for a while. I can’t say this enough- THANK YOU!”

These accomplishments are exciting on the journey forward to create a world where children with PFD will thrive. While this list is a summary of success for which Feeding Matters is quite proud, what it doesn’t show is the immense amount of work that goes into making these occur. There is a team of individuals at Feeding Matters who dedicate their daily working lives to supporting families, educating professionals, and identifying system changes that will improve outcomes for children with PFD. But it is not only these passionate individuals who deserve recognition and accolades for these efforts. This list also encompasses the incredible community of volunteers, leaders, families, professionals, community members, donors, and advocates out there. Achievements as an advocacy organization are not done solo.

We are looking forward to 2023 to continue our efforts and specifically focus on:

• Quality content and support for families including webinars, and adapting our family support program to better include a trauma informed lens
• Educational offerings for professionals including webinars, infographics, and greater social media influence to reach more people
• Advocating about Early Intervention to include a better focus on feeding
• Advocating for more research around PFD – especially research that includes families and research within the community

Dear Feeding Matters Supporters,

It is with great pleasure that I announce Feeding Matters has selected Ron Coleman as the 2022 Visionary Award recipient. This award has been established by Feeding Matters’ Founder and Emeritus Board Member, Shannon Goldwater, to recognize individuals who have exhibited passion and commitment to help further advances in pediatric feeding disorder.

Ron Coleman and the Ingebritson Foundation have been integral supporters of Feeding Matters from its inception and are cornerstones to the success Feeding Matters has seen to date. The Ingebritson Foundation has focused on serving organizations who assist the most vulnerable including a focus on children’s causes. Those efforts led them to become deeply acquainted with and strong initial supporters of Feeding Matters during its infancy stages. Ron was a leader, supporter, and strategic thought partner for Shannon Goldwater as well as the organization’s founding CEO, Chris Linn. This connection continues to this day and has only strengthened over the past 15 years.

The selection committee for the Visionary Award is a group of community leaders who annually select and honor individuals who are exemplary leaders, community servants and most importantly, who have been instrumental in contributing to the work Feeding Matters is doing to ensure a world in which children with pediatric feeding disorder thrive.

As a past recipient of the Visionary Award and Board Member of the Ingebritson Foundation, I have seen firsthand Ron’s dedication to his community and support of causes like Feeding Matters and I am honored to present this award to Ron Coleman. This award gives all of us an opportunity to honor Ron Coleman for the community hero he is.

Ron Coleman will be honored as part of the Feeding Matters’ 10th Annual Community event, held virtually, November 4, 2022. The event attracts 800+ guests, including families impacted by pediatric feeding disorder (PFD), business and community leaders, sponsors, executives, politicians, and healthcare professionals who serve children with PFD.

The event is free to attend with a call for donations. Proceeds from the event benefit Feeding Matters and its mission to further advances in pediatric feeding disorder by accelerating identification, igniting research, and promoting collaborative care for children and families.

You can help make this honor memorable for Ron by attending the event. If you are unable to attend, I would encourage you to consider making a donation in support of Ron’s achievement.

Thank you for your support and we look forward to seeing you at the 2022 Feeding Matters Annual Community event.

Sincerely,

Joan Lowell
2018 Feeding Matters Visionary Award Recipient

Dear Friends of Feeding Matters,

A year ago today, a pediatric feeding disorder (PFD) milestone was met that will be life-changing for generations to come. On Oct 1, 2021, pediatric feeding disorder was officially included in the US diagnostic manual (learn more here), authorized by the Centers for Disease Control and Prevention (CDC) and on that very same day, the world had its first official diagnosis of PFD.

As we reflect on what this last year has brought for the PFD community, we celebrate the increased recognition of pediatric feeding disorder and validation that this code brings for families and professionals. But we know there is still so much work to do. Insurance companies still need the education on what PFD entails and the best way to support families who face this disorder. Pediatricians who weren’t taught about feeding still need support with early identification and knowing how to refer to qualified providers. We are moving the needle on these tough challenges, but changing the structure of medical care and medical professional education takes time.

Today, we celebrate PFD’s first “birthday” and keep that excitement near as we continue the long fight ahead. We have made real, lasting change, and that will continue as we evolve the system of care for children and families.

Best wishes,

Jaclyn Pederson, MHI
CEO

 

This will be my last update for 2022 as I will be going out on maternity leave next month. While I’m out and feeding (and playing with and snuggling!) my new little one, we’ll have some of our leadership and families share their experiences with all of you. 

Meet Elizabeth Goodman, mother to Elliot, and 2022 Virtual Community Event Honorary Chair. Learn more about the event and how to register here.

Early in my pregnancy with Elliot, I found out I had severe IUGR (Intrauterine growth restriction). As a result, I was closely monitored and had to undergo an early scheduled c-section. It was determined that she needed to come out at exactly 37 weeks. She was born healthy but at a very low birth weight of 4.14 lbs, which was less than 1st percentile.

During her first year, Elliot had no issues with feeding. She breastfed and then transitioned to solids like I had come to expect for her feeding journey. Right at year 1, she started refusing all solids. We didn’t understand why or what was going on. My mind initially went to Autism because she seemed to have gross motor skill and speech delays. Our pediatrician dismissed my concerns. He said some kids are just picky eaters. I did some research on my own and enrolled in a two-year evaluation at local organization for Autism and early childhood development. It was advised that Elliot had gross motor skill and speech delays and we were referred to the children’s hospital’s developmental pediatrician and outpatient rehab.

The Developmental Pediatrician ruled out Autism and diagnosed Ellie with hypotonia and sensory processing disorder. Throughout all of this, I was desperate for help with feeding and didn’t know where to find it. Her diet during this time consisted of milk, yogurt, and limited purees. We started feeding therapy as part of her overall Occupational Therapy, but it didn’t seem to be helping. Elliot would only eat a handful of solids. I was worried about her nutrition. Every day I struggled with what to feed her and how to get energy into her growing body. Every day I felt like a failure.

She slowly started accepting a few solids. I was scared to give her non-accepted foods for fear that she would refuse to eat. I lived in fear of feeding time. I was desperate every single day to be able to give her the nutrition she needed. She was no longer on the growth chart.

It was very difficult for me, a healthcare attorney and lobbyist with resources, to navigate the confusing web of finding a diagnoses and treatment. This always reminds me that others are probably struggling even more to get access and figure out what is going wrong. We have to find ways to make treatment more accessible and available to marginalized and underserved populations.

After a lot of research and referrals, I finally started seeing a pediatric gastroenterologist at the local children’s hospital. She was the first doctor to listen to me, believe me, and help me find meaningful solutions to feeding. She prescribed a nutritional supplement and Elliot’s weight started increasing. She was back on the growth chart and for the first time I felt hope.

We were then connected to Feeding Matters. At Feeding Matters, I found solace to know that I wasn’t alone. It wasn’t just me, it wasn’t my fault, and there were resources available. Feeding Matters connected me with a pediatric nutritionist and a pediatric psychologist, who we still see today. I also got connected to a new feeding therapist.

Elliot is now almost 8. She’s 30th percentile for weight and 70th percentile for height. We still participate in feeding therapy and have made so much progress. She now eats lots of fruits, grains, dairy options, and…BACON! She loves bacon and we go through several packages a week. Can you blame her? It remains the only meat product but adding a single meat product was an enormous hurdle as it was her biggest aversion. Sometimes she lets us add spinach into smoothies. Previously, she would stealthily sniff out a single morsel of veggie we attempted to incorporate into anything. And while her growth continues to be supported by some nutritional supplements, I can now see a future where we won’t need it for long. For me, this is huge.

With the help of Feeding Matters and the incredible providers who listened, believed, provided a safe space, and helped us find solutions, we have made incredible progress and are incredibly grateful. I am honored to chair the 10th Annual Community Virtual Event to help raise awareness, funds, and hope for families with pediatric feeding disorder.

Thank you for celebrating PFD Awareness Month with us in May! View the 2022 Awareness Month Report to see our reach. We look forward to celebrating again with you next year.       View the full report>>

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.

Resources
NPA Guidelines
NICU to Home

We are pleased to share a message from the keynote speaker for the 2022 International Pediatric Feeding Disorder Conference (IPFDC). Learn more about the conference and register today.

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.  

Best wishes,

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.

Register for the event or make a gift in Jim and Jo-Ann’s honor today!