Author: Feeding Matters

First established in 1974 through presidential proclamation by Richard Nixon, National Volunteer Week is an annual celebration “to recognize and thank volunteers who lend their time, talent, voice and support to causes they care about in their community. Their stories can serve to inspire others to find ways to take action that creates change.”

In honor of the 2018 National Volunteer Week, Feeding Matters would like to recognize several of our dedicated and committed volunteers.

Eleanor Beatty has been a volunteer with Feeding Matters since March of 2017. She is always willing to help us out, no matter what the project. She represents Feeding Matters with an energy and passion to help others.

1. How did you first get involved with Feeding Matters?
   
   I got involved after I moved to Arizona from Texas at the end of 2016. I knew I wanted to get involved in an organization that I was passionate about the mission and vision. I immediately connected with Feeding Matters and emailed Heidi right away about how I could get involved and help.
   
2. What is your most prized memory of volunteering with Feeding Matters?
   
   Recently while volunteering at a 5K race in Tempe we had the chance to interact with families and health care professionals who were participating in the race. It was a smaller event but 90% of the people there had heard of Feeding Matters, had referred families to Feeding Matters, or had been positively impacted by the programs/information of Feeding Matters. A common phrase we heard was “Oh I know you guys! You do great work!” I felt so proud to volunteer for an organization that has such a positive impact in the community and is able to build such strong connections with various populations.
   
3. What is your favorite part of volunteering with Feeding Matters?
   
   My favorite part is being able to share all the wide range of services and benefits of Feeding Matters. Whenever I am able to share about the resources and education provided I see how blown away people are and how encouraged they are knowing there is such a phenomenal organization in our community. This was all reinforced recently when I met a sorority sister who had graduated four years ahead of me at a networking event and had a company called Feeding Littles (she is an RD and her partner is a speech pathologist). We got chatting and I mentioned I volunteer for Feeding Matters and she immediately sang the praises of the work done.
   
4. What does being involved with Feeding Matters mean to you?
   
   It means being part of something bigger than myself.
   
5. In your opinion, how does volunteering with Feeding Matters differ from other organizations?
   
   What makes Feeding Matters different is the people. The people who are employees are always so kind, are passionate about the work they do, and are determined to continue Feeding Matters growth and impact. The fellow volunteers are always so friendly, are great to spend time with, and are just as passionate about the mission. The health care professionals are always so grateful for the education and lastly the families who utilize Feeding Matters are always so thankful and appreciative. You can’t help but be proud to be associated with such a wonderful organization!
   
6. What is your biggest hope for families navigating pediatric feeding disorder?
   
   My biggest hope is that they know they are never alone. They will always have the support of the volunteers, the employees, and the community. We are all here for them on their journey!

To join Feeding Matters’ fight to create a world in which children with pediatric feeding disorder will thrive, visit feedingmatters.org/volunteer.

First established in 1974 through presidential proclamation by Richard Nixon, National Volunteer Week is an annual celebration “to recognize and thank volunteers who lend their time, talent, voice and support to causes they care about in their community. Their stories can serve to inspire others to find ways to take action that creates change.”

In honor of the 2018 National Volunteer Week, Feeding Matters would like to recognize several of our dedicated and committed volunteers.

Rankica Uzelac has been a volunteer with Feeding Matters since 2012. She has been a parent coach since the beginning and in 2015 became a member of the Family Advisory Council and in 2016, became a Community Ambassador. Renee is passionate about both helping families and educating professionals.

1. How did you first get involved with Feeding Matters?
   
   My son attended a feeding clinic and was encouraged by the director to get involved.
   
2. What is your most prized memory of volunteering with Feeding Matters?
   
   Helping other families navigate through their journey.
   
3. What is your favorite part of volunteering with Feeding Matters?
   
   The contact with families that turn into friendships.
   
4. What does being involved with Feeding Matters mean to you?
   
   If I can lessen the burden in any way, shape or form, I feel happy that no one is on this journey alone.
   
5. In your opinion, how does volunteering with Feeding Matters differ from other organizations?
   
   The commitment to families and the outreach in the medical community are equally important and go hand in hand.
   
6. What is your biggest hope for families navigating pediatric feeding disorder?
   
   That it is recognized as a standalone diagnosis and that clinicians receive the proper continuing education to support families.

To join Feeding Matters’ fight to create a world in which children with pediatric feeding disorder will thrive, visit feedingmatters.org/volunteer.

First established in 1974 through presidential proclamation by Richard Nixon, National Volunteer Week is an annual celebration “to recognize and thank volunteers who lend their time, talent, voice and support to causes they care about in their community. Their stories can serve to inspire others to find ways to take action that creates change.”

In honor of the 2018 National Volunteer Week, Feeding Matters would like to recognize several of our dedicated and committed volunteers.

Elizabeth Suarez has been one of our Spanish speaking volunteers since 2012. She has helped us with translating our website for our Spanish speaking community as well as helping out at events.

1. How did you first get involved with Feeding Matters?
   
   Working as a nanny for Shannon Goldwater’s triplets who have struggled to eat since they were born.
   
2. What is your most prized memory of volunteering with Feeding Matters?
   
   Listening to the testimonies of the families that Feeding Matters have helped and changed their lives.
   
3. What is your favorite part of volunteering with Feeding Matters?
   
   The contact with families that turn into friendships.
   
4. What does being involved with Feeding Matters mean to you?
   
   If I can lessen the burden in any way, shape or form, I feel happy that no one is on this journey alone.
   
5. In your opinion, how does volunteering with Feeding Matters differ from other organizations?
   
   The commitment to families and the outreach in the medical community are equally important and go hand in hand.
   
6. What is your biggest hope for families navigating pediatric feeding disorder?
   
   That it is recognized as a standalone diagnosis and that clinicians receive the proper continuing education to support families.

To join Feeding Matters’ fight to create a world in which children with pediatric feeding disorder will thrive, visit feedingmatters.org/volunteer.

First established in 1974 through presidential proclamation by Richard Nixon, National Volunteer Week is an annual celebration “to recognize and thank volunteers who lend their time, talent, voice and support to causes they care about in their community. Their stories can serve to inspire others to find ways to take action that creates change.”

In honor of the 2018 National Volunteer Week, Feeding Matters would like to recognize several of our dedicated and committed volunteers.

Garrett Barnes has been on the Family Advisory Council since 2016 and attended our Consortium meeting in 2017. One of our favorite videos is of Garrett and his daughter Lucy’s journey.

1. How did you first get involved with Feeding Matters?
   
   In desperation, with a kiddo vomiting several times a day, miserable meals, gagging when hearing us prep meals, we had nowhere to turn. I googled and googled and found Feeding Matters. From there, they helped me immediately and after that I asked how I can assist others and then became a volunteer.
   
2. What is your most prized memory of volunteering with Feeding Matters?
   
   At a luncheon, I got to tell my story and for a moment my tubie Lucy joined me on stage. Being asked to share at this event meant more to me than I feel anyone knows. I will advocate for pediatric feeding awareness at every opportunity and I always love the chance.
   
3. What is your favorite part of volunteering with Feeding Matters?
   
   The thought of being on the receiving end of a phone call or meeting from someone like me when I was desperate makes me very happy. If I can lighten the burden by being a support for a family who just learned their little one needs a tube or is struggling, I would drop everything to do it.
   
4. What does being involved with Feeding Matters mean to you?
   
   I am a passionate advocate for this organization. Shannon and Chris are role models to me. The fact that they allow me to be a part of their vision of increasing awareness to this issue is both humbling and an honor.
   
5. What is your biggest hope for families navigating pediatric feeding disorder?
   
   That they will be able to navigate the world of insurance and payments because with everything else on their plate, paying for services should not be the main subject of concern. The goal of assisting the kiddo should be their focus.

To join Feeding Matters’ fight to create a world in which children with pediatric feeding disorder will thrive, visit feedingmatters.org/volunteer.

First established in 1974 through presidential proclamation by Richard Nixon, National Volunteer Week is an annual celebration “to recognize and thank volunteers who lend their time, talent, voice and support to causes they care about in their community. Their stories can serve to inspire others to find ways to take action that creates change.”

In honor of the 2018 National Volunteer Week, Feeding Matters would like to recognize several of our dedicated and committed volunteers.

In the two years that Natalie has been with us, she has become a valued volunteer to many staff members thanks to her integrity, passion and respect for families navigating pediatric feeding disorder.

1. How did you first get involved with Feeding Matters?
   My mom is a nurse and does some work with children with PFDs. One day by chance, she told me about Feeding Matters. Our conversation sparked my interest, so I did some further research. I really admired the organization’s mission and principles, and I immediately applied to become a volunteer.

2. What is your most prized memory of volunteering with Feeding Matters?
   The best is yet to come! I have worked on a few different projects for Feeding Matters that are still underway. I’m excited to see the outcomes these projects will have for children with PFDs, and their families, once completed.

3. What is your favorite part of volunteering with Feeding Matters?
   My favorite part of volunteering is working with the incredible team at Feeding Matters! It is a pleasure to work with such enthusiastic, knowledgeable, and hard-working people.

4. What does being involved with Feeding Matters mean to you?
   It makes me happy to be a part of an effort to improve the well-being of my community, and to use my skill set to support Feeding Matters’ mission. I’m thankful for everything I’ve learned by being a volunteer for this awesome organization.

5. In your opinion, how does volunteering with Feeding Matters differ from other organizations?
   Something that strikes me again and again is how each team member I work with makes it a point to understand my personal interests and professional strengths when bringing me onto a project. They confer such value on every team member’s individuality, and have built such a strong organization because of it.

6. What is your biggest hope for families navigating pediatric feeding disorder?
   I sincerely hope that families navigating PFDs will see their children thrive, and experience continually improving visibility, education, and support from all professionals and care providers they work with.

To join Feeding Matters’ fight to create a world in which children with pediatric feeding disorder will thrive, visit feedingmatters.org/volunteer.

Every day, parents across the world struggle when their children are diagnosed with pediatric feeding disorder. Parents often feel helpless and it can be overwhelming to deal with questions like “which provider is best?”

“Feeding Matters has been such a big part of the feeding community. They have really done a great job advocating for families and creating resources for us as therapists and for families to really get a comprehensive look at PFDs,” says Amanda Hermann, a speech language pathologist. “Because each child’s feeding disorder will develop differently, you have to treat them all as an individual.”

Feeding Matters’ Coordinated Care Model examines the complexities of a child’s feeding disorder, focusing on the four key domains that significantly impact his or her lifelong well-being: medical, nutrition, feeding skill, and psychosocial.

• Medical: The act of eating is a complex task that involves the entire body and its organs working as one seamless unit. It takes 13 paired muscles (26 total) and six cranial nerves working in perfect harmony to move food and liquid from the mouth to the stomach. This process takes only seconds but is the single most complex and physically demanding task an infant will complete for the first few weeks, and even months, of life.
• Nutrition: Nutrition is the foundation for growth and development. Whether your infant or child eats by mouth or through a feeding tube, good nutrition allows children to thrive. It directly affects a child’s brain activity and capabilities, fine and gross motor skill development, and overall health and wellness.
• Feeding Skill: Learning to eat skillfully and comfortably is rooted in the development of sensory and movement skills that make it possible for an infant or child to suck, swallow, bite, and chew. Feeding skills and abilities include the social, communication, and interactive skills that integrate with mealtime skills.
• Psychosocial: When children are struggling to eat, behavior is their way of communicating that something may not be working the way it should. It is also how they show their like or dislike for certain food. These behaviors can often leave family members and caregivers feeling confused and frustrated, impacting the parent–child relationship and the child’s thoughts and behaviors toward feeding.

When correctly diagnosed, overcoming feeding disorders is possible. The true concern lies with early identification and intervention. Together through collaborative care and the proper support system, pediatric feeding disorder can become manageable and treatable.

Feeding Matters is proud to offer families and professionals on-demand workshops through our online Knowledge Center. These workshops provide tips and tools on how to efficiently manage pediatric feeding disorder and other related, complex issues, including:

1. Common Feeding Hurdles in the Weeks and Months after Leaving the NICU
   In this 60 minute virtual workshop, Dr. Pamela Dodrill, PhD, CCC-SLP, presents about what NICU families can expect when having a child who has pediatric feeding disorder. This workshop is for families who have children with pediatric feeding disorder and the healthcare professionals who care for them. Dr. Dodrill has specialized in working with infants and children with feeding disorders for over 15 years. Pamela has a number of publications in this area, regularly presents at international scientific conferences, and teaches courses and workshops on managing pediatric feeding problems for students and practicing health professionals.
   
2. Fostering Collaborative Care: Parent and Provider Perspectives
   Listen to professionals from a feeding clinic talk about how the ICFQ can be used as an engagement tool to help identify potential pediatric feeding disorder and hear from a parent’s perspective on life after the NICU. From the provider perspective, Anais Cook, Caroline Duong and Dr. Andrew Chu join us from Texas Children’s Hospital Feeding Clinic. And with a very personal perspective, Ashley Collier participates in the conversation to discuss her journey with her daughter Macie, who was a 33 week preemie and struggled in the NICU to master suck/swallow/breathe.
   
3. Navigating the system: Coordinating Your Child’s Care
   overwhelming, the appointments can be endless, and the medications numerous and constantly changing. Navigating your way through doctors, programs, food, medications, and medical procedures is usually left in the hands of the primary caregiver “the parent.” Shannon Goldwater has over 14 years of experience with her triplets. This workshop will provide tips and tools on how to efficiently manage your child’s complex needs.
   
4. Planting a Seed Towards Self-Care
   In the event of an airplane emergency, one of the first rules they tell you to follow for your safety is to put your own oxygen mask on first before you assist anyone else. Because only when we help ourselves, do we have the ability to effectively help others. Often as caregivers this concept is difficult to practice. There is a mentality that you don’t have time to care for yourself and that your child’s care is more important than your own. This workshop will debunk misconceptions surrounding self-care and provide participants strategies for how to take time to nurture yourself in the midst of your busy schedule. It will be led by Heather Joy Magdelano, the founder of Journey into Joy, and mother of two children born 21 months apart with the same rare genetic syndrome and as a result both have struggled with feeding.
   
5. Setting Up For Feeding Success After the NICU
   The Feeding Matters Workshop, “Setting Up for Success After the NICU” presented by Dr. Kay Toomey is sure to help parents, caretakers and professionals living and working with children being discharged from the NICU to be as successful of eaters as possible. Dr. Toomey discusses how very complicated feeding babies is, as well as when and why children may begin to struggle with their feedings/eating across the first 2-3 years of their lives. At each developmental time point, Dr. Toomey suggests strategies for Setting Up Your Child For Success in order to begin them on the path of developing a healthy, lifelong relationship with food.
   

Look for a brand new virtual workshop coming in late May 2018! In Neonatal Nutrition: Improving Short and Long-Term Outcomes, Matthew Abrams, MD will discuss interventions from the moment babies are admitted to the NICU to their nutrition after discharge to optimize growth and nutrition and long term neurodevelopmental outcomes. Although we are still in the infancy of truly understanding the complexity of nutritional components and how to best provide them to premature infants, we have reasonable data that indicates that better nutrition results in better outcomes and less morbidities short and long term.

VISIT THE KNOWLEDGE CENTER

In recognition of National Eosinophil Awareness Week (NEAW), Feeding Matters welcomes guest contributor Mary Jo Strobel, executive director of American Partnership for Eosinophilic Disorders (APFED). A non-profit patient advocacy organization dedicated to patients and their families coping with eosinophil-associated diseases, APFED provides education and support services and funds peer-reviewed research through its Hope on the Horizon Research program. Mary Jo lives in Northern Virginia with her husband and two children. Her niece suffers from eosinophilic esophagitis.

This year, National Eosinophil Awareness Week (NEAW) is May 20-26. During this special week our patient community comes together to raise awareness of eosinophil-associated diseases and educate others about the impact of these conditions. Since being officially recognized by Congress in 2007, thanks to APFED’s advocacy efforts, NEAW has helped bring about a greater understanding of these rare, chronic, and emerging diseases.

Eosinophils are a type of white blood cell that play an important part of our immune system, helping us to fight off certain types of infections, such as parasites. Many different problems can cause high numbers of eosinophils in the blood including allergies (food and environmental), certain infections caused by parasites, eosinophil-associated gastrointestinal disorders, and other problems. When a person has elevated numbers of eosinophils in their digestive system, tissues, organs, and/or bloodstream, without a known cause, he or she may have an eosinophil-associated disease.

Eosinophilic gastrointestinal disorders (EGIDs) are distinct diseases affecting areas of the gastrointestinal tract: the esophagus, stomach, and small and/or large intestine. EGIDs are often driven by food triggers.

Symptoms of EGID may vary from one person to the next and may differ depending on age. Infants and toddlers often refuse their food or have trouble growing properly. School-age children may have recurring abdominal pain, trouble swallowing, or vomiting. Teens and adults will often experience difficulty swallowing or painful swallowing. Food may become stuck in their esophagus (impaction), causing a medical emergency.

Currently, there is no FDA-approved therapy to treat EGIDs. Symptoms are controlled by dietary restrictions and/or corticosteroids that are used off-label. Some patients have a severely restricted diet or must avoid the vast majority of foods and instead receive all of their nutrition from an elemental formula. Some patients are able to drink the formula, while others need a feeding tube.

Follow APFED all week as we continue to raise awareness for eosinophil-associated diseases and use hashtag #NEAW2018. We will also be posting giveaway offers and spearheading an action-oriented awareness campaigns on Facebook. Be sure to follow along!

* * *

If you have a child with pediatric feeding disorder, feeling overwhelmed is not unusual. Feeding Matters is committed to providing parents with the support and resources they need to deliver the best care to their children, including our parent-to-parent coaching program and on-demand knowledge center.

For more information or resources on eosinophil-associated diseases and the American Partnership for Eosinophilic Disorders, please visit apfed.org.

It is with deep appreciation for the time, commitment, and passion of our dedicated advocates and volunteers that Feeding Matters is launching a monthly Q & A series. They help with events, participate on committees, and coach in our Power of Two program. The advocate and volunteer spotlights will share 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.

Mark Goris is like family to Feeding Matters….perhaps it’s because his sister, Feeding Matters’ Senior Director of Programs and Strategic Initiatives Jaclyn Pedersen, recruited him 5 years ago and he has been a regular volunteer at every event since. When asked about “what has been your favorite part of volunteering with FM?”, his original reply was “The Food”. He knows us well!

1. Tell us a little bit about yourself.I am a 26 years old electrical engineer with my first out of college job at a helicopter company. I am always interested in learning new things. I love solving puzzles and/or problems.
   
2. How long have you been a volunteer with Feeding Matters?
   I have been a volunteer for about 4 years.
   
3. In which volunteer activities have you participated?
   Luncheon setups, helping relocate Feeding Matters to its new location, stuffing envelopes for informational purposes, facilitating the attendance of further education at the pediatric feeding conference.
   
4. What motivated you to become involved?
   My incredible sister, Jaclyn Pedersen. She became a part of an amazing organization that is helping parents across the country. Hearing her talk about her work, especially the passion behind it, was a big selling point. That is when I started to look into the work being done by the company. And the lives that they change.
   
5. What has been your favorite part of volunteering with Feeding Matters?
   The best part has to be the stories of success from the parents. How they talk about finally being able to feed their child and the fact that this organization was able to help facilitate it.
   
6. In your opinion, what sets Feeding Matters apart from other organizations?
   I would have to say the people within the organization. Yes, I am a little bit biased since my sister is such a crucial part of the organization, but that does not take away from the other incredible people that make up the Feeding Matters family. The keyword there is family. In every interaction with parents and children they are treated with respect and as if, they are family. That kind of work ethic is an incredible thing to have and definitely separates Feeding Matters from other organizations.
   

Created to transform the local systems of care in communities across the United States, Feeding Matters’ Advocacy and Early Intervention Model (AIM) brought together more than 28 community partners interested in establishing replicable norms for identification, early intervention, and healthcare reimbursement for children with pediatric feeding disorder.

Over the last 18 months, the Arizona AIM Task Force has been hard at work examining the needs of the local Arizona community and determining which of these local needs point to a greater demand from the feeding community at-large. The issues that arose during the community analysis included a lack of awareness on pediatric feeding disorder, the inability to access providers, and an inadequate pool of qualified providers.

With this in mind, the task force identified education and professional collaboration as high areas of need for the field.

To meet this need, Feeding Matters is launching its newest program – the Professional Collaborative. This mentoring program for medical professionals and clinicians in Maricopa County will feature curriculum and resources on pediatric feeding disorder, with the goal of eventually expanding the program nationally.

The Professional Collaborative aims to reduce medical risk and co-morbidities by increasing participation in meaningful life function necessary for health and wellness. This program will also reduce the economic stress of prolonged medical dependency, promote caregiver mental health, lower the risk of child neglect and injury, ensure access to high quality care, and decrease overall costs through efficient service delivery. Additional benefits from the formation of the Professional Collaborative include the following:

• Therapists will be able to utilize a local network for collaboration and expertise/advice.
• Referrals to the proper healthcare provider will be made more accurately and effectively, thereby decreasing waitlists for medically-fragile children.
• Enhanced collaboration through a highly-skilled cohort of medical professionals will enable enhanced care.

Interested in learning more about Feeding Matters Professional Collaborative? Register for our monthly healthcare professional newsletter or click here to vote on curriculum topics and submit your own ideas!