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Volunteer Spotlight: Dina Barnes

Published by Feeding Matters on Oct 25, 2019

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 Dina Barnes.

Dina has been a volunteer with Feeding Matters since June of 2018. She is always willing to help, whether it’s at our annual community luncheon or with special projects, including coordinating all of the 2018 and 2019 Colten Cowell Foundation Cave Experiences and represents our organization at the events.

Tell us a little bit about yourself!
I live in Chandler with my husband, Tom, son Jackson, and playful dog Miley. Our daughter, Kendal, is currently a senior at ASU, living in Tempe and graduating in December. Jackson is a sophomore in high school. I was a teacher for 25 years, and just last year decided to take a break from full time teaching and get a “regular” job. ???? This choice has given me time to volunteer, work with kids one on one through tutoring, and spend more time with my family.

How long have you been a volunteer with Feeding Matters?
I have been volunteering for just about a year. I love it!

In which volunteer activities have you participated?
I help to coordinate the Colten Cowell Foundation Cave Experiences for Feeding Matters’ families, assisted at the 2018 luncheon, and have attended several community outreach events.

What motivated you to become involved?
I was invited to the 2017 luncheon by a friend, not really aware of what Feeding Matters was all about. After hearing the speakers I was absolutely awestruck…I knew I HAD to be involved in some way.

What has been your favorite part of volunteering with Feeding Matters?
There are so many amazing people working at Feeding Matters, I’m honored to have met them and have the opportunity to work with them.

What sets Feeding Matters’ apart from other organizations?
Feeding Matters fosters such an atmosphere of helping and caring…from the CEO all the way down to the volunteers. Everyone works so well together and are all working towards a common goal – to help families.

Volunteer Spotlight: Melissa Knight

Published by Feeding Matters on Nov 08, 2019

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 Melissa Knight.

Melissa is one of our Power of Two family coaches in Ohio. She started volunteering back in 2014 as a regular contributor to our blog where she shared her journey with her daughters and brought so many families relief and hope.

Tell us a little bit about yourself!
I am married and a stay at home mom and homeschool teacher. I was blessed with two amazing girls. I enjoy spending time with my family, watching movies, reading, cooking, arts and crafts, exercising, and teaching.

How long have you been a volunteer with Feeding Matters?
I have been a volunteer with Feeding Matters since 2014.


In which volunteer activities have you participated?
I started volunteering by writing blogs for Feeding Matters. Once some of the feeding challenges settled down in our family, I wanted to do more and I became a Power of Two coach.

What motivated you to become involved?
I was motivated to become involved with Feeding Matters because my life revolved around trying to feed my children for many years. Both of my daughters had pediatric feeding disorder, starting in infancy and continuing for at least six years each. I saw firsthand how every single day was a struggle and how people outside of our family did not understand. From that moment forward, I knew I wanted to help other parents in similar situations. I also like to help families specifically, dealing with gastroparesis as well as cyclic vomiting syndrome since those issues are close to my heart.

What has been your favorite part of volunteering with Feeding Matters?
My favorite part of being a Power of Two coach is forming a bond with the family I am coaching. Some of the families have such similar stories like our family and we form this unspoken bond of understanding one another without even finishing sentences. We both know what it is like to live this struggle and I like to show that there is hope and a purpose to all of this. I try to be a beam of light in the darkness they are feeling.

What sets Feeding Matters apart from other organizations?
Feeding Matters is a wonderful organization. I think what sets them apart from other organizations is the passion they have for making a difference. From the very top, the lovely ladies that formed Feeding Matters were touched personally by pediatric feeding disorder and it shines through in the challenging jobs they have to bring awareness. Everyone I have ever worked with has enthusiasm and passion like I have never seen before. They love their jobs and therefore they make a difference. No matter what the pediatric feeding disorder involves, Feeding Matters has so many resources to help families find the support they need.

Volunteer Spotlight: Hayley Estrem

Published by Feeding Matters on Apr 10, 2019

It is with a 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 disorders will thrive.

As a registered nurse, Hayley’s primary research interests began with a desire to improve family-centered care for children with feeding problems and developmental disabilities. Since 2009, Hayley has been a member of UNC’s Feeding Flock, an interdisciplinary research team with a mission to partner with families to nurture young children with feeding difficulties. Hayley volunteers her time with Feeding Matters serving on committees dedicated to creating the educational program for our International Pediatric Feeding Disorder Conference and Poster Session.

Tell us a little bit about yourself!

I am originally from Troy, Missouri and grew up on a lovely farm with my grandparents as neighbors. I got my bachelor’s degree in Nursing in 2002 and was an RN in acute care adult settings for about eight years. Now, I have a PhD in Nursing so I get to do a combination of teaching and research that I find very satisfying. I have three boys, 12, 9, and 6 years old. We moved to the east coast in Wilmington, NC, just about 2 months before hurricane Florence. We were very fortunate that all was well with our home, and while repairs and recovery will be ongoing, it is a beautiful and resilient community! We are glad to be part of it.

How long have you been a volunteer with Feeding Matters?

Since 2011.

In which volunteer activities have you participated?

I was a parent volunteer member of the Treatment and Research committee in 2011. Later, after I had finished my doctorate and had experience in research, I was happy to be part of the planning committee for the first poster session at the 2017 conference, and was a member of the poster session committee for the 2019 conference as well as serving on the 2019 conference planning committee. Recently I joined the PFD Alliance as the Research Pillar Chair.

What motivated you to become involved with Feeding Matters?

I changed my career path when my son was born with serious feeding difficulty and a rare chromosome disorder. It was all pretty hard. There just weren’t resources that we needed to guide us. We struggled for a long time, and eventually found some of what we needed for my son when he was 2 years old (in 2008). Soon after that, I learned about Feeding Matters, and I also started my PhD program to do research with feeding and family care that would help other children and families to not have to experience the struggle. I got involved with Feeding Matters because I felt I shared the mission, and I appreciated that they were an organization started by parents. It is about the lived experience of caring for these infants and children day-to-day, as part of a family that has some other things to accomplish too. So, let’s aim for success in the family setting, with success defined by family members in partnership with healthcare providers!

What has been your favorite part of volunteering with Feeding Matters?

Interdisciplinary work and resources that are gathered. Seeing how Feeding Matters can help families.

What sets Feeding Matters apart from other organizations?

It brings professionals from all the disciplines involved with feeding care together in a place where parents and families have a strong voice.

VOLUNTEER APPRECIATION WEEK: MEET ELEANOR BEATTY

Published by Feeding Matters on Apr 16, 2018

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.

VOLUNTEER APPRECIATION WEEK: MEET RANKICA UZELEC

Published by Feeding Matters on Apr 17, 2018

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.

VOLUNTEER APPRECIATION WEEK: MEET ELIZABETH SUAREZ

Published by Feeding Matters on Apr 18, 2018

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.

VOLUNTEER APPRECIATION WEEK: MEET GARRETT BARNES

Published by Feeding Matters on Apr 20, 2018

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.

VOLUNTEER APPRECIATION WEEK: MEET NATALIE THOMAS

Published by Feeding Matters on Apr 21, 2018

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.

VOLUNTEER SPOTLIGHT: MARK GORIS

Published by Feeding Matters on May 28, 2018

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.

VOLUNTEER SPOTLIGHT: ANDREA WALLACE

Published by Feeding Matters on Jun 18, 2018

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.

Andrea Wallace is one of our parent coaches in Ashburn, VA. She lives with her husband, 2 children and rescue dog, Ringo. She makes her daughter, Penny, a blenderized diet and has shared her recipes on our resource library so other families can utilize it.

1. Tell us a little bit about yourself.
I am a stay at home mom of two phenomenal children. My son started his first year of kindergarten and absolutely loves it. My daughter is a happy two year old who enjoys dance class and laughing with her big brother. I love to spend time outside running, hiking, walking our dog, and being with my family.

2. How long have you been a volunteer with Feeding Matters?
I am uncertain of my exact start date but I would guess 6-8 months or so. I have no plans to leave anytime soon since I love it!!

3. In which volunteer activities have you participated?
I am a Power of Two parent mentor.

4. What motivated you to become involved?
My daughter has struggled with feeding issues her whole life and she has a feeding tube to help support her with her nutrition. I am passionate about helping others who love someone with a pediatric feeding disorder so that they feel supported and connected with other parents who understand how they feel.

5. What has been your favorite part of volunteering with Feeding Matters?
I enjoy connecting with families and hearing their stories of strength, compassion, and complete dedication for their children. All the families I have worked with are absolutely amazing.

6. In your opinion, what sets Feeding Matters apart from other organizations?
Feeding Matters not only provides families with educational support they also support families with emotional support. The Power of Two parent mentor program serves to support family members of children with pediatric feeding disorder in an emotional way. Once I joined the Feeding Matters team, I felt connected and supported because so many individuals involved in the organization have a personal story that directly relates to the cause.