Our mission is twofold. First, we would like to help other parents by sharing practical experience tube-feeding infants and children. Secondly, we would like to raise positive awareness of tube feeding so that families have the support they need.
The success of this effort relies heavily on the many parents who have shared their stories, knowledge, and support.
Feeding Tube Awareness was founded in 2010 to support parents of children who are tube-fed, while raising positive awareness of tube feeding as a lifesaving medical intervention. We are a 501(c)(3) charitable organization. Our organization is run 100% by exceptional parent volunteers who combine their personal experience and professional knowledge.
This website is dedicated to providing pragmatic information for parents and caregivers on handling every aspect of tube feeding and navigating day-to-day life with a child who is tube-fed. Our education materials are written in lay terms by those with personal experience. They are reviewed by medical professionals, and have been distributed by hundreds of children’s hospitals, medical practices, and medical supply companies.
Tube feeding is often misunderstood, and parents can face negativity as a consequence. Hundreds of thousands of infants and children are able to live, grow, and thrive because of tube feeding. Parents are not alone, even though they can feel they are. Our Facebook page serves as a question and answer forum, a place to share information and resources, as well as connect with others in similar situations. Tens of thousands of parents, caregivers, tube feeders and supporters follow the page and engage in discussion.
The organization is changing the dialogue on tube feeding to focus on the positive benefits of getting nutrition support. The group’s annual Feeding Tube Awareness Week®, held the second week of February, has gained the support of news media, online media, corporations, and organizations focused on tube feeding. The week focuses on educating the broader public, promoting the positive benefits of tube feeding, and sharing personal experiences. Feeding Tube Awareness Week® unifies and strengthens the community.
Increasingly, the Feeding Tube Awareness Foundation is partnering with clinical organizations, product manufacturers, and service providers to tackle issues that are important to the pediatric tube feeding community.
History of the Feeding Tube Awareness Foundation
In August 2008, Traci Nagy heard her 8-week-old son’s doctor utter two words that simultaneously struck fear and relief into her heart: feeding tube. Prior to that day, her only point of reference for feeding tubes was tragic end-of-life stories that hit the mainstream media. Now she found herself being thrown into the world of tube feeding, which she quickly learned did not necessarily equate with the end of life. With nowhere to turn for moral support as she navigated through months of testing, hospital stays, and daily life with a child who had a feeding tube, Traci yearned for a way to connect with others who could relate to what she was going through.
The journey was lonely, but was made more difficult by labels like “failure to thrive,” well-intentioned but misguided advice from friends and family, and the strangers who stared at what was obviously a medical device taped to her infant son’s cheek.
In the midst of all the negativity she felt coming from those around her, she saw what tube feeding was truly about. It was literally saving her son’s life. Not only did it keep him alive, but it allowed him to grow, develop and thrive. This new understanding of what tube feeding could do for a child who struggled to eat ignited a new passion in Traci, and a desire to show the world that the general perception of feeding tubes was wrong.
In an effort to try and share the positive side of tube feeding with the world, Traci first started an online campaign to get a tube fed child on Sesame Street. Although that effort did not produce the desired result, it didn’t deter her from pushing forward in her efforts to rebrand the feeding tube as a life-saving medical device and increase awareness in order to change public perception. In October 2010, Traci came up with the idea to hold a Feeding Tube Awareness Week. She posted her idea on the My MIC-KEY facebook page and they liked it. With that, the Feeding Tube Awareness Foundation started to take shape.
Traci got to work building an organization that could support Feeding Tube Awareness Week. She built a website and started a Facebook page. Many parents from the Babycenter group, Babies and Children with a Feeding Tube, lent their stories, tips and expertise. Making the website a comprehensive storehouse for all things pediatric tube feeding was successful only because of the collective willingness of experienced parents to share their knowledge.
A board of directors was established and a volunteer staff comprised of other parents of children with feeding tubes began supporting Traci in carrying out the Foundation’s mission. Parents began flocking to the Facebook page in droves, thrilled to find support in the form of other parents who understood what life with a feeding tube was like.
In 2011, the first official Feeding Tube Awareness Week was held, and the “I heart a Tubie” and “Super Tubie” merchandise was launched. Since then, the expansion of the Feeding Tube Awareness Foundation has been moving steadily forward with the mission to provide practical information on the day-to-day life with a feeding tube, and to raise positive awareness of tube feeding so that ALL who rely on feeding tubes can get the support they need. The website is continually expanding to include any and all information that parents of children with feeding tubes need.
The Feeding Tube Awareness Facebook page is the largest online support group for pediatric tube feeding in the world with more than 50,000 “fans” and counting. Volunteer staff members dedicate countless hours each week to answering every question asked on the Facebook page, constantly striving to improve the quality and quantity of information provided on the website, and building relationships with providers of services that are vital to those with feeding tubes. All of this is done while balancing careers, families, educational pursuits, and caring for their own medically complex children.
As a parent-to-parent organization, the FTA staff truly understands what life is like with medically complex children and as such, understands the value of public awareness of tube feeding. Greater awareness means that parents find the support they need more quickly and feel less alone and scared. It means that family, friends and strangers have more compassion and understanding. It changes public opinion and by doing so, it changes the experience of tube feeding. Awareness matters in very real and tangible ways.
Staff and Board
Traci Nagy, MAFounder and Executive Director; Board Member
Traci Nagy founded the organization in October, 2010. Traci has worked in market research and strategic communications for two decades. She created Feeding Tube Awareness Week® to educate the public and change perceptions of tube feeding. She is the 2013 winner of the Lyn Howard Nutrition Support Consumer Advocacy Award from the American Society of Parenteral and Enteral Nutrition. She is a member of A.S.P.E.N and has contributed to their Pediatric Section Newsletter and blog. She holds a Masters in Political Science, with a specialization in Political Psychology. She routinely speaks to industry and clinical audiences about pediatric tube feeding.
Brandis Goodman, BSDirector of Parent Education; Board Member
Brandis joined FTAF in March, 2012. Her blog “Feeding Raya” that chronicles her family’s journey with tube feeding was named a Top Special Needs Site. Feeding Raya is cited by the Feeding Tube Awareness Foundation, hospitals, clinicians and medical supply companies. Dozens of excerpts from Feeding Raya have been used in education settings, either by professors or students in health profession programs. Brandis is co-admin of the FTAF Facebook page, as well as a main contributor to the organization’s parent education resources. Brandis has a BS in Healthcare Administration and will be applying to nursing school in the near future. She routinely speaks to industry and clinical audiences about pediatric tube feeding.
Stephanie McDowell, MADirector of Resources
Stephanie has been involved with FTA since its inception in 2010. Her strengths in research and fostering collaboration allow her to connect parents of special needs children with valuable resources, tools, and information. Her creative approaches to problem-solving also support the operation and strategic direction of the organization. Stephanie worked in admissions and planning, and academic advising at the graduate and undergraduate levels of several universities. She has a Master’s degree in Counseling.
Susan Agrawal, PhDDirector of Research and Content Development; Board Member
Susan joined FTAF in 2011. Susan brings her vast knowledge, editing skills, and ability to communicate what is medically complex in lay terms to FTAF’s publications and websites. Susan has specialized knowledge relating to medical technology and special needs advocacy through her late daughter, whose progressive medical condition touched virtually every organ system. Susan founded Complex Child Magazine in 2008, which provides medical information, along with personal experiences, in simple language that other parents can understand. Complex Child also manages a website that provides information on waiver programs in each state. Susan is also an advocate in Illinois, fighting for legislation to help children who are medically fragile and technology dependent. She holds a Ph.D. in music studies/interdisciplinary humanities, and taught at a major university.