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Thursday, February 23, 2017

A post-CNW message for my fellow tubie mamas

This past weekend, I had the privilege to attend Clinical Nutrition Week in Orlando, Florida. The conference is put on by ASPEN (American Society of Parenteral and Enteral Nutrition). This was my 4th time attending as an exhibitor with Feeding Tube Awareness Foundation, alongside my friend and colleague and the founder of Feeding Tube Awareness Foundation, Traci. This one was extra special for me because I had the great honor of receiving the Lyn Howard Nutrition Support Consumer Advocacy Award. Of all the things I've done in my life, advocating for my daughter, our family, and others like us has been one of the most rewarding. I am grateful to be in a place where I can use my experiences to help others.

Speaking in front of a LOT of people very early in the morning

Me with the one and only Lyn Howard

When we attend conferences as exhibitors, we have a booth in the exhibit hall where those attending the conference can stop by and learn about our organization and what we do. Here's our booth from CNW:

And this is our friend Biff, whom we've had the pleasure of being stared at by at other conferences as well:
(I still think he looks more like a Desmond than a Biff.)

I realized this weekend as I was talking with hundreds of clinicians (GI doctors, surgeons, nurses, dietitians, and pharmacists) and industry professionals about the Feeding Tube Awareness Foundation and what we do, that most people only know about a small portion of what we do. With over 48,000 followers, our Facebook page is pretty well-known at this point, as is our website. Our facebook page is a place where parents can go to connect with other parents, ask questions, and get feedback about all things tube-related. The website contains in-depth information about all aspects of life with a child who is tube fed, and includes links to our educational materials, tubie love gear, and all sorts of helpful resources. All of this serves the primary function of supporting families, but that is only part of what we do. We have also worked hard behind the scenes to develop relationships with clinicians and industry professionals so that we can help them better understand the needs of the families they work with. For us, that is what Clinical Nutrition Week and the other conferences we attend are all about.

While at CNW, we had many opportunities to meet with people in every avenue of the tube feeding world. We talked with formula/medical food manufacturers, engineers, sales reps, home supply companies, physicians, nurses, dietitians, pharmacists, product development specialists, researchers, and everyone in between. We were also invited to give a 45 minute dinner presentation to a group of about 35 clinicians and industry professionals with one of the major formula manufacturers about the parent perspective on tube feeding. With each conversation we have had, not just at this conference but at all the conferences we attend, I have felt that there is a disconnect between the people who make, distribute, and sell the supplies that we depend on to keep our children alive and thriving. I have also felt from these industry professionals a great desire to eliminate that disconnect. The companies they work for function to make a profit. They HAVE to in order to stay in business and continue producing the things we depend on. However, as I have met with the individuals who represent the companies, I have felt the passion they have for what they do. They may not have the personal experience of living with a child who is tube fed, but they DO understand that the end users of the products they are innovating/creating/manufacturing/distributing/selling are real people with real lives, and that we depend on them to do their jobs so that we can do ours. They understand that even seemingly small disruptions can have disastrous results for us. They WANT to know how what they're doing affects families and how they can do better.

Likewise, I think there is a disconnect between us as end users of the products and services and the people on the other end of those products and services. We get our monthly supply shipments and don't think twice about how those supplies got to us. That is why I felt the need to write this post and express to other moms like me that there ARE real people on the other end of the supplies and services you depend on to feed your child! These people have families too. At the end of the day, they want what they do to be meaningful. They want to hear from us, the consumers, in a constructive way so that they can make whatever improvements are possible to the products and services we all depend on, and improve quality of life for our children and our families. In the 4 years that we have been attending conferences and cultivating these relationships, we have found that companies who deal with tube feeding are becoming increasingly receptive to consumer feedback. They can't fix what they don't know about, so they need to hear what our pain points are and what might help those things. When they know that information, they can innovate on their end to improve their products or services and better meet our needs. They do care, and they are listening!

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