Monday, March 7, 2016

An Interview with "No Tube"

What can you tell me about NoTube Organization?
NoTube supports families with children with tube dependency, working with the "Graz model of tube weaning".

We help children who are "stuck" on a feeding tube in absence of a medical need for it. Although the children are able to eat from a physiological point of view, they show signs of oral aversion and food refusal. We help them overcome this obstacle and finally be able to eat orally and sustain their nutritional needs. Furthermore, we help all children with early eating behavior disorders, such as selective eating disorder, infantile anorexia...

Where are you located?

The LLC is located in Switzerland and Austria. We offer online options (so families from all over the world can reach us without the need of travelling long distances, which is a big advantage for medically fragile children) as well as onsite options in different countries all over Europe. Our EAT Campus will be open in April 2016, in Graz, Styria!

Who is on your team?

We have an interdisciplinary team consisting of:
·         Pediatricians (Marguerite Dunitz-Scheer and Prof Scheer have developed the Graz model of tube weaning, they have weaned thousands of children)
·         Psychotherapists,
·         Clinical Psychologists (Sabine and Karoline are also Dr in Medical Sciences and have published a lot on the themes of tube feeding and weaning)
·         Physiotherapist (Eva. who looks back on 25 years of working with children with eating disorders)
·         Music Therapist (Birgit, who is also a social pedagogue and is quite experienced in her work with special needs children) ,
·         Psychosocial counselor
·         Non-medical professionals (marketing, financial department, IT...)

What made you develop an organization for No Tubes?
Our program "Graz model of tube weaning" has been developed and evaluated in the University Children's Hospital of Graz. Due to the increased number of interested families from all over the world, we wanted to offer services in order to help all these families adequately. We are absolutely not against feeding tubes and know that they fulfill a life-sustaining function. But when it comes to the weaning phase, not many professionals are trained and interested, so many children stay stuck on a feeding tube in absence of medical needs for it. These are the children we want to help. As said, we also offer feeding therapy for children with other early eating disorders.

How do you offer help?

  1. Tube weaning via Netcoaching - treatment via as specialized online platform, standardized protocol of reducing tube feeds, daily contact to our experts including messages, video analysis, weight and intake evaluation. This helps children who are medically fragile as there is no need to travel; furthermore the family saves the whole travel costs and stays home in its familiar environment. Over 90% of all children participating can be weaned completely off their feeding tubes! There is no duration limit, we treat the child until it has reached his/her full potential.
  2. "Learn to eat" program - online coaching for children with all kinds of early eating disorders

  1. Eating Schools in our EAT Campus in Graz: 2 weeks intensive support onsite by our interdisciplinary team in addition to the Netcoaching!
  2. Play picnics: all over Europe, to get in touch with our philosophy and programs, our team members currently travel to different locations in France, Sweden, the Netherlands, Great Britain, Switzerland and are willing to come to other countries if wished.
  3. Home visits by our medical experts for children with tube dependency and early eating disorders in order to help the family’s onsite.

Can you give some examples of how you have helped?
We treat children with different underlying medical diagnoses: extreme prematurity or birth complications, heart defects, metabolic diseases, malformations or diseases of gastrointestinal tract, genetic syndromes, psychosomatic/psychiatric diseases, neurological diseases, oncological diseases, renal diseases... who suffer from tube dependency. Furthermore, we work with children with different kinds of eating disorders such as highly selective eating, infantile anorexia, eating disorders in children with autism...

Please have a look at our patient's testimonials: : 

How do you think your organization can help children living with FPIES and feeding tubes? Also, how can you help families looking to avoid the necessary placement of a tube?

Before tube placement, we could evaluate the current nutritional state and situation with the doctors onsite and give specialized advice and help with the decision about tube feeding and support children during the phase of tube feeding or to help optimize the nutrition in case a feeding tube can be avoided from a medical point of view. For children who got tube dependent we can help with weaning keeping the special situation of FPIES patients in mind.

This post is a written interview with NoTube and The FPIES Foundation Executive Directors.  

Sunday, February 14, 2016

Create a Conversation about FPIES for Rare Disease Day 2016!

On Feb. 29, 2016, Rare Diseases Day gives us the opportunity to raise our voices for FPIES in solidarity with all rare diagnoses.  The theme for this year is “Patient Voice”, recognizing the role that patients have in voicing their needs, driving change to improve the lives of those living with FPIES and their families.

A rare disease is defined asrare in the USA when it affects fewer than 200,000 Americans at any given time. A disease or disorder is defined as rare in Europe when it affects less than 1 in 2000. (Rare Disease Day)  

As we honor this day, we encourage you to create a conversation about rare diseases:
  • Promote awareness by sharing awareness materials and talking to your family, friends, caregivers, healthcare providers, daycare, schools, and more about FPIES. 
  • Share your story with your local news and on our Inspiring Families page. 
  •           Participate in patient  surveys by signing up for the FPIES Global Patient Registry to be sure your child’s voice is part of FPIES research. 
  • Advocate for rare disease by teaching someone about FPIES or joining efforts with your state legislature. 

Need ideas for starting the conversation? We can help! Need materials to share?  We can help with that too! 

Still looking for more ways to get involved?  You can: 

Whether on-line or in person, arm yourself with the materials you need to start the conversation and continue to build awareness to this rare type of food allergy.  

Join us in making the voice of those living with a rare diagnosis, such as FPIES, heard!

Wanting to learn more information about rare disease statistics in general? Visit Global Genes or pages to get informed and download their RDD materials.

This post was written by the Executive Board with approval of the Medical Advisory Board of The FPIES Foundation. 

Thursday, January 14, 2016

Sitting Down With Kindrd Food

A company has emerged to offer help to families who have to manage changes in their diet due to a medical condition or dietary restriction. To our delight, they turn out to have the hard to find expertise in FPIES.

The company, Kindrdfood (, pronounced “Kindred Food,” offers 1-on-1 guidance from Registered Dietitian’s (RDs) who are individually matched with a family based on the expertise of the RD and the family’s specific dietary restriction or health challenge. Their system has an easy to use video conference system to connect RD to client. One of the best parts of their solution is that they appear to have high quality personalized recipes and meal plans developed with the support of an expert Chef...YUM! 

We wanted to learn more, so we interviewed Co-Founder and Chief Dietitian, Tara McCarthy, MS RD LDN.  Tara is also a Dietitian on The FPIES Foundation Medical Advisory Board

How did Kindrdfood come about?

Well, I met my Co-Founders at an innovation “hackathon” (a weekend-long competition) focused on challenges in pediatrics at Children’s Hospital Boston, where I have been a Dietitian for over a decade. We won the hackathon based on a dynamic personalized recipe website for people with dietary restrictions, but we didn’t think that had enough impact on what families really deal with. So, over a few months of strategy work, we felt that the gap in guidance would be the opportunity for us to have the biggest impact on these families. In particular, I have worked with patients who have FPIES and other rare conditions for a long time and it means a lot to me to make sure that our team covers even the most challenging conditions.

To you, what makes Kindrdfood’s solution more effective in general and specifically for clients with FPIES?

Well, certainly the technology helps a lot. It gives clients access to guidance from anywhere and us the ability to offer more convenient availability, including nights and weekends. What means the most for clients though, is that the Kindrd Nutritionist (one of our Registered Dietitians), that is matched with them really knows how to help them with their specific challenges. The way we do this is that our team is made up of experienced and additionally trained Registered Dietitians who have a broad base of knowledge and specialized areas of expertise. We meet weekly to discuss current topics and anonymously review challenging client cases, so we’re constantly evolving and improving. For families managing FPIES, it means having the confidence to trust in their guide, Kindrdfood, and we hope to take a little of the pressure and stress off of their shoulders.

It’s hard for a family managing FPIES to trust that anyone in the culinary world could understand how to handle these limitations, so tell us about this Chef or yours! 

Lauren Deal! She is wonderful! It’s funny, because we are careful to only recruit Dietitians for our team who absolutely love food, so we all love working with Lauren. We’ve taken great care to make sure that Lauren has a very clear understanding of what matters for safety and health of people with FPIES and other conditions, and she helps us learn more about the nuances of flavor and texture when we have to substitute different ingredients to offer people better taste and more variety. Lauren is a mother and a chef, and brings her passion for both food and family to every discussion and every recipe. It’s really a pleasure to have her on out team (you can read more about their leadership team here:

What are the most frequent challenges that your clients with FPIES start with? 

There are several specific things, but honestly the number 1, is that they just don’t know where to start. It’s overwhelming for most families. They think about what they don’t know, what they can’t do and emotionally that’s a lot to take in. These are legitimate reactions though. There are limited safe foods, and there are a lot of things to learn. What we try to do is slow things down and start from the top. Give families something to focus on and start with simple information. In my mind, I’m thinking about the main issues that will matter for the family. Limited safe foods, growth challenges and lack of variety are top factors for the family, but behind that I’m thinking about nutrient deficiencies and challenges advancing with textures. What really drives me personally though, is trying to maintain or reintroduce a pleasure in eating. Food is such an important part of life, and should be a joy. We work hard to make sure that is the case. 

What can a client with a newly diagnosed FPIES expect for their future in your experience with help from your team?

Well, I think that it’s important for families to take it step by step as a slow progression when it comes to FPIES, but even if there are breaks in the process, I want clients to believe that they have happy kids in their future. We’ll increase the quantity and variety in their child’s diet, and variety might not mean more foods, but, for example, enjoying potatoes in several different ways. We’ll bring back enjoyment to meals. I try to make sure that they feel that they have a guided path and a partner to trust in their journey. They can trust that I’m going to paying attention to the details of the child’s growth and nutrients. I’ve been lucky enough to have clients who have taken this journey with me and I’ve seen them reach their goals. It’s such a pleasure to receive photos from a client of their child with a huge smile, enjoying a new food. That’s why we do this.

What is the one message that you would offer to families amidst a life change with FPIES? 

Oh, without question, I would say, you will be OK and your child will thrive. While it may take time and you might see positive changes only in small increments, you’ll be OK. 

This post is a written interview with KindrdFood and The FPIES Foundation Executive Directors.  Tara McCarthy has been a valuable member of the Medical Advisory Board of the FPIES Foundation since 2013.