FAAW 2016

FAAW 2015

Food Allergy Awareness Week is an important opportunity to raise awareness and educate our communities about FPIES (Food Protein-Induced Enterocolitis Syndrome).

Together, we can Be the Voice for FPIES– spurring research, education and awareness to lead to improved care those affected by FPIES!

FAAW 2014

FAAW 2013

Global FPIES Day 2016

Global FPIES Day 2015

Global FPIES Day 2014

FPIES in Fifteen:

Explaining FPIES in Clear, Concise Words

FPIES is not well known, so when we as families or as professionals are asked to explain what this rare condition is, it can be difficult to put its complexities into a short, easily understood statement. The idea of an “Elevator Pitch”– a short statement that could be shared in a few minutes or less– can be a great framework for creating your “What is FPIES?” response. 

  • A Basic Definition: “FPIES is a type of rare food allergy that affects the gut. Reactions can be severe and in some cases progress to shock”
  • Explain who it affects
  • Explain the challenge of lack of FPIES awareness: “Because FPIES is rare, not all doctors are familiar with it, which can lead to symptoms not being properly managed”
  • End with a positive statement: “With proper nutrition and symptom management, and a little creativity, kids with FPIES can thrive and grow.”

How Do We Begin to . . . 

Start the Conversation

Use Awareness as Action!

Be the Voice!

Start the Conversation with a rack card, available in english, spanish, and french Additional resources can be found here and here.

Create a social media profile picture to raise awareness!

  • Go to canva.com
  • Upload the image above and your own photo of choice
  • Layer the frame image over top of your photo
  • Select the option to download the finished image for social media

Advocating for more FPIES awareness in our communities starts with ONE– each and every one of us can Be the Voice for FPIES Awareness!

Global FPIES Patient Registry and Data Portal

Because FPIES is rare, research is just as essential as awareness. The Global FPIES Patient Registry provides a platform for families to submit data via medically-backed surveys encompassing a range of topics:

  • Family History
  • General Medical History
  • GI components of FPIES
  • Quality of Life

Data is de-identified, so when participants and researchers view it, there is no identifying information attached to the statistics. It is free to register and gives families the opportunity to share their experiences with the research community and hopefully inspire new FPIES studies. Sign up today!

     

FPIES Everyday

One of the challenges many families face daily is the idea of creating recipes that not only meet their children’s nutritional needs, but that are also tasty and kid-friendly. Join our community for this year’s virtual event– the Food Allergy Awareness FPIES Recipe Share. One of the greatest strengths of the FPIES community is our families’ support of one another. Share your favorite recipes/ cooking tips on the facebook event page, and check out the page to learn tips and tricks from other families!

  • For videos to learn more about recipes and cooking, go here
  • For nutrition resources, go here
  • For FPIES cooking, label reading, and other related tutorials, go here

Share with Practitioners

  • What is FPIES: Download and print English/Français/Español
  • FPIES Medical Literature list and flyer (click to view)
  • Practitioner Education Packet (PDF)
  • Practitioner Education Packet en Español (PDF)
  • Information for Nutrition Professionals can be found here
  • Encourage practitioners to register to view the data portal for the Global FPIES Patient Registry here

Share with Our Family

  • Online Learning Library– check it out  here
  • For Cooking and Nutrition resources, go here
  • Download Flyers and Awareness Materials  here
  • Download Emergency Care Packets here
  • Download education packets here

Share with Our Community

  • “How to Help an FPIES Family Today” (video)
  • FPIES Community Awareness Cards
  • The Mighty’s article “19 Secrets Families with FPIES wish Others Knew”
  • Additional Resources here

FPIES and Our Kids

At all ages, kids can be active participants in raising FPIES awareness, whether they are siblings or whether they themselves have the diagnosis of FPIES. Raising awareness can be a positive way to empower kids who may be feeling overwhelmed by the struggles invovled in daily life with FPIES.

Keeping in mind what is appropriate for each age and stage, here are some ways that kids can get involved in raising awareness for Food Allergy Awareness Week and in everyday life!

  • Visit “A Foundation for Kids: The Kids’ Spot” 
  • Visit Sarah’s FPIES Clubhouse on Facebook
  • Get crafty!
    • Color an awareness ribbon picture
    • Create a Perler/Fuse Bead awareness ribbon (in orange and teal colors) and give it to teachers, family or friends, attached to an awareness card
  • Make a snack from safe foods to share with friends and family; hand out an FPIES awareness card with each treat
  • Watch and share the video of Claudine Crangle reading her book “Woolfred Cannot Eat Dandelions”
  • Read and share a book about food allergies with friends and family