August 2014- August 2015: Our Fourth Year in Review

Over the last four years, we have watched our little ones grow right alongside the Foundation. So many of the new families we “met” after our founding now contact us with their inspirational stories--  we proudly hear the stories of children outgrowing FPIES and the stories of children thriving in the face of this diagnosis and learning to self-advocate. The hallmark of these past four years has clearly been connection, and here at the FPIES Foundation, we are so honored to be a part of your family's journey. As we move into our fifth year together, we strive to maintain our connections and to provide all members of this remarkable community with even more tools, resources and sources of empowerment.

So, what have we been up to since last August? We focused on:

Empowerment

• Partnering with ThriveRx to bring families the webinar “Advocating for your Child in the healthcare system”,
• Providing Helpful Tools to start the conversation about FPIES, and advocate for greater awareness
• Making raising awareness easy with our expanding page of printable fliers
• Helping families to be prepared with a few quick and simple ways to share awareness, “31 ways in 31 days” for Food Allergy Awareness Month
• Highlighting what “FPIES in a word” means for families living with the diagnosis

• Spreading the awareness on the first-ever Global FPIES Day on Oct. 14, 2014
• Sharing info graphics created just for spreading awareness via social media or in print FPIES: Simple Words, Complex Diagnosis
• Sharing tools for FPIES management:

• Single-page action plan:  Download, print, and connect with your child’s doctor today to work out the details. 
• How to identify shock, our ‎FPIES Medical experts break down the critical symptoms you need to look for. 
• Emergency Care! From action plans to ER letters, our website has everything you need in one convenient location.
• Nutritional Resources for Families, a newly released webpage to support nutritional management
• Nutritional Resources for Professionals, a newly released webpage designed specifically for nutrition professionals who support children affected by FPIES and their families

• Expanding tools for daily  life with FPIES:
• “Someone's in the Kitchen with ‪‎FPIES”  offers a go-to resource for recipes and cooking tips.
  
• Share your family favorites!, families help families  by sharing what products they use regularly or have discovered!
• Food Journals-- “one size fits all” does not always apply to FPIES. A mom shared one approach, that caught the attention of her doctors, in this blog 

Building Global Awareness and Resources by:

• Proclaiming October 14th to be recognized as Global FPIES Day.
  
• Joining forces with Rare Diseases Community and Global Genes  for amazing resources to help FPIES families for Rare Disease Day and every day!
• Providing informational and awareness packets, available in PDF format to view, download and print, on the new Global FPIES Day page!
• Translating FPIES– SEIPA Información en español! A global need for FPIES awareness is clear. These community awareness cards, translated into Spanish, expand the reach of FPIES education. Download in English and en Español from our awareness flyer bulletin board!
  
• Surveying families about the gastrointestinal impact of FPIES through the FPIES Global Registry.
• Supporting the growth of FPIES advocacy organizations, worldwide 

Education Initiatives:

• Providing families with FPIES information at community events, such as Boston's Franklin Park Zoo, Boston FARE Walk 2014, and FASGMHN Food Allergy Resource Fair
• Fostering online awareness events, such as our “Be the Voice,” “FPIES in a Word,” and the “FPIES Recipe Challenge” campaigns
• Sending FPIES awareness packets to families for ‎FPIES resources at their fingertips (contact us today for your packet!) 

• Participation in Several Awareness Days throughout the year, such as:


• Feeding Tube Awareness Week 
• 'We are #‎FPIES. We are the #‎1in10' photo album online campaign for Rare Disease Day 2015; putting a face on the 1 in 10 people worldwide that suffer from some type of Rare Disease. 
• Food Allergy Awareness Week 2015. We participated in several awareness activities including a photo album, inspired by our community, that shares pictures and corresponding words illustrating life with Food Protein Induced Enterocolitis Syndrome. .
• May 4^th was recognized in the US as a day during Food Allergy Action Month for raising ‎FPIES awareness.  Families were encouraged to raise awareness and get the conversation started with their social media accounts-- #‎AskMeAboutFPIES
• In March, for National Nutrition Month, we asked Bailey
  
  Koch, RD, CSP, LD of our Medical Advisory Board to come up with some essential nutrition tips and recommendations geared towards FPIES families.
• Debuting at Community and Scientific Events such as: 
• The Annual NASPGHAN conference, a conference for Pediatric GI health professionals that includes Physicians, Physicians Assistants, Nurses and Dietitians, providing FPIES materials to these health practitioners vital to our children’s medical care.
  


• The FARE Walk in Boston.  Amanda LeFew, Co-Director of The FPIES Foundation, greeted families,  FPIES Foundation Panel Member, Victoria Warren, Emceed, and Medical Advisory Board Members Dr. Lee, Dr.Yuan, and Dr.Shreffler were in attendance. A large meet-up of FPIES Families was celebrated!

As we look to another year ahead, we are so grateful for how much growth we have seen in the FPIES community over the years. We are humbled that all of you have shared in this journey and will hopefully remain actively involved in the years to come. It is because of your support that The FPIES Foundation has been honored, yet again, with a prestigious 2014 Top-Rated Award by GreatNonprofits. We are also proud to have been featured on Rare Disease Day recap from our friends at Global Genes. We would like to send a big thank you to all our families who made sure FPIES had a strong voice on this international day of awareness, and all other days this part year!

In addition to our incredible community of FPIES families, we continue to be amazed at the tireless efforts of our Medical Advisory Board in their advocacy for FPIES and food allergies, not only among families but also among their colleagues.

• Last October, MAB member and Registered Dietitian Bailey Koch spoke at the Pediatric Nutrition Conference of NASPGHAN, educating other professionals about FPIES.
• The Western Society for Allergy, Asthma and Immunology Conference featured a discussion on FPIES, led by Dr. Glenn Furuta of our Medical Advisory Board, looking at the goals of the gastroenterologist in regards to FPIES care.
• Dr. J. Andrew Bird of our Medical Advisory Board details the newly released FPIES survey discussed at the recent AAAAI meeting. The discussion focuses on gaps in the diagnosis and management of FPIES. 
• ‪FPIES Foundation Medical Adviser Dr. Qian Yuan, a Pediatric Gastroenterologist with Mass General Hospital, released a new children's book: “Macaroni Isn't the Same Without Cheese.” It's written to help school age children understand EoE - a message that applies to kids living with FPIES, too.

Families, supportive medical professionals, and the amazingly strong infants and children we all support continue to fuel the passion of The FPIES Foundation, every day, every year. Together, small shoes CAN take big steps towards awareness, support and advocacy.

If you would like to learn more about our activities, be sure to check out our annual reports and current events pages! If you would like to learn how you can make a greater impact, contact us today for information about volunteering and special partnerships. Join us as we continue to connect, support and empower for many years to come.

This post was written by the Executive Board of The FPIES Foundation 

A Rare Disease Day Challenge for FPIES

This year, in honor of Rare Disease Day, a family in the FPIES community hosted an awareness event for FPIES.  We, at the Foundation, found the event very encouraging and asked them to share their story...

Chase's FPIES Challenge started out as a way for me to help my friends and family understand what living with FPIES is all about.   Chase is 3 and by now they have all heard about Chase's 'crazy food allergies,' and some of them even know the lingo, asking about passes, fails, challenges and triggers.  A few may even know what FPIES stands for.  But hearing about it and living it are two very different things.

I challenged them to cook just one meal in the month of February (leading up to Rare Disease Day) that would be safe for Chase to eat.   Chase currently has about 25 safe foods.  I provided clear instructions, and an ingredient list.  I indicated where an ingredient was brand specific or needed to be organic.  I made sure they knew that 'processed in a facility where soy is processed' was a no-go and then I wished them good luck.

Then the questions started coming in.   Can I use pepper?  No.  Can I use spices?  Sea salt only.   Can I use chicken broth.  No!

Then the recipes started coming in.  I was blown away.   My fellow FPIES and food allergy families got it right away.   It warmed my heart that they tried to prepare meals that would be safe for our kids to eat together.  If we could magically erase the miles between us I'm sure we would have!   I was amazed by the culinary skills I never knew some people had and inspired to try some of these creations in my own kitchen.   It brought tears to my eyes when one friend had her 7-year old daughter help her make a kid-inspired safe meal, complete with a handmade menu.

Then one friend really hit home with me, a friend I haven't seen in 13 years! She told me her first attempt at apple blueberry muffins was a disaster.  She admitted she was about to just give up and skip the challenge.  Then she thought of us and thought of Chase and realized that's a luxury we don't have.  She tried again and made some amazing looking muffins.

I can't order pizza because I had a long day at work or rely on a frozen lasagna because I didn't have time to go grocery shopping.   FPIES is our life, at least for the foreseeable future.   We embrace it,  we manage it. We put on a happy face and positive attitude and thank God every day for two healthy boys and the progress Chase continues to make.   But at the end of the day it is exhausting both mentally and physically and there is no room for error.

I truly want to thank everyone who took Chase's FPIES Challenge or even those who just followed along.  FPIES can be isolating but I believe the burden is on those of us living with it to raise awareness.   Truly,  we are not alone!

This article was written by Victoria Warren.  Victoria is a television news reporter for the NBC affiliate in Boston, WHDH-TV.  Victoria is a parent volunteer with The FPIES Foundation Volunteer Advisory Board.  Follow Victoria on twitter @VWarrenon7.

Reading Between the Recipes: How to Start Your Cooking Notebook Today!

Cooking with FPIES in mind can be quite an adventure! When using substitutions and often uncommon ingredients, there can be a steep learning curve involved in figuring out how to turn safe ingredients into a variety of interesting dishes and baked goods.

Fear not! Head over to the Cooking and Nutrition section of our website and find resources to help create an FPIES Cooking Notebook, an invaluable resource for all kitchen adventures!

What is a cooking notebook?

A cooking notebook is a type of journal used for keeping track of recipes, notes on specific products or foods, and what cooking methods/recipes have previously worked well (or those that have not worked). This resource can even provide a springboard into creating your own recipes! For individuals learning to cook in a new way not often discussed in commercial cookbooks, the cooking notebook is essential.

Let us take a look at the various tools and outline their uses:

•  Helpful Baking and Cooking Substitutions
• Keep this list handy when altering “traditional” recipes to suit your family's safe foods. Be sure to read the tips and list of additional resources for extra help!
•  Label Reading Tutorial
•  An essential tool in navigating the grocery store aisles when seeing safe ingredients for recipes!
•  Homemade Baby Food
• Crafting recipes for the smallest of gourmands? From cooking techniques to storage tips, this tutorial will be a wonderful stepping stone to getting started.
• Kitchen Equipment to Consider and its Uses
• Need help figuring out what kitchen equipment might be helpful to your cooking endeavors? Consider this list and then tailor it to your needs!
•  Allergy Friendly Cookbooks and Websites
•  Checking out cookbooks and websites targeted at allergy friendly diets can provide inspiration for creating your own recipes or simply provide a venue to seek out safe recipes for your family.
• Produce Washing and Preparation
• Wondering how to remove waxes from produce? This tool has a few options for thorough produce washing and wax removal.
• Quick and Easy Tips: Saving Money on a Food Allergy Diet
• Allergy friendly diets can sometimes drive up the costs of your grocery bills--- these tips can help learn ways to save money.
• Creative Tips for Food Preparation for Various Ages
•  Check out these lists of ideas for ways to help make mealtimes more interesting and appealing for all ages and developmental stages.

Now with these resources in hand, choosing an organizational strategy for keeping the resources together can be helpful.

I personally use a binder that has a combination of notebook style pages and plastic pocket pages that fit two different sizes of recipe cards. It gives me the versatility I need to keep my cooking endeavors organized.

Those who are particularly computer savvy may even want to keep on online cooking notebook, using a combination of organizational sites like Pinterest and self-created documents available for viewing in a database like Google Drive or the Cloud.

Whether using a simple spiral notebook with pockets, a three ring binder, or even a specific cooking notebook from a specialty store, keep one key concept in mind. Learning what structure and tools that will best meet your family's needs is essential to getting the most out of your cooking notebook.

Copyright © 2013, The FPIES Foundation

Post contributed by The FPIES Foundation Executive Board Member, Amanda LeFew. Amanda also blogs about her family's experiences living and cooking with FPIES at Baby B and Our FPIES Test Kitchen.