9 Easy Things You Can Do for Food Allergy Awareness Week!

It’s Food Allergy Awareness Week, the perfect opportunity for each of us to raise awareness about Food Protein-Induced Enterocolitis Syndrome (FPIES). Join IAFFPE in spreading the word about FPIES and making the unknown known. Here are 9 simple things you can do right now:

FPIES Awareness Ribbon1. Use our FPIES Awareness Ribbon to the right as a profile picture on your social network.

2. Help your child color their own FPIES Awareness Coloring Sheet. Take a photo and share it with friends and family on Facebook or Twitter.

3. Share a photo in our Faces of FPIES gallery on Facebook. Let your network see all those beautiful faces we’re fighting for!

4. Join our email list to receive important updates from IAFFPE.

5. Organize a fundraiser to help raise tax deductible funding for IAFFPE. We’ve got tools and ideas to get you started with this rewarding process

Faces of FPIES FAAW 20146. You and your loved ones can wear their support for the FPIES community by purchasing FPIES Awareness Pins and Bracelets.

7. Watch one of our educational videos and share it with your community to raise awareness.

8. Read, learn from, and share NEW articles from the largest single publication ever on FPIES.

9. Make a donation to IAFFPE to support the work we do to improve the lives of patients and families living with FPIES.

Stay tuned to social media all week as IAFFPE honors Food Allergy Awareness Week, and be sure to share how you’re getting the word out about FPIES this week!

AllergyHome Shines a Light on FPIES and IAFFPE

imageOur own Fallon Schultz recently had the pleasure of writing a guest blog post for AllergyHome about FPIES and the work we do.

If you haven’t heard of AllergyHome, it’s an essential site for anyone caring for a child with food allergies. AllergyHome specializes in developing practical teaching tools that benefit our communities. One of our favorite resources is their comprehensive guide Living Confidently with Food Allergy. AllergyHome has also designed an array of valuable tools for managing food allergy at school.

IAFFPE's Fallon SchultzWe are very excited to help kick off AllergyHome’s guest blog series highlighting organizations that work with and support the food allergy community. As guest blogger, IAFFPE Founder and Chair Fallon Schultz offers a look at FPIES, a rare non-IgE mediated food allergy that affects her son, and discusses some of IAFFPE’s key initiatives to increase awareness and improve the lives of patients and families living with FPIES. Thank you to AllergyHome for this opportunity!

Two Years of Progress and Action: Thank You for Making It Possible!

IAFFPE AnniversaryAs IAFFPE marks our second anniversary, we are so proud to work on behalf of you and all those affected by FPIES. When we started two Septembers ago, we couldn’t begin to imagine the way our organization’s journey would unfold and all the positive changes that would occur. And there’s so much more to look forward to. Together, we are taking action, raising awareness, and discovering our voice as an FPIES community.

This blog post is focused on key accomplishments from the past year and exciting things ahead. The rest of the week is all about you: the families who inspire us and the volunteers and fundraisers who make what we do possible. We’ll wrap up the week by giving back to our FPIES community: awarding a $500 Travel Grant to the 2013 FPIES Education Conference!

A Few Highlights from a Busy Year

  • In early June, we received news that FPIES finally has an official diagnosis code: K52.21. Securing the ICD-10 code was an ambitious, year-long initiative for IAFFPE. And the letters you wrote on behalf of children with FPIES made an impact. Because of our collective voice, families will be less likely to suffer from delayed diagnosis or a lack of treatment opportunities. When this code is enacted next year, it will change so much, impacting our knowledge, awareness, research, and funding for this condition.
  • This summer, EVERY pediatrician in the U.S received an FPIES Fact Sheet developed by IAFFPE’s Medical Advisory Board (MAB) and distributed by the American Academy of Pediatrics Section on Allergy and Immunology. This was a huge step in educating all frontline providers about FPIES and ultimately reducing the amount of time that patients go without diagnosis.
  • IAFFPE is the only organization actively funding FPIES research. This year, we funded a new CHOP study that has helped shape our understanding of this condition. The findings of this study were recently published in The Journal of Allergy and Clinical Immunology: In Practice.
  • In July, we were also profiled in The Journal of Allergy and Clinical Immunology: In Practice, a journal targeting clinical practices. We were featured in the July issue on Gastrointestinal Allergy, putting a spotlight on the work we do for FPIES patients and further raising awareness among medical professionals. We’re also the only FPIES group recognized as a lay organization by the American Academy of Allergy, Asthma & Immunology (AAAAI).
  • IAFFPE was honored to represent FPIES as an exhibitor at the AAAAI Annual Meeting and the Annual Meeting of the American College of Allergy, Asthma and Immunology (ACAAI). These conferences were exciting opportunities for IAFFPE to educate and advocate for FPIES patients to thousands of allergy experts from around the world.
  • FPIES was in the spotlight as IAFFPE received media coverage from ABCNews, Good Morning America, and The Ricki Lake Show. Our successful campaigns for Rare Disease Day and Food Allergy Awareness Week further spread the word about FPIES and strengthened our place in the rare disease and food allergy communities.
  • You made the difference over the past year with your amazing fundraising efforts on behalf of IAFFPE. Our next blog post will look at some of the fundraising superstars who are helping to fund research and other important initiatives that are changing the course of FPIES.

What’s on the Horizon

  • We are well into the complicated process of developing consensus guidelines for FPIES. Our Medical Advisory Board is partnering with AAAAI (American Academy of Allergy, Asthma & Immunology) and other leading FPIES researchers in Australia, China, Israel, Japan, and Korea. Collectively, this group has published much of the literature that is currently available on the subject of FPIES. The guidelines will provide a course of action for diagnostic and treatment protocols, research needs, and daily management of the condition.
  • We are thrilled to share that IAFFPE has been working with our friends at Children’s Hospital of Philadelphia to develop CHOP’s FPIES Center. Led by Dr. Terri Faye Brown-Whitehorn, this will be the first center of its kind devoted to FPIES. IAFFPE is excited to be part of the planning process and honored to give input on the specific needs of the FPIES community. We can’t wait to share more details at the FPIES Education Conference!
  • On the research front, the results of the FPIES survey that so many of you participated in were just submitted as an abstract to the AAAAI. The results appear to be very interesting and different than previous studies. The paper is set to be published in February, and we will be sure to share the highlights with you.
  • On October 20th, IAFFPE is presenting the first national FPIES Education Conference in Philadelphia. This is a unique opportunity to bring our community together and hear from expert speakers on a wide spectrum of FPIES-related topics. We hope to see you there!
  • We’re excited that the medical journal Current Opinion in Allergy & Clinical Immunology is developing a special issue on FPIES. Members of our Medical Advisory Board have been asked to address various aspects of the condition. And we’ve been asked to write an article on what parents want doctors to know about FPIES. This is a unique opportunity for the parents’ perspective to be part of the medical conversation on FPIES!
  • In the coming months, IAFFPE will be launching an Education Ambassador Program with our older FPIES children and siblings. We’ll be asking older kids living with FPIES to share their stories, talents and make a difference.
  • We have some exciting news cooking! Chef Mike Jurusz has just joined our Board of Trustees and is the official FPIES chef. We’re working with him to create a series of YouTube cooking videos that offer creative ideas, discuss common challenges, and ask families to submit their cooking obstacles. We’ll also be collaborating with Chef Mike on the first FPIES cookbook!

None of these goals could be accomplished without support and generosity from the heart of our community, people just like you. THANK YOU! If you’d like to be part of the momentum, we hope you’ll consider donating to IAFFPE or joining us as a volunteer or fundraiser.

We look forward to another year of making a real, impactful difference in the world of FPIES.

New Details: FPIES Education Conference

FPIES Education ConferenceWe’re excited to share new details about our first annual FPIES conference for parents and caregivers!

2013 FPIES Education Conference
October 20, 2013
Philadelphia, PA

First, the conference will be a unique opportunity for attendees to participate in FPIES research. A “live” research study will be conducted at the conference, and participants will be able to provide information for the study. Led by Dr. Matthew Greenhawt, the study will focus on the quality of life for FPIES patients and families.

In addition, the conference will be your chance to meet and hear from our team of FPIES experts. The lineup includes: Drs. Anna Nowak-Wegrzyn (Mt. Sinai), Jonathan Spergel (CHOP), Matthew Greenhawt (University of Michigan), Mirna Chehade (Mt. Sinai), as well as Marion Groetch (Mt. Sinai), Sally Noone (Mt. Sinai), and Kim Mudd (Johns Hopkins).

We value the feedback we’ve received from you and have incorporated it into our agenda. We’re finalizing the program, which features a broad range of topics that matter most to FPIES families, everything from the latest medical knowledge to practical tips for daily life. Stay tuned for more details about the FPIES Education Conference!

10 Simple Things You Can Do for Food Allergy Awareness Week

Today marks the start of Food Allergy Awareness Week, a perfect opportunity for each of us to raise awareness about FPIES. Join the International Association for Food Protein Enterocolitis (IAFFPE) in spreading the word about FPIES and making the unknown known. Here are 10 simple things you can do right now:

fpies ribbon1. Use our FPIES Awareness Ribbon to the right as a profile picture on your social network.

2. Help your child color their own FPIES Awareness Coloring Sheet. Take a photo and share it with friends and family on Facebook or Twitter.

3. Share a photo in our Faces of FPIES gallery on Facebook. Let your network see all those beautiful faces we’re fighting for!

4. Join our email list to receive important updates from IAFFPE.

5. Organize a fundraiser to help raise tax deductible funding for IAFFPE. We’ve got tools and ideas to get you started with this rewarding process

6. You and your loved ones can wear their support for the FPIES community by purchasing FPIES Awareness Pins and Bracelets.

7. Make an FPIES-friendly recipe and share it with friends and family.

8. Watch one of our educational videos and share it with your community to raise awareness.

9. Tune in to our social media channels this week as we unveil an important new resource to teach babysitters and caregivers about caring for a child with FPIES.

10. Make a donation to IAFFPE to support the work we do to improve the lives of patients and families living with FPIES.

Feeding Your FPIES Baby — Where to Start?

Feeding FPIES BabyFor many parents, an FPIES diagnosis is received with a sense of relief; finally, there is a word to describe the source of all the fear and confusion. But with the word FPIES also comes a flood of questions, many pertaining to diet. What foods do I start with? How do I trial foods safely? Who can help to figure it out?

These and other questions are addressed in The First Nutritional Guidelines for FPIES developed by IAFFPE’s Advisory Dietitians Marion Groetch, MS, RD, CDN; Carina Venter, PhD, RD; and Brittany Hofmeister, RD. This piece discusses breastmilk and formula, feeding and developmental needs, what solids to trial, and offers helpful feeding tips and ideas for introducing different textures.

We also interviewed Dr. Carina Venter on this subject for our latest FoodPrints newsletter. She is currently a Senior Research Fellow at the University of Portsmouth, where she is doing a Post Doc in the area of Food Hypersensitivity (FHS). She also works as a Senior Dietitian at The David Hide Asthma and Allergy Research Centre where she sees adult and pediatric patients and takes part in research.Karina Venter IAFFPE

What led you to your interest and specialization in FPIES?
I am based in a primary care, secondary care centre. We see FPIES cases at first presentation, refer them for diagnosis to tertiary care centres and look after them jointly with the specialist centre. I think what fuelled my particular interest in FPIES more than 10 years ago now was the lack of information on how to look after the nutritional intake of these children and which foods they can tolerate.

What developments are you excited to see come from IAFFPE?
It is great to see the interest of other medical professionals in the field. The information in the FoodPrints newsletter is also very exciting – I particularly enjoyed reading the cases presented by Dr Scott Sicherer in the Spring 2012 edition as not many people had the opportunity to attend his session at AAAAI 2012.

What changes are you passionate about for FPIES patients?
As I am based in the UK, my passion lies in educating primary care-based healthcare professionals such as GPs, Dietitians, Health Visitors and Nurses to become aware of FPIES and the fact that it often presents with the introduction of so-called low allergenic foods such as rice and oats.

How can seeing a dietitian help assist an FPIES patient?
Dietitians play a very important role in choosing the most appropriate formula for the child, monitoring their growth, ensuring adequate nutritional intake and helping these children reach their food texture milestones.

What are the most commonly introduced safe foods for a child with FPIES?
As we mentioned in the nutritional guidelines piece [Fall 2012 FoodPrints], children with cow’s milk or soy FPIES have a greater chance of developing FPIES to other foods, particularly grains. We therefore often recommend the introduction of yellow fruits and vegetables before introducing grains. Tolerating one food from a food group, often indicates that other foods from the same group will be tolerated safely (i.e., if oats are tolerated than other grains such as barley and wheat are likely to be tolerated, in most cases).

What creative tips can you offer for a patient with a limited diet and few safe foods?
I think the most important tip I can give is to ask for a referral to a dietitian with an interest in FPIES – or even just a dietitian with an understanding of feeding difficulties. Parents are often surprised about the fact that a healthy diet, with a variety of textures, can be provided based on a very limited number of foods!

Nutritionally, what should a parent of an FPIES child be most concerned about and what would indicate a nutritional concern?
Our “gold standard” for indicating nutritional concern is the infant’s growth chart. Monitoring the infants’ growth and regular review of dietary intake by a dietitian should indicate if there are any nutritional concerns, which could be further investigated with appropriate blood tests.

FPIES and Parental Stress

FPIES and Parental StressAt this year’s AAAAI Annual Meeting, we were encouraged to see so much focus on the parental stress and management of having a child with severe food allergies. More and more, physicians are looking at the consequences of this stress and how to best support families in their day-to-day struggles.

“Family Management of Children’s Food Allergies: Patterns of Food Avoidance and Reaction Response Preparation in Relation to Anxiety” was a featured poster at the conference and also appeared in the Journal of Allergy and Clinical Immunology. Read more here: http://www.jacionline.org/article/S0091-6749%2812%2903021-7/fulltext.

Every day, we’re in touch with families who live with FPIES; as resilient as they are, managing the condition can be difficult and stressful. Medical professionals are becoming more aware of the impact that food allergies have on both patients and their families. But even those who live with a condition like FPIES every day need to be reminded of the extra level of stress those allergies can carry and the impact that stress can have.

Food allergies bring with them a variety of emotions: feelings of fear and constant vigilance, a sense of being overwhelmed or always at risk. New anxieties may arise as parents go through the different stages of a child’s development. Adding to the stress, food allergies impact the daily activities that most families take for granted: social and school activities, meal preparation, relationships with families and friends, etc.

Given the emotions and adjustments that families make to live with FPIES, it’s not surprising that caregivers feel the stress or have less time for themselves. It’s not surprising that a family living with FPIES can also be impacted by the financial burden, whether it’s lost work hours, medical expenses, or the cost of special foods.

We all need to take the time to check in with ourselves and our families. Maybe FPIES is causing you significant stress; it can be helpful to discuss these feelings with a trusted family member, friend or medical professional or connect with other FPIES families in your region or online. For others, the stress builds slowly; FPIES is such a part of our day-to-day reality that we can lose track of what a huge impact it has on our lives.

Here are a few more tips to manage the fear and anxiety we often feel as parents:

Teach your child about their food allergies from an early age. The earlier they learn, the more empowered they will become. If you have an older child with FPIES, have them grocery shop and read labels with you, cook with you, or ask questions at a restaurant.

Talk openly with your child about their fears (and yours) and discuss ways to cope with these situations. For example: “I understand you’re a little nervous about starting preschool. I’m a little nervous too, and that’s okay. Let’s talk about how we can both be prepared ahead of time. Then let’s talk about how much fun you’re going to have there!”)

The importance of self-care cannot be overstated. Parents who take good care of themselves take better care of their children. Take the time to do the things that make you feel good: read a magazine, eat well, exercise. You’ll be more relaxed and better able to manage whatever the day brings.

Lastly, pay attention to the present moment. Sometimes we are so distracted by our thoughts of food trials and doctor appointments that we miss out on the present moment. Don’t miss out on the simple joy of reading a book together or hearing your child laugh.