A Personal Account from the FPIES Education Conference

Travel Grant Recipient Shaula BrownThanks to Travel Grant recipient Shaula Brown for the following guest post looking back on her experience at the 2013 FPIES Education Conference. For those in our community who couldn’t share the day with us, stay tuned as the video will soon be available featuring some of the highlights and valuable information that was presented at the FPIES Education Conference.

After coming home from the 1st Annual FPIES Conference put on by IAFFPE, I am feeling grateful, renewed, and energized. I learned so much!

I was so excited to hear about the first FPIES Center to be launched at CHOP. We are lucky to have good doctors here in Denver, but I know others are not and I can only imagine the benefit of having so many doctors in one place focusing on FPIES care and research.

It was also very interesting to see the information being presented on chronic reactors as well as acute reactors. My son Ryan has had both types of reactions but tends more towards the chronic side. Our allergist has diagnosed Ryan with FPIES because of his acute reactions but told me that his chronic reactions are not FPIES and instead are just intolerances. It was great to see that chronic reactions are not only very real but are also a recognized part of FPIES. The charts that compared FPIES to other GI and allergy disorders were helpful too. I really got a better, more detailed understanding of the way FPIES works. I also feel more confident in managing the daily issues that we’ll face, from food trials to how to handle FPIES in social situations.

1390623_641234089255917_1757669574_nI can’t begin to describe to someone with a healthy child how lonely and isolating this world of FPIES is. I feel alone, confused and discouraged so often, but the conference let me see that I am not alone. The chance to meet and connect with other parents and even some older children with FPIES was a huge gift. It let me know that I am not in this alone, I am not crazy, and we will get through this—we will survive this! The conference also helped me to understand that my needs as a parent and caregiver are important too.

I am fired up and energized to help spread the information I received to others. I am hoping to meet with other parents in my area to share what I learned (and hopefully turn that meeting into a regular support group). Ryan’s pediatrician also asked if she could get more information from the conference to educate herself, the other doctors she works with, and her other patient with FPIES. I can’t wait to pass along the information to her!

As much I got out of the conference, I know there is still more to learn and more to share. I’m excited for the conference video to come out so that others can see the highlights and get a sense of how special it was for our community to connect and learn together. I am already looking forward to next year’s conference with the hope I can attend again. I want to thank IAFFPE for the generous travel grant that allowed me to attend the conference. I am so thankful I was chosen and can’t wait to work more with them in the future!

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!