Four Things to Know About IAFFPE and the FPIES Movement

IAFFPE Founder Fallon SchultzBy Fallon Schultz, Founder and Chair

As IAFFPE honors Food Allergy Awareness Week, we are so proud to work on behalf of those affected by FPIES. As the leading international foundation for FPIES, we are actively pursuing positive, substantive change to alter the course of FPIES, raise awareness, and best serve the needs of our community.

This update serves another important purpose. It lets you know that your donation to IAFFPE matters; it goes toward making a real, impactful difference in the world of FPIES, from funding research to spreading the word about FPIES through the most powerful national channels. We have embarked on a number of exciting projects; we encourage you to join us as together we launch a new era of FPIES. Here’s what you should know:

1.       Initiatives on the Front Lines
I want to start by highlighting three key initiatives that will have an immediate and lasting impact:

  • We are well into the process of developing consensus guideline for FPIES. Our Medical Advisory Board has partnered with the 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. Just imagine the difference that can be made by having formal guidelines for the diagnosis, treatment, and management of FPIES!
  • As you may have heard, EVERY pediatrician in the U.S will soon receive 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 is a monumental step in our ongoing effort to educate all frontline providers about FPIES and ultimately reduce the amount of time that patients go without diagnosis.
  • Over the past year, IAFFPE has also been working with the CDC’s National Center for Health Statistics to create a unique ICD-10-CM diagnosis code for FPIES. Any day now, we expect to receive exciting news approving this code. Requests for ICD-10 codes are not typically initiated by patient advocacy organizations, but in keeping with our progressive mission to create awareness of FPIES, IAFFPE has been at the forefront of this request. I can’t emphasize enough how important this will be for our community on so many levels: billing, insurance and medical records, disease management, treatment advances, research, national statistics, and the list goes on.

2. Research Holds the Answers
Research is the most valuable commodity available to the FPIES community, and IAFFPE is the only organization actively funding FPIES research. As more studies are conducted, more data can be collected, leading to improved methods of diagnosing and treating FPIES. It is our greatest hope that research will lead us to the discovery of the primary cause for FPIES, followed by a cure.

As part of our research efforts, our Medical Advisory Board has developed four surveys to measure global FPIES awareness among key medical professionals (pediatricians, allergists, GI, dietitians). The results will help us understand how to better educate physicians in the diagnosis and management of FPIES. This will also help identify our research priorities so that every dollar donated is spent wisely and in the best interest of FPIES families.

In addition, we are expanding our development efforts in 2013 to fund new research at major medical centers that will help to identify the root cause of FPIES while also advancing treatment options.

3. Key Partnerships

Did you know that IAFFPE is the official FPIES organization affiliated with the National Organization for Rare Disorders (NORD)? We’re also the only FPIES group recognized as a lay organization by the American Academy of Allergy, Asthma & Immunology (AAAAI).

In fact, IAFFPE has a very exciting opportunity to be profiled in The Journal of Allergy and Clinical Immunology: In Practice, a journal targeting clinical practices. We’ll be 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.

4. Your Donation Makes the Difference
IAFFPE exists to help FPIES patients and mobilize a national community that deserves recognition, support and answers. From our esteemed Medical Advisory Board to our dedicated team of parents, we are an organization of volunteers. IAFFPE does not receive any government funding. We rely on donations from the heart of our community–people like you–to accomplish these goals.

In addition to the efforts already cited, IAFFPE brings about enduring, profound change by:

  • Providing free support, information, and referral services to FPIES patients and families. In addition to our growing library of online resources, we respond to hundreds of emails and messages via social media so that patients and families know that they’re not alone.
  • Igniting awareness of FPIES nationally and internationally with media coverage from ABCNews, Good Morning America, and The Ricki Lake Show. Our successful campaigns for Rare Disease Day and Food Allergy Awareness Week have spread the word about FPIES while also reinforcing our emerging place in the rare disease and food allergy communities.
  • Organizing the first national FPIES Education Conference scheduled for October 20th 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.

As I write this post, it becomes clear how interconnected each of these points are. Initiatives. Research. Partnerships. Your Generosity. They are all fueled by each other; they are all dependent on each other. And they are also what set IAFFPE apart.

This is an exciting time for the FPIES community, and we appreciate your enthusiasm and support in helping IAFFPE make the world a safer, happier place for those living with FPIES.

Rare Disease Day 2013: Spotlight on FPIES

IAFFPE RDD 2013IAFFPE was thrilled to participate in Rare Disease Day 2013 on February 28th. Rare Disease Day brings awareness to the thousands of rare conditions that need hope and recognition, including Food Protein Enterocolitis Syndrome (FPIES). We honored the day by unveiling a new video segment on the fact vs. fiction of FPIES, featuring Dr. Anna Nowak-Wegrzyn, an FPIES expert from the Jaffe Food Allergy Institute at Mount Sinai. Thanks to video sponsor Neocate for helping our foundation shed light on a rare disease in the food allergy community.

FPIES: A Conversation with Dr. Anna Nowak-Wegzryn

In addition, IAFFPE’s Amity Westcott-Chavez represented IAFFPE and the FPIES community at a Rare Disease Day event at the California State Capitol. Her presentation highlighted the need for education, awareness and advocacy of FPIES. IAFFPE RDD