I-FPIES Marks Our 8-Year Anniversary: You Make It Possible

This week, the International FPIES Association (I-FPIES) marked eight years of service to the FPIES community. In that time, I-FPIES has taken pride in being an advocate for patients and families living with food protein-induced enterocolitis syndrome. Our efforts in the areas of research, education, support, and advocacy have played a significant role in advancing the disease over the years, making sure those impacted by FPIES have a voice.

In September 2011, a group of dedicated families and providers launched this organization to help put the pieces of the FPIES puzzle together. Eight years ago, FPIES was an invisible condition, but we had a calling to help and a passion to make a difference.

Since then, progress has been made on every front in advancing FPIES. Working together, our supporters, volunteers, and medical advisors have brought about major change and created hope for the FPIES community.

Every year, medical providers are becoming more educated on how to diagnose and manage FPIES.  In late August, we announced the publication of a groundbreaking new book on FPIES. Food-Protein Induced Enterocolitis Syndrome: Diagnosis and Management is comprehensive guide to the condition, featuring 17 chapters from leading experts in FPIES care and research. I-FPIES Founder & President Fallon Schultz Matney was honored to contribute a chapter on the creation of our organization and our role in advancing the condition over the years.

In August, I-FPIES also announced a new study to investigate the intestinal microbiome of the infants with FPIES, led by Principal Investigator and I-FPIES Medical Advisory Chair Anna Nowak-Węgrzyn, MD, PhD. The findings may result in the development of a novel approach to treat FPIES and potentially prevent FPIES in infants at risk. This promising new research is funded by two generous gifts from families living with FPIES.

On May 4th, the FPIES community marked our 5th National FPIES Awareness Day. I-FPIES is grateful to everyone who offered a personal glimpse of the FPIES journey, who shared resources to increase awareness and education, who generously supported the work we do, and much more. Together, we reached nearly 100,000 people and put a spotlight on this poorly understood condition!

In April, I-FPIES leadership met with the National Institute of Allergy and Infectious Diseases (NIAID), one of the U.S. National Institutes of Health (NIH). After hearing our community’s needs and challenges, NIAID began organizing a first-of-its-kind FPIES workshop to take place on March 31, 2020. We’re working with NIAID to develop a robust agenda that brings together leading FPIES experts to discuss research priorities and next steps.

In February, I-FPIES traveled to the AAAAI Annual Meeting in San Francisco where we helped present a special course on “Allied Health: Food Protein-Induced Enterocolitis Syndrome: Diagnosis and Management.” Dr. Lisa Bartnikas also presented on the “Psychosocial Impact of Food Allergy,” using data on gathered from our 2018 FPIES Education Conference about the burdens of FPIES for patients and caregivers.

In addition, groundbreaking research led by Dr. Nowak-Wegrzyn was released at AAAAI, establishing that FPIES is more common than previously thought. Preliminary results suggest that as many as one million individuals in the US live with FPIES.

Last October, I-FPIES’s Fallon Schultz Matney attended the Food Allergy and Anaphylaxis Meeting in Copenhagen, Denmark. Hosted by the European Academy of Allergy & Clinical Immunology (EAACI), we were honored to represent FPIES at this meeting on global food allergy issues and policies.  

This October, the IFPIES team will travel to Florence, Italy for EAACI’s Pediatric Allergy & Asthma Meeting, where they will lead a special symposium on the FPIES guidelines.

This fall will also see the launch of a major educational initiative by IFPIES to help both families and providers learn more about FPIES and manage the condition. Stay tuned for an exciting announcement!

Last but certainly not least, we are thrilled to share that IFPIES will also host our 4th FPIES Education Conference in 2020. Stay tuned for the date and location. We hope you can join us for a remarkable day of insights, connections, and hope!

FPIES families, every day we are inspired by your resilience, strength, and love. As you care for your child with FPIES and shepherd them through this disease, know that you are not alone in the fight.  

The answers are coming — and families like yours are helping us get there! Please consider making a donation to help mark this anniversary. Together, we can fight FPIES and advance our understanding of this condition!

You Might Also Like

Leave a Reply

Your email address will not be published. Required fields are marked *