A Message from I-FPIES President and Founder Fallon Schultz
Today the International FPIES Association (I-FPIES) marks our fourth anniversary. Our organization was founded in September 2011 as the International Association for Food Entercolitis (IAFFPE) by a group of parents on a mission. We have grown into the leading global organization for Food Protein-Induced Enterocolits Syndrome (FPIES), dedicated to funding research into the causes, treatments and an eventual cure for FPIES; increasing education and awareness of the condition in the medical community and the public; and advocating for the needs of individuals with FPIES and their families.
During the past four years, FPIES has emerged from the shadows as a real and growing global health concern. We are very proud of what this organization has accomplished in a relatively short amount of time. Significant progress is being made on every front, from awareness and support to advocacy and scientific research. Working together, our dedicated volunteers and other tireless advocates have brought about major change and created hope for thousands of patients with FPIES and their families.
At I-FPIES, we started this movement to focus attention and resources on this poorly understood, little recognized condition. Our mission is to fight every day to bring us closer to the answers we all seek about FPIES and how to make life better for those it affects. Above all, we understand that these answers cannot come a moment too soon.
A Few Highlights
We started the year with our rebranding as the International FPIES Association and the launch of a fresh website filled with an array of new support resources, a more in-depth discussion of FPIES, as well as expanded advocacy, awareness, education, and fundraising sections. We also updated the organization's research mission and milestones and launched our Trainee Travel Grant program, which assists research trainees with an interest in and commitment to the advancement and research FPIES.
In February, FPIES was on the agenda at the Annual Meeting of the American Academy of Allergy, Asthma & Immunology. In addition to hosting the I-FPIES booth with educational materials, our medical advisors presented a number of seminars and oral abstracts on FPIES. I was also honored to speak on FPIES from the parent perspective. In addition to spearheading the increase in presentations at AAAAI, I-FPIES has also been working to ensure FPIES is included in the discussion at the Annual Meetins of the American College of Allergy, Asthma, and Immunology (ACAAI) and North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN).
This has also been a breakthrough year for FPIES research, as our Medical Advisory Board members published new literature on the condition and numerous publications resulted from I-FPIES initiatives. One trend to note has been the shift in focus from the provider to the patients, as evidenced by multiple studies into the quality of life for FPIES patients and the caregiver burden. You can help us advance this research today by participating in a new FPIES study from our Medical Chair Anna Nowak-Wegrzyn, MD, on the costs associated with FPIES, the impact of FPIES on quality of life, and the feeding difficulties in children with FPIES.
The first National FPIES Awareness Day took place on May 4, 2015! As the result of the International FPIES Association's advocacy efforts, the U.S. Senate designated this day. More than 1,000 supporters joined our national campaign by signing and sharing the I-FPIES petition to make this day official. In addition, families in New Jersey and Pennsylvania shared with Senators Booker and Toomey what National FPIES Awareness Day would mean to them, leading the lawmakers to sponsor and successfully pass Resolution 129 on March 27, 20015.
As part of National FPIES Awareness Day, the FPIES community joined together to Take a Pie in the Face for FPIES. This amazingly successful challenge raised money to fund I-FPIES research, education, awareness and advocacy initiatives.
We've come so far as a community, and the year ahead is paved with more milestones.
Food Protein-Induced Enterocolitis Syndrome (FPIES) finally has an official diagnosis code: K52.21! And on October 1, 2015, that code will take effect with the implementation of the new ICD-10 system. The code will enable more accurate diagnosis and allow us to track how common FPIES is, along with countless other implications. It is a game-changer for our community!
Another landmark for FPIES is close on the horizon. The first consensus guidelines for the diagnosis and management of FPIES have been completed after two years of development. We worked with AAAAI to assemble an international working group that has created a complete document addressing all aspects of this condition. Stay tuned for exciting news on the guidelines coming very soon!
Looking ahead to spring, we will be hosting our second FPIES Education Conference for patients and caregivers in Chicago. We received an incredible response from our pre-conference survey and can't wait to share more details and a robust agenda on the topics that matter most to you. We hope you will join us!
You Make the Difference
Your generosity has made all this possible. Your commitment and contributions support this one-of-a-kind, volunteer-run organization. Your time and your money support this worthwhile cause, and because of you, I-FPIES will continue supporting families, and continue to advance this condition for years to come. On behalf of the I-FPIES leadership, our medical advisors, our volunteers, and all the patients and families who benefit from your generosity, we thank you.
We continue to be amazed by the courage and perserverance of the families we meet; we are energized by you. We still have many miles to go, but know that we are being heard.