Fallon Schultz

My personal experience with Food Protein-Induced Enterocolitis Syndrome (FPIES) began when I gave birth to my first and only son. His traumatic journey ignited my passion to become a global advocate and researcher for patients and families impacted by this complicated disorder. It is my lifelong commitment to bring non-IgE mediated food allergy on par with traditional food allergy by bridging the gaps between patients, families, and providers. To advance awareness of FPIES, I created the International FPIES Association (IFPIES) in 2011, which is now the leading global patient advocacy organization for the disease. By utilizing my background as a licensed clinical social worker, I conducted a needs assessment to determine the strongest avenues to raise awareness and advance the condition. I sought out collaboration with the leading medical experts and assembled an international, world-renowned medical advisory board, forging a partnership to identify the common challenges patients face to create real-world solutions. The organization’s first major completed initiative was the creation of K52.21, the formal ICD-10 code for FPIES. Together with Dr. Anna Nowak-Wegrzyn, I petitioned the CDC for this code, which was awarded unanimously in October 2016. It was imperative that we establish this code to track prevalence of FPIES and formally place it in the medical dialogue and literature. Through roundtable discussions with global thought leaders, I encouraged representation of FPIES in the scientific literature, which led to expansive growth from 2010 (less than 10 publications) to 2022 (over 300 publications). I have personally contributed to over 20 peer-reviewed publications and assembled 40 global experts to complete the “International Consensus Guidelines for the Diagnosis and Management of Food Protein-Induced Enterocolitis Syndrome,” a 99-page document published in 2017 that has established the standard of care for patients worldwide. From these advancements, my passion to shed light on the psychosocial, socioeconomic, and quality of life issues that patients battle daily led to an overall paradigm shift and appreciation for these challenges in food allergic patients as a whole. I currently sit on and actively contribute to over 15 academic and societal workgroups, including the American Academy of Allergy, Asthma & Immunology’s (AAAAI’s) “Adverse Reactions to Food Committee,” where I have spearheaded the development of three subcommittees specific to FPIES and mild food allergy. Additionally, to accurately represent the global landscape of FPIES, I am a member of the “Patient Organization Committee” with the European Academy of Allergy and Clinical Immunology (EAACI) and have established international chapters of IFPIES on every continent while contributing to global discussions with CODEX and the United Nations Food and Agriculture Organization to shape initiatives to benefit food allergic patients. To further increase awareness of FPIES, I have organized and hosted three national patient conferences and am a faculty member and decorated international speaker with the major medical societies and academic centers. Growing a public awareness of FPIES is an initiative that is deeply important to me. In 2015, our organization’s efforts led the United States House of Representatives and Senate to pass a resolution proclaiming May 4th to be National FPIES Awareness Day, a collective effort of dedicated families to honor patients impacted by the disease. In 2019, after advancing FPIES from an advocacy and awareness perspective, it become evident that funding research was a dire and urgent need. I personally reached out to the National Institute of Allergy and Infectious Diseases (NIAID) to request a meeting to discuss representation and funding for the full landscape of food allergic disorders, inclusive of FPIES. On June 22, 2022, NIAID’s first-ever “FPIES Workshop” will be conducted to identify research priorities and outline funding opportunities. It has been my life’s greatest honor to collaborate with the NIH to identify speakers, experts, and topics for this program and to be invited to speak on the patient’s behalf to demonstrate the realities of living with FPIES. The International FPIES Association is a lifeline and trusted resource for many patients and families deeply suffering from FPIES. It is also uniquely positioned to support healthcare providers worldwide. It is our commitment and goal to establish diagnostic and treatment options through collaborative partnerships, ultimately followed by a cure.