reALLERGIES Podcast Episode 2: Research, Trauma & the Future of FPIES Care | Part 2

reALLERGIES Podcast Episode 2: Research, Trauma & the Future of FPIES Care | Part 2

Welcome to Episode 2, Part 2 of the reALLERGIES Podcast — a continued exploration of FPIES (Food Protein-Induced Enterocolitis Syndrome) through the perspectives of patients, families, and clinicians. In Part 2, the conversation expands into the future of FPIES care—highlighting critical gaps in research, the growing recognition of adult FPIES, and the urgent need to address the mental health impact that often goes overlooked. From the lack of a diagnostic biomarker to the challenges of managing care across all age groups, this episode brings forward the voices of clinicians and advocates working to move the field forward. You’ll hear how patient-driven research, global registries, and emerging collaborations are shaping a more complete understanding of FPIES. At the same time, this conversation underscores a major missing piece in care: the integration of mental health. With high levels of anxiety, PTSD, and isolation reported by patients and families, there is a growing movement to bridge the gap between medical treatment and trauma-informed support—ensuring care addresses the whole person, not just the condition. Because advancing care means more than better diagnosis—it means better support, better understanding, and better outcomes for those living it every day. If you or someone you love is navigating FPIES, you are not alone. 👍 Subscribe for more episodes 💬 Share your experience (patient, parent, clinician) in the comments

reALLERGIES Podcast Episode 2: What Patients Really Need in FPIES Care | Part 1

Welcome to Episode 2 of the reALLERGIES Podcast — a continued exploration of FPIES (Food Protein-Induced Enterocolitis Syndrome) through the perspectives of patients, families, and clinicians. In Part 1, this conversation shifts focus to a critical question: What do patients and families actually need—and are those needs being met? While clinical conversations often center around diagnosis and testing, this episode uncovers a different reality. Families are searching for guidance on managing reactions, understanding long-term outcomes, and navigating the emotional weight that comes with living with FPIES. Through real data, lived experiences, and clinical insight, this episode highlights the disconnect between what is discussed in medical settings and what patients are actively seeking—bringing attention to the psychosocial impact, anxiety, and uncertainty that shape everyday life. Because improving care starts with listening. Part 2 continues with deeper insights into research priorities, unmet needs, and the future of FPIES care. If you or someone you love is navigating FPIES, you are not alone. 👍 Subscribe for Part 2 💬 Share your experience (patient, parent, clinician) in the comments

reALLERGIES Podcast Premiere: “We Can Help You Live With It” — Managing FPIES Day to Day | Part 2

Welcome back to the premiere episode of reALLERGIES Podcast — a series exploring FPIES (Food Protein-Induced Enterocolitis Syndrome) through the combined perspectives of patient, parent, and clinician. In Part 2, Fallon Schultz (Founder & CEO of the International FPIES Association) is joined again by Dr. Anya Nowak-Wegrzyn (Chief of Pediatric Allergy at NYU Langone) and Fallon’s son Landon, a teen living with FPIES, as they dive into the realities families face after diagnosis: fear around food, the trauma of reactions, and the exhausting “waiting game” of oral food challenges. Dr. Nowak-Wegrzyn explains why one of the biggest unmet needs in FPIES is a reliable diagnostic test — because right now, the “gold standard” is still the oral food challenge, an all-day, high-stress process where families often go in with little certainty. Fallon and Landon share what this looks like in real life: the travel, the scheduling headaches, the anxiety, the toll on school and sports, the difficulty of IV access, and the emotional weight of not knowing what will happen next. But Part 2 also focuses on what’s possible. You’ll hear why most patients eventually outgrow triggers, what it feels like to finally “pass” a food after years of avoidance, and how families can build a healthier relationship with food even inside strict limitations. Fallon emphasizes the importance of clinical support that validates lived experience — and how the International FPIES Association helps bridge families to care, resources, and clinicians who truly understand this condition. This episode closes with takeaway messages for parents, patients, and clinicians: keep an open mind, listen closely, start small, communicate with compassion, and remember this is a syndrome you can learn to live with — and you don’t have to do it alone. 📍 Next up: behind-the-scenes from AAAAI with the latest FPIES updates and advocacy work in action. 📩 Topic requests: contact@fpies.org [contact@fpies.org]

reALLERGIES Podcast Premiere: FPIES Through Three Lenses (Parent, Patient, Clinician) | Part 1

Welcome to the premiere episode of reALLERGIES Podcast — a series exploring FPIES (Food Protein-Induced Enterocolitis Syndrome) through the combined perspectives of patient, parent, and clinician. In Part 1, Fallon Schultz (Founder & CEO of the International FPIES Association) is joined by Dr. Anya Nowak-Wegrzyn (Chief of Pediatric Allergy at NYU Langone) and Fallon’s son Landon, a teen living with FPIES, for an honest conversation about what this condition really looks like beyond the textbook. Together, they unpack why FPIES is often misdiagnosed or dismissed, how it was first recognized in the medical literature, and why families have historically felt like they were navigating the “dark ages” — with little awareness, few resources, and no clear roadmap. Fallon shares the moment that changed everything: being told “we don’t know what foods to feed him,” “we don’t have a treatment,” and “there isn’t an organization” — and the pledge that led to the creation of the International FPIES Association. You’ll also hear Landon describe what a reaction feels like in real life — the delay, the warning signs, the sudden escalation — and why validation and clinician support matter so deeply. Dr. Nowak-Wegrzyn explains why this is a “curveball” form of food allergy, why we still lack reliable diagnostic tests, and how patient voices have helped move the field forward (including milestones like the ICD-10 code and consensus guidelines). Part 2 continues the conversation with unmet needs, research gaps, and where solutions must go next. If you or someone you love is navigating FPIES, you are not alone. 👍 Subscribe for Part 2 💬 Share your experience (patient, parent, clinician) in the comments