I’ve just returned from the Mary H. Weiser Food Allergy Conference in Michigan, an inspiring confluence of advocacy, research, and business, all focused on one shared mission: Improving the lives of those living with food allergies. I’ve been attending food allergy research forums around the world for over a decade, and I can honestly say the momentum and possibilities in this field have never been more exciting. We’re entering an era of real hope and innovation, with promising new treatments on the horizon and a community more unified than ever in its goals.

During his opening remarks, Dr. James Baker spoke about the spectrum of experience within the food allergy community. There are those who have lived through what it means to experience anaphylaxis, and those who haven’t. That difference shapes how people perceive risk and urgency, and what kind of treatment they seek. The lens through which this disease is seen is profoundly shaped by whether one has stood on the edge of loss or even crossed it. It alters the questions you ask, the precautions you take, and the urgency with which you act.

So, it was from within this space of progress, this hopeful and energized atmosphere, that I read about the most recent food allergy death. And in an instant, that optimism deflated.

Avarie, a young American student studying abroad in Rome, had a known tree nut allergy. Two close friends of the Tierney family contacted Allergic Living to clarify that, contrary to the initial police report, Avarie had clearly informed the restaurant of her allergy. Yet her avocado toast was served with pesto containing cashew.

Avarie wasn’t careless. She had not one, but three epinephrine auto-injectors with her that day. The family was later told the first one failed to deliver medication.

At the onset of the reaction, Avarie used her inhaler and took Benadryl. When those didn’t help, she administered two EpiPens. One of her friends called emergency services, but family friend Lisa shared with Allergic Living’s editor Gwen Smith that the ambulance was not equipped with the proper medication. The amount of ground cashew she was exposed to in the pesto, combined with the fact that the emergency team did not have the proper medication to treat anaphylaxis, proved too much. Despite life-saving efforts by medical personnel, Avarie tragically passed away.

This tragedy is heartbreaking, but the storyline is not new. I have written often that when a person dies from food-induced anaphylaxis, those of us in the food allergy community feel each tragedy personally. How terrifying it is to realize that one mistake can lead to a funeral. These stories should not be viewed through the lens of rare outliers. They are the result of systemic failures that continue to cost lives.

What struck me most about Avarie’s case is how many layers of protection failed. She clearly communicated her allergy, yet the food served still contained cashew. She carried epinephrine and used it, but the exposure was too great, and the emergency response lacked the medications that might have saved her. It made me ask: How are we still here? What are patients being told? Who is preparing them and the people around them for a disease that can escalate so quickly and end so tragically?

At the Michigan conference, I sat at a table with Dr. Scott Sicherer, advocate Stacey Saiontz, and food allergy mom Ilana Golant, founder/CEO of the nonprofit Food Allergy Fund. We talked about many things, but one point kept surfacing. It matters what your doctor tells you to do regarding your food allergy.

Dr. Sicherer gave an example of a patient who was diagnosed with a food allergy at age three, but who he only saw again when they were about to head off to college. At that point, he could talk about the importance of reading labels or ordering food safely in a restaurant, but the reality was that this young adult was about to live independently and hadn’t had years of practice developing those potentially life-saving skills.

That reflection stayed with me. I realized that I have been having my son order his own meals for many years. He could make mistakes, learn from them, and ask questions while I was still there to guide him. Learning how to ask the right questions, check for cross-contact, and advocate for yourself doesn’t happen overnight. These are not just clinical instructions. They are habits that must be practiced to become second nature.

But our discussion sadly led to the current reality. Not every family gets this. Too many patients are never referred to an allergist. They never have “the talk” about ordering food at a restaurant or navigating a foreign city with a life-threatening allergy.

Many teens and young adults head off to college or study abroad without the tools and training they need to navigate daily life safely. These skills include how to advocate for yourself, how to manage risk, and how to respond in an emergency. They are often assumed, but they must be taught. Sometimes, they can be the difference between life and death.

I often write about how society underestimates food allergies—the jokes, the skepticism, the “is it even real?” mindset. This dismissiveness seeps into clinical care, school policies, and even the self-confidence of patients themselves, especially young adults who never want to be seen as different. It fosters silence when we need advocacy. It creates complacency where vigilance is required.

So where do we go from here?

We need education at every level, not just for patients but also for families, schools, universities, and especially those working in hospitality. We need physicians of all specialties to recognize when a patient should be referred to an allergist. We should teach how to spot and treat anaphylaxis as seamlessly as we teach when to use CPR. Knowing how to use an epinephrine auto-injector or nasal spray must be normalized through repetition, accessibility, and a stigma-free approach. And first responders must be equipped with the most effective treatment for anaphylaxis: Epinephrine.

We also need to keep telling these stories, not for shock, but for change. Behind every tragedy is a call to action.

I have met too many parents who have lost a loved one to food-induced anaphylaxis. Many of them become fierce advocates because they don’t want another family to go through what they did. But it should not take a tragedy to initiate change. We should not have to keep building awareness on the backs of grieving parents. I don’t want any more fierce advocates created this way.

At the Michigan meeting, surrounded by brilliant researchers, devoted clinicians, fierce advocates, and innovative entrepreneurs, I was reminded just how far this field has come. The conversations were hopeful. The science was promising. The commitment to progress was palpable.

I’m grateful to be part of such a passionate and forward-thinking community. It is one that brings together science, advocacy, and business with a shared mission. We must continue to push for better treatments, smarter policies, more proactive care, and safer, healthier lives for those living with food allergies. The momentum is real. The hope is real. But so are the stakes. We cannot afford to lose another life in the gap between knowledge and action. Avarie’s tragic story is a continuous reminder that while science moves us forward, it’s the stories and the lived experiences that keep us firmly on the ground.

Lianne Mandelbaum is a leading advocate for airline safety measures to protect food-allergic passengers. As president of No Nut Traveler and airline correspondent for Allergic Living, she drives policy change by collecting testimonials from food-allergic families to share with lawmakers, media, and advocacy groups. She can be reached on X @nonuttraveler, Facebook, and LinkedIn.

A sought-after speaker and media source, Lianne participated in a Medscape panel on emergency medical kits on planes and contributed global data on airline travel and food allergies at the GA²LEN Anacare Anaphylaxis & Food Allergy Forum. Her travel tips were also featured by Stanford’s Sean N. Parker Center for Allergy Research. She also appeared on Bloomberg to discuss the challenges faced by food-allergic travelers and advocate for policy changes.

Her advocacy led to a Department of Transportation ruling recognizing food allergy as a disability. She co-designed a global air travel and food allergy survey with Northwestern University’s CFAAR, which was presented at AAAAI and published in The Journal of Allergy & Clinical Immunology. She is the co-author of “Understanding Experiences, Barriers, and Facilitators of Safe Airline Travel—A Global Survey of Food Allergy Patients and Caregivers” (The Journal of Allergy & Clinical Immunology). She also contributed to “10 Practical Priorities to Prevent and Manage Serious Allergic Reactions: GA²LEN ANACare and EFA Anaphylaxis Manifesto” (Clinical and Translational Allergy) and “Ever Treat a Patient on a Plane? Why Med Kits Need an Update” (Medscape). Additionally, she collaborated with stakeholders to include anaphylaxis and necessary medications in the FAA Reauthorization Act of 2024.