Childhood food allergies are a growing concern in the United States, affecting an estimated 1 out of 13 children.¹ No matter the severity, food allergies can become seriously disruptive to families as they not only affect what foods can be eaten and what medications can be taken, but even what hygiene products can be safely used. Strict avoidance of the allergy trigger is the only way to prevent potentially life-threatening reactions, but this can be challenging, especially for parents who themselves may not have grown up with food allergies and must learn what the triggers are and how to avoid them.

Erin Malawer knows this well. When her infant son was diagnosed with an array of food allergies, she was emotionally overwhelmed and experienced mourning for the loss of her family’s way of life, including her vision of afternoons spent baking cookies with her child. But she was determined to find a solution that worked for her family. She decided that she needed to teach her son to respect the dangers of his allergies, but not live in fear of the world around him.

Erin’s experiences with food allergies inspired her career in advocacy. There were few food allergy resources or organizations available for families when Erin started her journey, which made her advocacy work that much more important. She is now the executive director of AllergyStrong, a non-profit organization whose mission is to help at-risk and underserved communities struggling with food allergies. Through AllergyStrong she helps bring education, awareness, and resources to individuals and families and the organizations that support them. She also co-founded the Food Allergy Collaborative, a coalition of food allergy advocacy groups in the United States. The combined efforts of multiple advocacy groups aim to bring about systemic change for patients and their families. In addition, Erin started Refinery Health, a digital health platform to deliver innovative and expert allergy guidance from food allergy specialists to patients and caregivers.

Congress added Food Allergies as a PRMRP Topic Area in fiscal year 2020 (FY20), which Erin was excited to see. She represents AllergyStrong as a PRMRP consumer peer reviewer, having participated in peer review three times, in FY20, FY21, and FY22. She reports that through her participation, she has learned much about the research that is being done to help people with food allergies. “Each year, I am fascinated by the many different and innovative ways researchers and scientists are approaching the treatment of food allergies,” Erin said. “I leave our panel discussions hopeful for the future and looking forward to reviewing the next slate of applications!”

Food Allergies remains a Topic Area for the PRMRP, and the voices of consumers like Erin – fueled by lived experience – are integral to the CDMRP peer review process.

“Consumer advocates should feel self-assured knowing they are the experts in their condition,” she said. “Nothing replaces lived experience. Your stories and input are invaluable in helping create a better future for others living with their condition.”

While food allergies have brought many challenges to her life, she says that they have taught her many things: patience, resilience, empathy – and how to cook. Her son’s food allergies no longer slow down her family, and she hopes that her advocacy work can make the lives of other families with food allergies easier too.

The views, opinions, and/or findings contained in this paper are those of the author(s) and should not be construed as an official Department of Defense position, policy, or decision.

References:

¹Food Allergies. 2020. U.S. Centers for Disease Control and Prevention Division of Population Health, National Center for Chronic Disease Prevention and Health Promotion. https://www.cdc.gov/healthyschools/foodallergies/index.htm.