inspired to end allergies together
The Sean N. Parker Center for Allergy and Asthma Research at Stanford University is very grateful to the many individuals and families who have participated in clinical trials at the Center. Each of our participants has helped advance research and has brought us one step closer to a cure. Our trial participants and their families have also helped in numerous other ways – by spreading awareness and educating the public about food allergies, advocating for the safety of individuals with food allergies in schools and restaurants, and supporting research with fundraising efforts.
Kim Hall has worked tirelessly to ensure a safe environment for her daughter Lindsay, who has severe allergies to eggs, milk, and many nuts. She also co-founded the nonprofit organization End Allergies Together (E•A•T), which is dedicated to accelerating new treatments and solutions through funding food allergy research. We thank her for her personal dedication and for helping accelerate food allergy research and are pleased to share her family’s experience with food allergies and her journey towards creating E•A•T, in this interview.
How have food allergies affected your family’s life?
I am a parent of a child with severe food allergies. My daughter Lindsay was 11 months old when I first fed her scrambled eggs with cheese. She immediately broke out in hives, threw up, and turned blue. The call to 911 and the ambulance team saved her life. The next day, Lindsay was diagnosed as being severely allergic to dairy, eggs, and nuts. We were told that Lindsay had gone into anaphylactic shock after eating the eggs and cheese, causing her system to shut down. We also learned that there was no treatment for food allergies and that the only way to keep Lindsay safe was to have her avoid offending foods and to make sure that she carried epinephrine for use in case of a severe reaction.
Through the years, each phase of life has presented its own unique challenges. During Lindsay's toddler phase, it was hard to join playgroups as sippy-cups of milk and dusty cheddar cheese Goldfish were everywhere. Next came the birthday party phase, where pizza and cake were standard fare. And when she became a Girl Scout, she had to sell cookies that she could not eat.
Lindsay started to resent her allergies. "Why do I have food allergies? It is so unfair. It is so scary. It makes me feel different, sad, uncomfortable, and left out," she would say. Then the dreaded school phase arrived. We were lucky to find schools who partnered with us to keep her safe.
But, as other families in our situation know all too well, completely avoiding food allergens is very difficult. Despite our best efforts, since her first episode, Lindsay has had two more anaphylactic reactions when she ate foods contaminated with minute amounts of food allergens.
I began to resign myself to the notion that we would always have to live with food allergies and in the shadow of fear of the next anaphylactic reaction due to an accidental ingestion. However, in 2013, after reading an article in the New York Times, I began to have a glimmer of hope for a treatment for food allergies.
Would you share the pivotal moment when you began to have a glimmer of hope?
In March of 2013, a friend sent me the New York Times article, “Can a Radical New Treatment Save Children With Severe Food Allergies?” This article changed the course of our family’s and Lindsay’s life forever. It told the story of Tessa Grosso, whose story mirrored ours – but 2,544 miles away. Tessa lived with the same life-threatening food allergies and experienced the same challenges as we did on a daily basis. The article went on to explain how in April 2009, Tessa’s mother, Kim Grosso, approached Dr. Kari Nadeau after attending her lecture on using oral immunotherapy to desensitize children with severe peanut allergies and asked her what she could do for her daughter who was “fatally allergic to major food groups.” To this day, I love Kari’s response, “I am not sure but I promise we will figure it out.” Later that spring, we saw Kim and Tessa on television talking about how Tessa had been desensitized to 5 allergens at the same time. Tessa then started eating whipped cream on TV right before our eyes. That visual and their story changed our lives. After I reached out to Dr. Nadeau, Lindsay became the first Connecticut resident to be screened for the multi-allergen, Xolair desensitization study – the first step in our journey to help find a cure for food allergies.
Through your journey so far, what challenges and obstacles to a cure have you seen?
In the fall of 2013, during the initial screening process at Stanford, I met Dr. Nadeau and her team of incredibly caring, smart and competent nurses and doctors — all dedicated to uncovering better treatments for children with food allergies and asthma. But, when I inquired about the timing of the multi-allergen study, I learned that Stanford needed to first raise $4.5 million dollars to fund the clinical study that would treat 60 children. I was speechless. I couldn’t believe research costs were so high. My eyes were opened. Dr. Nadeau dedicated 3 years of her life without taking a salary to put in motion an oral immunotherapy treatment that is now being tested throughout the country. By doing so, she challenged scientists and doctors around the world to develop new treatments for food allergy. I knew at this point in my life that I also needed to pitch in and make a difference and ultimately help find a cure for food allergies.
How did you decide to “pitch in” and make a difference?
Around this time, I met Elise Bates at a local Connecticut food allergy meeting. Not only did Elise share my passion to find a cure because of her own daughter's life-threatening allergies, but she also had a vision of how to make a difference. We looked at the numbers together — food allergies have become an epidemic affecting 1 in 12 children and yet there was an annual estimated research funding gap of $400 million dollars. We both wanted to find a way to fund food allergy research.
Within a year, our families founded E•A•T, a nonprofit organization solely dedicated to accelerating new treatments and solutions through funding food allergy research.
How is the mission and vision of E•A•T unique and what is its impact?
E•A•T launched in May 2015. It is unique in that it is solely focused on raising money for the most promising research in food allergies. In 2016, it underwrote expenses so that 100% of its net proceeds went directly to research. In just one year, E•A•T has been able to garner national and local media coverage including an interview on the TODAY show, which helped raise awareness of the challenges of living with food allergies and the need to fund researchers seeking cures.
We are proud to have launched a food allergy research grant process. Grants are evaluated by our Medical Advisory Board, which is comprised of scientists and clinicians who are leaders in the food allergy field, but who are not conducting their own studies. This year, the board made a unanimous recommendation to fund the following 3 studies from a large pool of submissions:
- Biomarker Research: Dr. Jonathan M. Spergel (Perelman School of Medicine at the University of Pennsylvania) and Dr. Paul J. Turner (Faculty of Medicine, Imperial College London, United Kingdom) will conduct a study titled, “Molecular Gene Expression During Allergic Reactions to Food: Identifying Signatures Which Correlate with Severity of Reaction,” to evaluate genetic biomarkers for determining how severely individuals with food allergies will react on ingesting the food allergen.
- Microbiome Research: Dr. Cathryn R. Nagler (University of Chicago Pritzker School of Medicine) will conduct the following study, “Characterization of Prebiotic Dietary Fibers to Prevent or Treat Food Allergy.”
- Oral Immunotherapy Research: Dr. Kari Nadeau and Dr. Sharon Chinthrajah, both from the Sean N. Parker Center for Allergy and Asthma Research at Stanford University will conduct the study titled, “Improving Safety for the Food Allergy-Asthma Syndrome.”
Do you have any final thoughts you would like to share?
I want to emphasize how grateful I am to Dr. Nadeau, Kim and their entire team for taking the leap of faith and working tirelessly to move us all closer to better treatments and solutions for food allergies. Their passion and dedication to finding a cure inspired me to want to do the same! I am also so thankful for having partners in the Bates family — we worked tirelessly to make E•A•T a reality and now we lead an exciting and fast-growing organization that is making a real difference for our children.
By Vanitha Sampath
Vanitha Sampath received her PhD in Nutrition from the University of California at Davis. At the Sean N. Parker Center for Allergy and Asthma Research, as a medical writer and content manager, she enjoys being in the midst of groundbreaking research in asthma and allergy and is committed to communicating the scientific advances of the Center and spreading awareness of its mission and vision.