How EAT is trying to End Allergies Together
Over 17 million people suffer from food allergies, and one in 12 children are born with food allergies. With those staggering figures, it’s surprising that there is a $400 million funding gap in research.
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. Lindsay was in anaphylactic shock and her system was shutting down. The call to 911 and the ambulance team saved her life.
The following week we visited our local allergist who performed skin prick testing or (SPT) which demonstrates an allergic response to a specific allergen and a blood test that measures the amount of IgE which is the “immunoglobulin E,” the antibody that triggers food allergy symptoms.
Each phase of life has presented its own unique challenges.
When Lindsay was an infant it was very difficult to leave her side. I was worried that someone would feed her a snack or the wrong sippy cup and miss the reaction thus putting her in grave danger.
During Lindsay’s toddler phase, it was hard to join playgroups as common snacks like Goldfish, Doritos and Pirate Booty were everywhere and we were told that peanut or cheese dust could lead to a reaction if inhaled. At this age Lindsay did not understand why she could not eat the same food as all of the other children. It was heartbreaking. I always travelled with my snacks and where possible I called all of the moms ahead of time and asked if I could bring Lindsay’s snacks for all of the children.
Then the dreaded school phase arrived. How could any school be equipped to ensure no one spilled milk on Lindsay or shared their peanut butter sandwich? Who could keep learning spaces and educational materials clean and free of allergens? We were blessed to find schools that partnered with us to keep her environment clean. While Lindsay was able to consume snacks that did not contain cheese dust (Doritos, Pirate Booty etc.) and nuts along side her friends, her schools agreed to wash all of the children’s hands after any snack or meal.
Eating is a part of everyday life and a way of life
Next came the birthday party phase, where pizza and cake were standard fare. This was extremely hard because birthday treats smell great and looking so inviting. For a while we avoided the parties and then she wanted to participate so I brought all “Lindsay’s foods.” I would make Rice Krispie bars with dairy-free margarine or buy her favorite dairy, egg and nut free tree treats.
And when she was 7 years old, she was a Girl Scout and needed to sell cookies that she could not even eat. Or Church, where she could not take communion if we did not have the right bread to substitute.
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.
As frustrating and scary as it is for Lindsay, her older sister Amanda developed a food allergy when she was 6 (she is now 14) to raw fruits and vegetables and when combined with pollen it is almost unbearable in the springtime. For the most part, we separate Lindsay’s food from anything containing dairy, eggs and nuts. She has had her own shelf with her safe snacks!
A trace amount can be anywhere
Food allergies are incredibly dangerous when eating away from home. One server didn’t wash his hands after touching cream cheese and picked up Lindsay’s egg, dairy and nut free bagel to put it in the bag. Another time, a server mistakenly put a nut contaminated vitamin supplement into her fruit shake. Both accidental exposures required 911 calls and ambulance teams to get her safely to the hospital. We have a few restaurants that we feel safe visiting as their chef and entire team are aware of Lindsay’s allergies and they are vigilant but for the most part we do not go out to eat with Lindsay for fear of a food arriving containing an allergen we could not see!
Eating is a lifestyle, and it dictates everything we do as a family
Traveling has been the hardest part of living with food allergies. I have spent a decade of pre-boarding planes to wipe down Lindsay’s seat and surrounding areas to clean off potential allergens. I have pleaded with countless airline teams to make announcements and to not serve nuts on the plane. There is nothing scarier than the thought of anaphylaxis at 30,000 feet. We have only stayed in hotels with kitchens so we can make all of her food.
Do not let your child be defined by food allergies
My dear friend told me 10 years ago, do not let your child be defined by her food allergies.
Lindsay dove (literally) into gymnastics 6 years ago. She joined a gym that embraced her food allergies and did everything possible to keep her safe. Now at 12 years old, Lindsay spends 15 hours a week practicing and competing. Lindsay is a gymnast who happens to have food allergies. She is not the “allergic kid” in the corner.
We need a cure
Food allergies are an epidemic affecting 1 in 12 children in the United States and it is doubling approximately every 10 years. Two years ago I met Elise Bates at a local 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. Within a year, our families founded End Allergies Together, Inc. (EAT), a 501(c)(3) nonprofit organization solely dedicated to funding food allergy research.
E•A•T is committed to finding a cure for food allergies by directly funding the researchers who strive to find new treatments and solutions for this growing epidemic. E•A•T will not venture into other activities such as advocacy, education, awareness, support, and product development as there are other organizations focused on these areas. However, the food allergy research gap is so large that our only job at E•A•T is to relentlessly raise money for food allergy research. We have made some great strides in the past year:
- EAT has underwritten our expenses so that 100% of net proceeds can fund the most promising research.
- EAT’s growing medical advisory team is comprised of
knowledgeable scientists and physicians who are leaders in the field but not conducting their own studies. This ensures an objective funding process.
- EATwas launched May 1 2015. We raised $350,000 in our first 6 months and are already in the process of granting it out.
- EAT just launched a “Do Your 17” campaign to coincide with Allergy Awareness Month, starting May 1, 2016, in honor of the 17 million Americans who suffer from food allergies. People can do anything they love (yes anything) 17 times, minutes, laps, miles etc. … for the people they love with food allergies to help fund a cure. People are encouraged to get friends and family to pledge support and raise money. Proceeds go towards research to help accelerate new treatments and solutions for food allergies.
- EAT has an official presence on the east coast (NYC area) and mid-west (Chicago area) and is expanding quickly.
E•A•T was founded on the premise that everyone’s contribution, big or small, is crucial. If we all do something small, collectively we can do something extraordinary.
Our hope and dream is that someday, Lindsay will be able to live a life where she can just EAT. In the meantime, we are grateful for her friends, family, coaches and teachers who keep her safe, every day. And, for the researchers who dedicate their careers to helping find a cure.
