Living with food allergies can be difficult for families. Day-to-day life can become more challenging as reading labels, carrying around epinephrine auto-injectors everywhere and checking ingredients become the norm.
While families are not defined by their food allergies, for these three women, the impact of food allergies on their lives sparked them to create non-profit organizations and new products, improving the lives of others with this condition and preventing future allergies.
Emily Brown, Founder and CEO of Food Equality Initiative
Prior to having her daughter, Emily Brown was aware of food allergies. While teaching pre-school, she had a student with a peanut allergy. Although his condition made her nervous, she did everything she could to protect him while he was under her care. But even with this exposure, nothing prepared her for managing a food allergy in her home.
Brown learned her daughter was allergic to peanuts, eggs, dairy, wheat and soy when she had an anaphylactic reaction to peanut butter when she was 1 year old. Brown and her husband quickly became overwhelmed with the cost of allergy-free foods and decided to get assistance from the Women, Infant & Children (WIC) program to help feed her daughter. However, she soon learned that many of the foods offered by WIC her daughter was unable to eat due to her allergies. Brown moved from WIC to food pantries but again saw how her daughter’s allergies prevented her from being able to eat the food offered, leading her to realize there is no safety net for low-income people diagnosed with food allergies.
Brown founded the Food Equality Initiative (FEI) in 2014 to increase access to allergy-friendly and gluten-free foods to individuals who need them most.
“I was really inspired by my children,” Brown said. “I wanted to make it easier for all families to find the safe foods they need to manage food allergies, regardless of income. I’ve always been a civically engaged person [and] starting FEI is an extension of my efforts to build a better community.”
In 2015, FEI launched the nation’s first allergy-friendly and gluten-free food pantry. During the last review of the WIC food packages, FEI coordinated several comments campaigns and submitted letters to the Institute of Medicine review committee. These efforts highlighted the need for a substitution for egg and fish in the food packages, which is now available.
“Initially, my goal was to amend the WIC food packages to include more allergy-friendly options,” Brown said. “I quickly realized that changing the big ‘P’ policy is a long game. So, I transitioned our focus to develop a direct-services approach and build the case through multi-sector collaboration.”
While Brown is celebrating this instrumental policy win, she is still working toward future goals. FEI is focused on growing and expanding its direct-to-door supplemental nutrition program. She also plans to continue to build cross-sector partnerships through the 7% Fund and Coalition to end racial and economic disparities.
Eleanor Garrow-Holding, President and CEO of Food Allergy & Anaphylaxis Connection Team
Eleanor Garrow-Holding’s son Thomas was 19 months old when he had an anaphylactic reaction to pecans. Prior to his reaction, Garrow-Holding had never known anyone with food allergies and, despite her health care background, did not have much knowledge about food allergies.
“It was seven minutes from that one bite to the emergency department (ED) entrance,” Garrow-Holding said. “Thomas was completely unrecognizable to me: hives from head to toe, eyes swollen shut, lips swollen, coughing, gasping for air. The ED doctor took him from my arms. They administered three doses of epinephrine, antihistamine, prednisone, initiated heart and lung monitors and oxygen per mask. It was about three hours later that Thomas started to look like himself.”
At age 3, Thomas was diagnosed with asthma and eosinophilic esophagitis (EoE), and after two years of testing, it was determined Thomas’s triggers were milk and wheat.
“After Thomas was diagnosed, I wanted to learn everything related to food allergies and anaphylaxis and educate our family members and friends,” Garrow-Holding said. “Because there was not a support group in the suburbs of Chicago, I started Parents of Children Having Allergies (POCHA) of Will County. It was great meeting other families who share the same life experiences.”
Garrow-Holding also started volunteering to fundraise for food allergy research and advocating for state legislation focused on food allergy guidelines in schools and insurance coverage for elemental formulas.
She was offered a position with a national organization to lead their education and outreach division four years after she started volunteering at a state level. After four years in that position, Garrow-Holding resigned and launched Food Allergy & Anaphylaxis Connection Team (FAACT).
FAACT was created to fill the gap for food allergy and anaphylaxis education, awareness and advocacy. It offers school and restaurant education, civil rights advocacy in schools, awareness programs, resources and more. FAACT pr
ovides peer support and programs for families, caregivers and individuals managing food allergies on a day-to-day basis.
Garrow-Holding wants other parents who have a child struggling with food allergies to know that there is always hope. Whether you are newly diagnosed or still trying to manage and navigate, the support and education are there for you and your family.
“I found my passion the day Thomas had his first reaction,” Garrow-Holding said. “I knew I would not let his food allergies define him or hold us back from living life.”
Catherine and J.J. Jaxon, Co-Founders and Co-CEOs of Mission MightyMe
When Catherine and J.J. Jaxon’s daughter was born, the common medical guidance was to avoid giving peanuts and other potentially allergenic foods to babies. Catherine and J.J. followed this advice and were shocked when their daughter had a severe reaction to a walnut at age 3.
“I became a journalist because I loved researching and learning everything there was to know about something I previously knew nothing about,” Catherine said. “That’s exactly what happened after our oldest daughter was diagnosed with food allergies. I dug in and decided to learn everything I could.”
This thirst for knowledge is what led Catherine to Dr. Gideon Lack’s groundbreaking prevention clinical trial in the New England Journal of Medicine. The LEAP Study by Dr. Lack found that feeding peanut foods to high-risk infants could help reduce the likelihood of developing peanut allergy by 86%. This gave the Jaxons hope they could potentially prevent their new baby from developing a food allergy like his older sister, but they found early introduction difficult, because whole nuts are a choking hazard for babies and the baby food industry avoided common allergens like nuts and peanuts.
“Wanting to do everything exactly right, we reached out to our friend Todd Slotkin, who co-founded the food allergy nonprofit, FARE, and Dr. Gideon Lack, who led the LEAP study, which proved that peanut allergy prevention was possible,” J.J. said. “Both Dr. Lack and Todd clearly saw the need for good product options for parents that would make following the new prevention guidelines possible. So, we combined forces and launched Mission MightyMe together.”
An early-introduction product was under development by Dr. Lack for two years and in March 2019, Mission MightyMe launched their first product, Proactive Peanut Puffs, in March 2020. Mission MightyMe expects to launch Proactive Multi-Nut Puffs in 2021 that contain a collection of tree nuts.
“MightyMe was born out of our own frustration over not being able to find any baby-friendly products that made early introduction easy with our third baby,” Catherine said.
“It hasn’t been easy because we are going against the grain of the entire baby food industry, which has been entirely nut-free for decades,” J.J. said. “But we continually hear from customers who are grateful for our product and mission, which makes it all so worthwhile.”