Eleanor keeps fighting for food allergy awareness and action
Eleanor Garrow-Holding’s life has changed more than she could have ever imagined over the past 18 years. She admits she was "scared to death" and overwhelmed by a lack of knowledge about food allergies when her 19-month-old son, Thomas, had a serious anaphylactic shock following one accidental bite of a pecan nut in 2004. Today, however, she is a respected advocate for food allergy awareness and action in the U.S and is President and CEO of the Food Allergy & Anaphylaxis Connection Team (FAACT).
After forming a support group in her native Chicago, Eleanor’s efforts helped food allergy management guidelines be signed into Illinois law. She subsequently advocated for the Food Allergy & Anaphylaxis Management Act at U.S. federal level. She has served on numerous panels and advisory boards, authored countless papers and articles, and presented at a number of national and regional conferences regarding food allergy education and advocacy initiatives. She now leads, develops, and implements a range of education, advocacy, awareness, and grassroots outreach initiatives for the food allergy community.
Perhaps her proudest achievement is FAACT’s Camp TAG (The Allergy Gang), a summer camp for children with food allergies and their siblings, which she founded in 2009. It now operates in four states, with hundreds of kids taking part each year, along with a virtual camp option.
Throughout this extraordinary personal and professional journey, one thing has remained constant: Eleanor is still the mom of someone with a food allergy. "That’s what’s inspired me," she says. "I was terrified when Thomas had his first allergic reaction – not only because of what was happening to him physically, but also because I didn’t understand what was going on or why."
"My initial response was to educate myself. But I soon realized that other families in the same position were looking for informational support as well. It was clear that more education and advocacy was needed. Everything I’ve done since has been driven by a desire to educate individuals and families about food allergies, which I had felt was lacking."
Eleanor is pleased to have seen so much change since the beginning of her journey. In her opinion, awareness and understanding of food allergies in both schools and society in general has greatly improved. To Eleanor, speed and accuracy of diagnosis, as well as an understanding of the difference between allergy and intolerance, is much better. There appear to be more resources and support programs than when she started her personal journey. While food allergy avoidance and epinephrine remain the necessary, primary standards of care, Eleanor believes that research and development may lead to treatments that reduce the risk of allergic reactions associated with food allergies. But there’s still a long way to go.
"The impact of food allergy is an ongoing issue, one that requires constant vigilance," she says. "Increasingly, however, we’re also finding at FAACT that some teens and young adults aren’t carrying epinephrine. One reason could be that they haven’t had a reaction for such a long time and think they’ll be OK. This could have serious consequences. COVID-19 may be having an impact, as well – with children and families being out of general circulation for so long, there needs to be a renewal of education and awareness…self-advocacy."
Overall, though, Eleanor is optimistic about the future. "The holy grail is a cure, obviously," she says. "Until then, we need to increase research so that there are more potential treatment options for food allergies. We need further improvement in the food allergy testing and diagnosis areas. And we must keep building awareness."
"It’s estimated that 32 million people in the U.S. alone have some kind of food allergy. We owe it to them to continue raising food allergy awareness and outreach initiatives."