The Food Allergy & Anaphylaxis Connection Team (FAACT) is on a mission to educate, advocate, and raise awareness for people and their families affected by food allergies and life-threatening anaphylaxis. Whether it’s keeping children safe at school, responding to food allergy bullying, traveling, preparing for college, dealing with workplace issues, working with industry partners, or simply taking the family out for dinner, FAACT has the facts everyone needs to manage food allergies and stay healthy.
Eleanor Garrow-Holding is FAACT’s president & CEO and was inspired to start working in the food allergy community after her son, Thomas, was diagnosed with life-threatening food allergies to several common foods. Not only has Eleanor worked, educated and advocated for the food allergy community for more than 17 years, she currently serves on several boards, including the National Peanut Board’s Food Allergy Education Advisory Council.
As CEO of FAACT, Eleanor provides leadership, development, and implementation for all of FAACT’s initiatives and programs, including Camp TAG (The Allergy Gang) – a summer camp for children with food allergies and their siblings that Eleanor founded in 2008.
The National Peanut Board talked with Eleanor about her vision for starting Camp TAG, how her team pivoted because of the 2020 pandemic and her plans for Camp TAG’s future.
NPB: What is Camp TAG?
Eleanor: Camp TAG provides a safe place for children with food allergies, eosinophilic disorders, FPIES, Celiac disease, and asthma and their non-allergic siblings to have fun – with no worries about allergic reactions – and meet other children who share similar experiences. Camp TAG provides peer-to-peer networks, support, gaining independence and confidence. We all have the opportunity to be with others who live it and get it. It is a bonding and empowering week for all campers and counselors, including parents.
The camp is 95 percent fun and 5 percent educational, with age-appropriate activities and games each day on food allergies, anaphylaxis, nutrition, the emotional impact of living with food allergies (for children with food allergies and their families), and how to stay safe at school and at home. The curriculum was designed and reviewed by FAACT’s Medical Advisory Board.
NPB: How did Camp TAG start?
Eleanor: I founded Camp TAG in 2008 when I was not able to find a day camp that would accommodate my son, Thomas. The camp sites were nervous about administering an epinephrine auto-injector and could not guarantee there would not be any risk of cross-contact with Thomas’ allergens. Thomas has life-threatening food allergies to most tree nuts, and has outgrown almond, peanut, and sesame, and is in remission of eosinophilic esophagitis triggered by milk and wheat. He also has asthma and environmental allergies to cats, dogs, and mold.
My daughter, Anne, has no allergies at all, but is still just as affected. They are the reason that launching a camp where both could participate and have fun, while staying safe, was important to me. And I now know it is important to many other families.
NPB: What do campers typically do at Camp TAG?
Eleanor: Activities each day will include camp games, ropes course, climbing tower, canoeing, arts and crafts, music, swimming, Ga-Ga, archery, mine chutes, giant swings, and field sports such as soccer, basketball, baseball, flag football, lacrosse, food allergy education, and so much more.
NPB: The summer of 2020 has been different for everyone because of the coronavirus. FAACT implemented Virtual Camp TAG. Even though registration is now closed, tell us about it.
Eleanor: This summer, virtual Camp TAG has been more popular than I thought it would be. We have Zoom sessions led by FAACT staff and teen counselors with one session per week for each age group over five weeks. We will cover an education activity, a craft, and a camp game and Camp TAG song.
Each camper receives a Camp TAG box with five craft kits, a Camp TAG Virtual 2020 t-shirt, Auvi-Q trainers, Cybele’s Free to Eat Chocolate Chip Cookies, and other fun goodies. There’s even a bonus sixth session for Family Day!
When we are in person, Camp TAG usually has anywhere from 40 to 60 campers and about 15 to 18 teen counselors. We have 132 campers and 28 teen counselors from 32 states and Canada. So, we are really pleased that we were able to offer a virtual summer camp for many families.
NPB: What are the plans for 2021?
Eleanor: We are excited to celebrate Camp TAG’s 10th anniversary in 2021! We plan to return to in-person camps next summer in Ohio, Tennessee, Colorado, and New York. All details with locations and dates are updated on our website at FoodAllergyAwareness.org/programs. Registration opens January 4.
NPB: You mentioned the heartwarming family stories you’ve heard over the years. Could you share a few?
Eleanor: Yes! Here are some favorites.
“…It was the most inspiring, empowering experience we’ve ever been able to provide [our daughter] with. It was the first and probably the only program we have ever sent [our daughter] to that we didn’t have to even worry about the food situation, and for [her] younger brother, it was a good opportunity to teach food allergy awareness and safety.” ~ Julie
“I have to say that Camp TAG is not only great for the kids, but for us parents as well. It means so much to me to meet other parents of food allergy kids who know what life is like trying to keep our kids safe! Thank you so much for all your hard work!! This is the best week ever!” ~ Lisa
“Camp TAG is so amazing in so many ways. It’s already made a huge difference in my son’s life. We are excited for the rest of the week …I loved how the kids at my table were all comparing their allergy bracelets and loving them like accessories and not having to feel different – instead a new sense of belonging!” ~ Kim