Maria L. Acebal
Food Allergy Action Hero - 10/09/2012
ALLERGY FREE TABLE: This conversation with Maria was at the time when she was CEO of FAAN. Maria is no longer the CEO, and is now an active board member of FARE.
I have had the pleasure of knowing Maria for many years. We met at a food allergy support group in Rockville, Maryland; located in the Washington DC suburbs. It has been rewarding to me, as her friend, to experience her passion and drive to help children and adults who have food allergies and anaphylaxis. I spoke with Maria recently because I wanted to share with you how lucky we are to have her at the helm of FAAN.
ALLERGY FREE TABLE: Maria, years ago your daughter was diagnosed with a severe food allergy. Tell us about this experience and how it shaped your future endeavors with food allergies.
MARIA ACEBAL: When my oldest daughter Nina was almost two years old, she took a bite off the corner of a PB cracker that her little friend had shared with her at the swimming pool and within minutes her lips were double their normal size. Our family’s introduction to the world of food allergies involved a rush-to-the-emergency-room car ride and a double dose of epinephrine. Probably the scariest moment of my life was when the first dose of epinephrine they gave her at the hospital did absolutely nothing to stem the reaction.
MARIA ACEBAL: I think having seen anaphylaxis from the get-go, I knew this condition known as a “food allergy” was so much graver than the name let on. We weren’t talking about itchy eyes and a runny nose here, we were talking about life and death.
ALLERGY FREE TABLE: You wear two hats; one as a mother of three children, (one child with a severe food allergy), and the other as CEO of the Food Allergy and Anaphylaxis Network (FAAN), one of the most widely known non-profit organizations that offers food allergy education to people around the globe. Tell our readers how you manage food allergy safety at home since you are working outside of the home?
MARIA ACEBAL: Trust is the first word that comes to mind, and Family is the second. I rely so much on my mom and my sister. From the very beginning, they have been there with support and a willingness to take this on without a second thought. The babysitters who watch the kids when I’m at work are also very careful with the food that comes in the home and the food they will buy for Nina when they are out. And, the most important rule in the house: never be without epinephrine!
MARIA ACEBAL: On the school front, other food allergy moms or moms who have gone out of their way to be considerate regarding Nina’s allergy have been lifesavers when I couldn’t go on a field trip or attend a class party. I have to admit, though, I still breathe a sigh of relief when I get the call in the office that she’s home, safe and sound.
ALLERGY FREE TABLE: What tips can you give our readers who also work outside of the home yet have children who have food allergies?
MARIA ACEBAL: As FAAN has said for a long time, education is the key. Teaching our kids’ caregivers as well as our kids about how to read labels, avoid risky foods and risky situations, and know what to do in an emergency is the only way to have peace of mind. And, realizing that this education is an ongoing process that will take many, many conversations. A healthy respect for the allergy is another important goal because caregivers need to be mindful not only of our kids’ physical safety but their emotional well-being as well. Irrational fears or an overly restrictive code of conduct may cause a lot of unnecessary anxiousness. Finally, and I’ll say it again, epinephrine! It is our best friend. I make sure caregivers know not to fear it.
ALLERGY FREE TABLE: Now let’s talk about the other hat that you wear, CEO of FAAN. You were recently offered the CEO position while you were the General Counsel at FAAN. During your tenure at FAAN you must have met many people who are trying to be food allergy safe. Would you share with us a story or experience you have had while working at FAAN that touched your heart?
MARIA ACEBAL: I recently got a letter from an older sister who sent in part of her allowance as a donation to FAAN. In fact, we’ve now received two donations from her. She explained that she unthinkingly brought food inside her home that wasn’t safe for her little brother to eat. She wanted us to know how sorry she was and how much she valued FAAN’s work on behalf of kids like her little brother. And last year, at a Boston fundraiser hosted by celebrity chef and “FAAN Ambassador Who Cares” Ming Tsai, one of the teen honorees who have food allergies toasted her twin brother, calling him her “guardian angel” for all the times he looked out for her allergies.
MARIA ACEBAL: Siblings looking out for each other are so moving to me. I’ll never forget when my then three-year old daughter, Daniella, refused to participate in a bird feeder project that involved lathering peanut butter all over a banana. Her camp counselor kept telling her, “You’re not allergic, it’s ok.” But she held her ground, as did my four-year old nephew, Nico, who was in the same class! “It’s not safe for Nina; we don’t want to do it.” Blood is thicker than peanut butter, I guess :)
ALLERGY FREE TABLE: If you could tell our readers what you feel is one of the most important food allergy safety tips for keeping their children safe from a reaction what would it be?
MARIA ACEBAL: I am going to start sounding like a broken record! Epinephrine auto-injectors. Two. Always. Everywhere. No exceptions. Also, allowing your child as they grow up to take on more and more responsibility for their safety. You’ve got to let them learn from their mistakes while you’re still there as wingman. Have them practice carrying their own auto injectors (even if it means you have to go back to the movie theater bathroom to pick it up when you’ve already started driving home), reading labels, and explaining to restaurant staff they have food allergies. And, though you asked for only one, I can’t help but include a third and final thought: model today the behavior you want to see them adopt tomorrow. We teach more strongly with actions than words. If “just this once” we let them try a cookie from the buffet we don’t know is safe, or if “we’re running too late today” to go home to get your forgotten auto-injectors, then what will our kids do when they are young adults faced with the same choices?
ALLERGY FREE TABLE: We would like to encourage our readers to become a member of FAAN. Our family has been a member since we learned about our son’s food allergies and it has been a priceless resource.
Food Allergy & Anaphylaxis Network (FAAN) Membership Information