Food Allergy Kids of Atlanta Impacts Families, Schools and Public PolicyTom Zimmerman | June 2013
Five years ago, Karen Harris knew next to nothing about food allergies. Today, she’s Georgia’s most dedicated advocate for children with food allergies, championing the cause in schools, the media, and the General Assembly. Read more about the amazing impact achieved by Food Allergy Kids of Atlanta just three years after its founding, even without full-time staff or significant funding.
Karen Harris (left) speaks with CBS Atlanta about how families with food allergies manage Halloween.
Although she didn’t realize it at the time, a new course for Karen Harris’s life was set when her youngest daughter Mika was born in 2007.
After spending the first six months of Mika's life in and out of the hospital and visiting nearly a dozen pediatricians without a diagnosis, Harris and her husband were finally referred to an allergist. There, Mika was diagnosed with multiple life-threatening food allergies.
Although the diagnosis meant that Mika would face a severely restricted diet and require continuous care, Harris was relieved to have a name, and a plan of attack, for what they faced as a family. Unfortunately, a souring economy meant her husband’s construction job was scaled back, leaving them financially unprepared for their new normal. Harris began working full-time to supplement the family’s income, and in the little free time remaining took to the internet with a slew of questions regarding her daughter’s severe food allergies. She educated herself through a national on-line support group, the Kids With Food Allergies Foundation, prior to locating a local Yahoo group. “I spent all my time on the computer asking questions to members across the nation via the Kids With Food Allergies on-line forums and resources,” said Harris.
"I had absolutely no idea that it would be this successful in three years. Day in and day out, I still don't know how we do it."
While the online experience was helpful, Harris saw that the need for local, engaging, in-real-life support was broad, deep, and growing.
“The Yahoo group wasn’t quite enough to help us,” Harris said. “I thought I should start something more formal that [those support group] members could benefit from.”
After 18 months of on-and-off planning—researching the market, drafting business and strategic plans, creating a website, pulling in a few trusted contacts to serve as board members—Harris announced the launch of Food Allergy Kids of Atlanta (FAKA) in April 2010 with bright orange cardstock fliers in two allergists’ offices. She’s been amazed to see it grow, in just three years, from two modest signs to a thrumming organization with more than 700 members, the attention of national media, a trusted educational ally in schools across Georgia, a research partner in Auburn University, and invitations to provide expert testimony in front of the Georgia legislature.
And she’s done it all in her free time, with bare-bones funding and no paid staff—just 12 passionate volunteers.
“I had absolutely no idea that it would be this successful in three years,” Harris said. “Day in and day out, I still don’t know how we do it.”
Educating, Advocating, and Curbing Constant Worry
Presently, FAKA offers four core services, each of which began on the ground and have since cascaded online: in-school education, membership/support groups, legislative advocacy, and community outreach.
To date, FAKA’s leading strategy has been to visit as many schools as possible, educating teachers, administrators, and nurses about the needs of children managing life-threatening food allergies, and the way to recognize and respond to emergency situations. Recent research, Harris noted, found that approximately two students in every U.S. classroom manages some sort of food allergy. She said the response to their educational programs has been overwhelming: “School staff members are the people who care for these students when they aren’t home and need support. We are able to come in, build a relationship with school staff, open ourselves to questions, let them practice with EpiPens,” the emergency hypodermic that halts serious allergy attacks, “and give them the education and tools they need to support these students and families.”
In fact, once Harris and her team make the presentations at schools, they donate the educator training program and all their books, notes, and handouts as a permanent reference resource for the school.
Food Allergy Kids of Atlanta also offers membership free of charge to children or families managing food allergies, a decision Harris made despite pressure to charge membership fees: “It’s expensive enough as it is to buy specialty foods for children, and we don’t want to exclude anyone by adding another cost to that,” Harris said. “This also allows us to create a larger member base, and reach out for more support from the companies who make specialty foods, and be more competitive for grants.”
Members gain access to support group meetings and presentations geared toward the issues their families struggle with. Harris noted that some families drive several hours, and even cross state lines, just to attend these meetings.
Additionally, FAKA plans Easter and Halloween events for members, both holidays that can be especially isolating for children facing food allergies, and especially nerve-wracking for their parents. Harris said it gives families a chance to get out during the holidays without the usual worries: “You’re not constantly worrying about what your child is going to touch, what your child is going to eat, whether they’ll put their hand in their eye after touching food. During our Halloween event, one mom asked ‘Is this what normal people feel like every day?’”
In the three years of FAKA’s existence, Harris has also become a powerful voice for these children in the Georgia legislature. Most recently, she testified in three hearings in support of legislation (since passed) allowing schools to stock epinephrine and administer it to students in anaphylactic shock, whether or not that student has a prescription—an especially important provision given that 25% of first-time allergic reactions to food happen in schools, and that a minute’s delay in treatment can mean the difference between life and death. Over the past two and a half years in Georgia, three students have died following allergen exposure. In all three cases, their epinephrine auto-injectors were not immediately accessible and a backup device wasn’t available. Forsyth County Schools, one of two Georgia systems that already stock epinephrine in schools, has used them eight times in the past three years.
“I’m very proud of our impact in schools,” Harris said. “Schools are stocking this medication, currently free for all eligible private and public schools in GA through the EpiPen4Schools Program, changing policies, and taking steps to be proactive and genuinely care for these children.”
Food Allergy Kids of Atlanta is also building awareness outside their main programs and services. They celebrated Food Allergy Awareness Week in Georgia May 12-18, this year with an official proclamation by Governor Deal, a new partnership with Georgia CPR, and increased outreach in the community and the media. Last year, Harris was also featured on Trace Adkins' Great American Hero television show, in which the singer/songwriter, whose daughter also manages life-threatening food allergies, travels the country spotlighting local heroes.
Georgia Governor Nathan Deal meets with Food Allergy Kids of Atlanta upon signing the proclamation for Food Allergy Awareness Week 2013.
Despite unsteady funding, Harris and her volunteers are committed to growing and refining their programs: she continues to bring in new players, including board members, an advisory council, and an attorney to reevaluate the initial strategic plan. She’s also planning local chapters across Georgia to replicate what they’ve accomplished in metro Atlanta for families and schools outside the city.
"It is essential for a family to have this kind of support when they go on this journey with their child."
In addition to providing a much-needed resource for families across Georgia living with food allergies, Harris and her husband continue to manage Mika’s health as well. Now 5 years old, Mika eats just 10 different foods; the majority of her daily calories come from 60 ounces of medical-grade liquid nutrition. Harris continues to work full-time on the weekends, dividing the balance of her week between work for FAKA and homeschooling Mika. Fortunately for her, running FAKA is not just rewarding, it also helps support her own family’s struggle: having created a formal support system, as well as an education and advocacy outreach program, she carved out the perfect space to grow a close-knit, highly motivated, and extraordinarily loyal community that’s just as valuable to her as it is to the rest of its members.
“We’re very new, and it can be overwhelming,” said Harris. “It’s wonderful and it’s scary. But it is essential for a family to have this kind of support when they go on this journey with their child.”
Tom Zimmerman is a Communications Coordinator at the Georgia Center for Nonprofits.