By Hope Ditto. Every three minutes, food allergies send an American to the emergency room. Activities that most of us take for granted — like sitting in a restaurant that uses peanut oil or indulging in a birthday cupcake from a bakery that uses nuts in some of its treats – could be harmful, if not fatal for the millions of people who suffer from food allergies. Families must take extra precautions to ensure children with food allergies do not face what could be life-threatening exposure to foods like milk, eggs, wheat, soy, shellfish, seeds and nuts. Sometimes a child doesn’t even have to eat the allergen to become ill and all it takes to cause a reaction is light physical contact, such as spilling a glass of milk on a child with a dairy allergy. Not surprisingly, food-allergic children often feel a sense of isolation and embarrassment in social situations.
The prevalence of food allergies has been on the rise in recent years. According to a national study of 38,480 families in 2011, one in 13 children has food allergies compared to one in 25 children with food allergies in 2008. That’s 5.9 million children in America suffering from at least one food allergy, or two children in every classroom, with more than a third of them considered severe or life-threatening.
Mary Jane Marchisotto, the executive director of the Food Allergy Initiative (FAI), an organization dedicated to curing food allergies, and a Disruptive Woman, is on a mission to make life safer for those suffering from food allergies and is having some real success.
In honor of FAI’s many outstanding achievements, the organization, under Marchisotto’s leadership, was awarded the Paul G. Rogers Distinguished Organization Advocacy Award by Research!America at their annual Advocacy Awards Dinner last night – a commendation many consider to be the highest honor an organization can receive in medical and health research. Past recipients have included the March of Dimes, Genetic Alliance and Juvenile Diabetes Research Foundation International. The award, established in 2007, was named in honor of the late Paul Rogers, a former congressman known on the Hill as “Mr. Health” for his support of the National Institute of Health and other health care and health research measures, and had served as Research!America’s board chairman, and its chairman emeritus.
To the health policy world, receiving the Paul G. Rogers award is a testament to all that FAI has accomplished and the remarkable progress they have made in advancing food allergy research, education and awareness. To Marchisotto, it was yet another opportunity to get FAI’s message in front of legislators, policy makers and leaders in the healthcare and life sciences sectors and other advocacy organizations and to increase their visibility among these audiences.
Perhaps, then, it is not surprising that, when asked what FAI accomplishment she is most proud of, the award doesn’t come up.
“If I think about what we’ve accomplished, one of the things I’m most proud of is how we’re systematically changing the public’s perception of food allergies,” Marchisotto said. “We’ve succeeded in changing the national dialogue about food allergies. We’re hearing less and less about overprotective parents and more about the real dangers of food allergies, the devastating impact they can have on families’ lives and children’s psychological standing and, increasingly, people are talking about the hope for a cure.”
In its relatively short existence (the organization will hold its 15th annual gala in December), FAI has made tremendous headway towards not only by changing the dialogue about both the personal and public health impacts of food allergies, but supporting a series of pre-clinical and clinical studies aimed at improving diagnosis and treatment for food allergy sufferers, all the while, pursuing the ultimate goal, a cure for food allergies. FAI has educated constituencies by increasing media coverage about the prevalence and severity of food allergies and advocating at the state and federal levels to improve safety for children with allergies in schools.
Its contributions to research on food allergies are especially noteworthy – early on FAI worked with NIH to establish a public-private partnership for food allergy research. In addition to funding basic and clinical research, FAI has supported research to define the scope of the problem and its various impacts (economic, psychological, etc.). FAI used this data to advance understanding and raise awareness of the problem, thus enabling them to successfully advocate for additional funding needed to support some of the larger studies. To date, FAI has committed almost $77 million towards the fulfillment of its mission. FAI is the world’s largest private source of funding for food allergy research.
To say that Marchisotto is relentless in her driving efforts towards accomplishing FAI’s mission and finding a cure for food allergies is an understatement. As Marchisotto herself puts it, “Ultimately, we would like to put ourselves out of business.” Her commitment to both FAI and the broader food allergy cause is palpable in conversation – despite, or perhaps, in spite of, her unconventional career path.
Marchisotto came to head FAI by way of Wall Street – she spent 25 years in the financial sector, serving as an executive director at Morgan Stanley and a BlackRock director before becoming FAI’s executive director. While her professional experience may be untraditional for the head of a nonprofit, Marchisotto explains that her financial sector experience has proven itself advantageous – shaping her approach to running FAI, where Marchisotto has – from her first day, focused on implementing best practice policies and procedures that she says ensure success. It’s hard to argue with her on that, considering the results her approach has produced since taking over as ED two-and-a-half years ago. Last April, FAI convened the first ever major research retreat, with the goal of developing a consensus on the direction of food allergy research among the more than 40 scientists, senior government officials, and industry representatives who met at Harvard Medical School. Still, Marchisotto is quick to point out that the work is far from over, and it won’t be until the dreams of FAI’s founders – a group of concerned parents and grandparents – have been realized, and a cure has been developed.
As Marchisotto explains, “Until we find a cure, we’re going to stick with our game-plan (developed at the research retreat) and remain focused on our goal and continue to support research that is constructive and will educate others.”
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