The Story Behind Kids With Food Allergies

Serendipitous is how parent Lynda Mitchell describes the origin of Kids With Food Allergies. In the late 1990's, Mitchell had met another mom, Susan Chen, online. Chen, a librarian, had a child allergic to peanuts, and Mitchell's son had multiple food allergies. Both had spent their children's early years traversing the harrowing world of food allergies with little support or information, and were nervously preparing for their kids to enter kindergarten. Most families with kids starting school are concerned about things like which crayons to buy or whether their children make friends. Mitchell's and Chen's worries were far bigger -- how to keep their sons safe in school while managing their life-threatening allergies to foods.

Chen offered to start an e-mail list to connect a few parents of kids with food allergies they knew to share recipes and ideas about sending their children off to school safely. On September 25, 1998, POFAK ™ (Parents of Food Allergic Kids) was born.

In short order, solely by word of mouth, hundreds of parents started to find POFAK, seemingly in lockstep with the rise in childhood food allergies - and the increasing use of the Internet by caregivers and families seeking health information and support. It was clear that POFAK was filling a critical need by providing peer support and information sharing not found elsewhere on the Web.

In 2000, Chen moved on and Mitchell assumed ownership of the POFAK ™ mailing list; membership continued to grow to more than 1,000 members. Mitchell's research of Internet trends while finishing up her graduate degree in 2003 confirmed that the Web would likely be a key information and support resource for families raising children with food allergies. "I could foresee that POFAK would continue to grow and that we had to evolve to better meet the needs of our expanding membership," Mitchell explains. "As an online community with a unique approach to information sharing, it seemed the best course to enable this growth was to become a nonprofit and create a Web site exclusively dedicated to POFAK."

As Mitchell's first step, she laid out the early stages of a plan including surveying the current membership to find out what needs they had that POFAK could fill, then inviting input from a task force comprised of active POFAK members and volunteers including Veronica Broadley, another parent volunteer who was co-managing POFAK at the time. Next, Mitchell worked on incorporating POFAK ™ as the nonprofit organization "Kids With Food Allergies, Inc.," filing documents with the IRS. She also appointed the founding board of directors, including Kim Khosla, M.D., as Medical Advisor, who formed a Medical Advisory Team to provide guidance and oversight. All worked together to create POFAK's new online home at www.kidswithfoodallergies.org, successfully launched on February 28, 2005.

"Although I knew our membership would grow once we moved to our own Web site, the fact that we will have 10,000 members by the end of 2007 is beyond our wildest expectations," Mitchell says. "Clearly we are filling a need for families to connect with each other in a way that is not found elsewhere on the Web - by offering a responsible way for parents and caregivers to help each other and share tips, advice and information, and by providing useful tools like our searchable allergy-free recipe database to make their lives easier and their kids happier and healthier." In addition to more than a dozen interactive support forums (message boards) and an extensive recipe database, POFAK offers food-allergy news and research updates, parent education resources, an "Allergy Buyers' Guide" featuring food-allergy friendly businesses and products, monthly and quarterly publications, food allergy alerts, and more.

Initial funding for the volunteer-led charity was from donations and membership fees, as well as financial support from businesses that provide services or products for those with food allergies, including Dey L.P., Verus Pharmaceuticals, Abbott Labs/Ross, and Nutricia North America. Support from the business community continues to grow and this year, additional business sponsors include Enjoy Life Foods, Ian's Natural Foods, SunGold Foods, Pamela's Products, Ian's Natural Foods and Simple Food Inc.

With up to five million children now affected, food allergies have been called a growing epidemic by some health experts. Kids With Food Allergies continues to seek input from its membership to prioritize and add new features for a growing number of families seeking food allergy-related health information and peer support online. And Mitchell, whose teenage son still suffers from a life-threatening dairy allergy, remains committed to the cause. An unpaid volunteer, she devotes more than 40 hours a week to the group while managing a team of more than 35 volunteers from across the country.

"Until there is a cure for food allergies, we have much work to do in terms of creating more programs to help meet the day-to-day support needs of parents and caregivers managing this often life-threatening condition, and in collaborating with other nonprofits and businesses to work together on future educational, advocacy and research initiatives," says Mitchell.