By Jill Hornig
It takes a special person who can take a personal challenge and turn it into one of the foremost online support communities for families facing similar challenges. Lynda Mitchell, the founder and president of Kids with Food Allergies Foundation (KFA) is such a person and a Woman You Should Know. Lynda’s life changed in 1990 when her son was born with a life threatening birth defect. After overcoming a stay in the NICU, several surgeries and multiple hospitalizations, her son’s complicated medical challenges were compounded when he developed multiple food allergies.
Back then, it was almost unheard of for a child to have one severe food allergy, let alone nearly a dozen. Information was scarce and Lynda cooked all of her son’s food by scratch, making mistakes along the way and doing the best she could. She felt isolated and alone.
Using those experiences, Lynda created a listserv called Parents of Food Allergic Kids (POFAK) in September 1998. When the number of members kept increasing, Lynda realized that a more organized forum, with reliable, trustworthy information, was necessary to help all of the families struggling to live with their children’s food allergies. KFA was officially created in 2005 as a tax-exempt, nonprofit organization. It now has approximately 24,000 members from all around the world, and offers families of children with food allergies the one thing that Lynda was missing when her son was diagnosed: to know that they are not alone.
KFA offers a “World of Support” to help families learn how to live with food allergies and learn how to keep their children safe and happy. Parents help each other with “been there, done that” advice and knowledge that can drastically shorten the learning curve, especially important when a child could die from eating the wrong thing. The message forums contain over 20 specialized forums, including forums for preschool children, school age children, nursing mothers, living with no or few foods, news and research, asthma, eczema and reflux and three forums dedicated to food and cooking support. Parents learn from each, as well as learn from the extensive collection reliable articles and resources, including product safety and labeling, a list of allergens that can appear in medicine, preparing for school, and a helpful downloadable guide for the newly diagnosed.
Lynda’s vision of a supportive community with reliable information lead her to seek medical professionals to serve an advisory function and make sure that the information KFA provided to parents was safe and reliable. Today, KFA’s Medical Advisory Team includes pediatric allergists, pediatricians, a medical nutrition therapist, a clinical pharmacist, several licensed clinical social workers, a licensed clinical psychologist and a school nurse program director.
KFA has a small staff of employees, and a larger staff of volunteers, who follow Lynda’s leadership, and help maintain the community culture of support. KFA’s volunteer staff has helped ensure that the community stays true to the original vision, and KFA has managed to avoid the pitfalls of message spamming, harassment and divisive comments that pepper other internet sites, as well as many food allergy related news accounts. What also sets KFA apart from other food allergy support groups is that, from the start, families of children with other food restrictive conditions were welcomed and supported. Families whose children have Eosinophilic Gastrointestinal Diseases (EGID), Food Protein-Induced Enterocolitis Syndrome (FPIES) and feeding tubes can find support and help at KFA from other families who know what they are going through.
As a mother of a child with multiple food allergies, I discovered KFA just when I needed it most: late at night, by myself, after my children were in bed and I was wondering what I was going to feed my food allergic baby for breakfast in the morning when he was allergic to eggs and wheat (and peanuts). Discovering KFA that night changed my life and the life of my child. Over the years, my son grew and our challenges changed: worrying about arts and crafts projects with food ingredients in preschool; his first anaphylactic reaction when we had to use his epi-pen and call 9-1-1; starting elementary school and figuring out how to teach him about his own allergies. Throughout the past 5 years, KFA was right there with me, helping me grow and change with my child.
I have had the pleasure of working with Lynda Mitchell as a volunteer with KFA and can attest to the strength of her leadership, her vision and her commitment to those families served by KFA. Lynda has taken her personal challenges and created a community to make those challenges easier for all of those who have followed in her footsteps. And now, as she and her son face the challenges of living with food allergies at college, she is still paving the way for the millions of children who are living with and growing with food allergies.
About The Contributor
Jill Hornig has been a member of KFA since 2007. She is the mother of three boys, the youngest of whom is allergic to peanuts, tree nuts and sesame seeds.
May 13-19 is Food Allergy Awareness Week, for more information, check out The Food Allergy & Anaphylaxis Network